Elder Incontinence

Overview of this Blog on Family Caregiving and Incontinence by Catherine D'Ambrosio, RN, PhD

Family Caregiving and Incontinence -Blog Overview

by Catherine D'Ambrosio, RN, PhD         dambrosi@uw.edu 

It is important to note that incontinence is NOT a normal part of aging.  All incontinence needs to be evaluated by a qualified health practitioner.

Family caregivers provide the bulk of long term care to American elders.  The care required is becoming increasingly complex and the duration of time the care is needed is often indefinite, lasting a decade or more. Family caregivers must typically provide this (sometimes advanced and complex nursing) care to their elders without support or guidance from professional nurses.  Physicians -while accessible, are not typically brimming with help or support to guide your family caregiving efforts to support your elder's toileting continence.

Incontinence is the single biggest reason family caregivers decide to place their elder in an institution. Many family members want to avoid nursing home placement of their elder -at all costs. Many families cannot afford to place their elder in a nursing home and do not yet qualify for Medicaid.  Many other families cannot find an acceptable facility -one they would be willing to trust.  Still others cannot find an available bed in their (geographic) location.

I have been a registered nurse since 1983.  I have advanced degrees in nursing (Bachelor of Science in Nursing, Master of Science in Nursing, and a Doctorate of Philosophy (PhD) in Nursing).  This blog and its entries are dedicated to the needs of family caregivers who are confronting and dealing with the complex nursing care issues around incontinence in their elderly family member.  

This blog site will address 9 areas around incontinence care, including:

1. Detailed steps to preventing incontinence episodes through the use of a behavioral technique called "Prompted Voiding" (referencing: Schnelle, Ouslander, Hu, et al).
2. Specific ways you can individualize "Prompted Voiding" to your elder's individual needs and your specific capabilities.
3. Provides guidelines for identifying what kind of cognitive and mobility assistance your elder might require to support their toileting continence.
4. Safety Issues:  Provides tips for minimizing the probability your elder will fall on their way to the toilet or be rendered helpless or incommunicado if they do fall.
5. Steps you can take to minimize the impact of incontinent episodes on you, your elder, and the entire family.
6. Provides tips and guidelines for *Building a Family Caregiving Team* to help you provide the care your elder requires.  Caregiving can be an incredibly isolating experience.  The caregiver is vulnerable to neglecting their own needs and becoming disabled themselves, even dying.  Building a team of people to help you can be the key to your survival through this ordeal.
7. Strategies for addressing common interpersonal problems that often accompany incontinence, including:  frustration, anger, rage, violence (either to or from the elder), emotional abuse, neglect (of yourself or your elder -or both), social isolation, and depression.
8. Tips on knowing when it is time to consider institutionalization (nursing home placement) of your elder.  What are the signs and what are the factors you might want to consider.
9. I will also review what I see as the inevitable solution to the problem of incontinence care and family caregiving:  Personal Nursing Care Robots designed to assist elders to maintain the highest level of toileting function and independence possible -in the privacy of their own home, allowing elders to age with grace and dignity -without bankrupting themselves, their family, or future generations of tax payers.

Welcome to my blog!  I look forward to hearing your feedback about what you find helpful and areas where you disagree.  

Many thanks for stopping-by.  I wish you the very best of luck and love in providing care to your elder.  I sincerely hope the information in this blog is helpful to you!

Kind regards,

Catherine

III. Determining Cognitive Prompts Necessary to Support Your Elder's Toileting Continence

Determining the type and intensity of cognitive prompts necessary to support your elder's toileting continence is often a complex process that changes from one moment to the next.  Too little prompting can leave your elder lost and confused while too much can be irritating -even provocative.

Cognitive prompts can be as simple as looking over at the elder and nodding toward the bathroom (high-level prompt) or so complex that it hardly seems worth the effort.  For example, elders who are severely cognitively impaired may require very detailed prompts such as the following:

"Do you need to go to the toilet?"

"OK, stand-up."

"Walk this way."

"Step-up here."

"Turn around."

"No, (don't walk away).  Turn around.  Yea, that's it."

"Un-button your trousers.  Good."

"Pull the zipper down."

"OK, now pull-down your pants."

"Sit-down."

"Its OK to go now."

"Wow, that was a lot of work!  You made it!  Great job!  I'm going to give you some privacy.  Let me know when your finished (peeing / pooping).  I'll be in to check on you in a few minutes."

If your elder is at-risk of falling and is not likely to call for your assistance when he/she finishes urinating/BM, then you will likely need to keep your eyes on your elder and remain immediately (physically) available to them.

Equally detailed prompts maybe needed to wipe / clean-up, re-dress and return to their previous activity and location.

One difficulty often encountered by family caregivers is that the elder's cognitive prompting needs may vary from one day to the next, even from one moment to the next.  Because elders with impaired mobility and existing cognitive impairments are more vulnerable to a condition called DELIRIUM, it is important that you report any acute (fast-onset and substantial) changes in your eleder's mental status.   

For example, if your elder is normally able to answer your question about whether they need to use the toilet, but today they cannot seem to understand you, this maybe an indication that your elder is suffering from delirium.  You will need to investigate further.  Rapid detection of delirium is key to a rapid recovery from delirium.

Minimizing the Impact of Incontinence on you, your elder and your entire family

 Incontinence and the odors produced by incontinence can render even the most beautiful home into an unpleasant place to live or to visit.  It is important to the health, comfort, and well-being of the entire family to keep your home clean and smelling fresh.  

Minimize the impact of any incontinence by taking the following pro-active steps:

 A.    If it is at all possible, remove all rugs and carpeting from your home. 

Ø  Rugs –especially throw rugs make it more difficult for elders to safely navigate through the house –especially if the elder is hurrying to the bathroom. 

Ø  Rugs increase the likelihood that your elder will trip, fall and injure themselves. 

Ø  Fall-related injuries sustained by frail elders can have a devastating impact on the elder’s ability to remain functioning independently in their own home.

Ø  It is difficult to get the smell out of rugs and carpeting after an incontinent episode. 

Ø  Some rugs can be machine washed, but others must be professionally cleaned or serviced.  

 

B.   Cover mattresses, upholstered furniture and car seats in three layers: 

1.    Cover first with a water-proof, washable plastic sheet (or even a shower curtain).  Secure to the chair, sofa or car seat with upholstery elastic (giant rubber bands).  The purpose of this plastic is to protect your mattress, upholstery and automobile interior from being soiled with urine and feces.

2.    Cover the plastic sheet with a washable mattress pad.  This will make the surface less likely to rip or tear and will make the surface more comfortable to sit on.  Sitting directly on plastic sheets –even those covered with a thin cloth such as a bed sheet –can be very uncomfortable, particularly for long periods of time.

3.    Cover the washable mattress pad with a nice, or even an old washable bed sheet.  Sometimes it is best to use sheets and fabrics you don’t mind having soiled or ruined with incontinence messes. 

  

Some tips many of my clients have made and have found useful include:

Ø  Promptly cleaning-up all incontinence messes and airing your house-out will keep your house smelling fresh, rather than smelling like a bad nursing home.

Ø  Promptly remove any and all soiled linens. 

Ø  Be sure to dump any solid fecal material in the toilet before washing.

Ø  Wash the linens in your washing machine with hot water. 

Ø  After washing cycle is complete, smell the sheets before you put them in the dryer.  Some linens may need to be washed more than once. 

Ø  Fabric softeners added to the second rinse cycle can help combat foul smells from incontinence.

Ø  Depending upon your water, adding vinegar or baking soda, or boric acid (available in most supermarkets) to your washing machine to help eliminate incontinence odors from your linens.  Some laundry detergents are specifically designed for eliminating foul odors.

Ø  Keep an ample supply of old sheets and mattress pads* handy so you can keep your furniture both protected from incontinence and comfortable for everyone to sit on.

Ø  *Many of my clients have friends and relatives who frequent garage sales (boot sales or rummage sales) for them, and purchase old bed linens for as little as $0.25 per sheet, costing substantially less than new sheets.  I advise you wash these used linens before you use them because many have a musty scent from storage closets in other people’s homes.

Ø  Other clients of mine prefer to watch department store sales and purchase off-season sheet colors and prints to outfit and accommodate their rooms for incontinence care.

Ø  Wash-off the soiled plastic sheet with a household cleaner and a damp cloth, then dry-off with a clean, dry rag. 

Ø  Some plastic sheets can be washed in a washing machine on cold water when necessary, then hung to drip-dry. 

Ø  I would advise against placing plastic sheets in the dryer –for obvious reasons (it will likely melt).

Ø  Many of my clients find inexpensive plastic shower curtains work quite nicely.  Just make sure whatever you choose is completely water repellent, so the urine and stool cannot soil your upholstery.

Ø  Regarding incontinence episodes in the car:

v  Most often my clients have told me –that unless it is going to be a very long journey and they can access clean, private toilet and sink facilities, it is usually easier for them to wait to clean-up when they get home –than to try and accommodate their elder’s needs in a public rest room.

v  None the less, keep a shopping bag in your trunk with

§  a change of clothes,

§  a couple incontinence undergarments,

§  a box of wet (diaper) wipes,

§  disposable rubber gloves for your hands,

§  a spare set of sheets,

§  1 or 2 mattress pads (depending on how you cover your seats), and

§  plastic upholstery covers, along with

§  a plastic bag to store dirties

§  a plastic bag for trash including soiled incontinence undergarments and used wet wipes

–in the event your elder has an incontinence episode while traveling.

 

I would be very happy to share any other tips you might have and would like to share.  (Please post in the comments section at the bottom of this blog page.)

 

 

C.   Incontinence Undergarments can often contain both urinary and fecal incontinence, protecting clothing, upholstery, and carpets. 

 

Ø  Containing the incontinence to the incontinence undergarment (diaper) ultimately reduces your work-load and can make your house less vulnerable to the foul stench that often accompanies incontinence.

Ø  It is very important to your elder’s skin, to their dignity and to the scent of your home that you change the incontinence undergarment as soon as possible after an incontinent episode.

Ø  Dump any solid material into the toilet and flush immediately. 

Ø  Wash or scrub the toilet if indicated.

Ø  Place the soiled incontinence undergarment in a sealed plastic bag inside a covered trash pail.  Empty the trash pail into the outside rubbish can as soon as possible.  Try not to go more than 24 hours between emptying this trash can.

Ø  You may want to avoid changing the incontinence undergarment until you can either:

v  get your elder to the toilet or the shower, or

v  until your elder done urinating or defecating.

because changing your elder in the middle of an incontinent episode can be a very messy and distressing experience for all parties.

Ø  If your elder is experiencing incontinent episodes once a week or more often, encourage your elder to wear incontinence under garments.  Many gender-specific brands are manufactured to accommodate even very large volumes while remaining thin enough to wear without being noticeable under most clothing.

Ø  Some elders only experience incontinence at night.  For such persons, it may be necessary to wear incontinence undergarments only when they dress for bed in the evening.

Ø  It is best for everyone if your elder can be washed-up with soap and water after every incontinence episode.  Bidets are often all that is needed.  Many toilet manufacturers now offer smart toilets that have warm, soapy water washes, followed by warm water rinses, then blow-dries the bottom –all at the push of buttons on a hand-held remote controller.

 

D.   Aromatherapy:  Using scents can improve the scent of your house and can even make you feel good.  Some scents can calm you.  Others bring pleasure or happy memories with them.  For example, if you have a scent that reminds you of a favorite time of year or a particular vacation, you might want to select that scent for your home. 

 

There are even aroma therapists available in many areas who can lead you through purchasing just the right scent for you.

 

Smell any diffuser scent before purchasing to make sure you select one that pleases you.  There are many ways to scent your home and diffuse foul odors, including:

 

1.    Liquid diffusers with wooden sticks.  Be careful to place in a location where the bottle is unlikely to get knocked-over.  Diffuser scents are often made with oils that can stain your furniture.

2.    Plug-in diffusers that come in a wide variety of scents.

3.    Potpourri comes in hundreds of scents and colors.  Some scents are very strong, others barely perceptible. 

NEVER USE CANDLES OR INCENSE IF ANYONE IN YOUR HOUSEHOLD USES OXYGEN

4.    Burn incense, but be careful to never leave the burning incense unattended.  If you are reading this, you likely have enough problems without adding a house fire to your list. 

5.    Candle light can be soothing to look at, can dissipate foul odors of incontinence, and add a pleasing aroma to the room.  Be very careful using candles, particularly if your elder is confused or disoriented.  Never leave any candle burning unattended.  If you choose to burn candles it is a good idea to place the candle in a sturdy container where it is unlikely to be bumped-into or knocked-over.  Never burn candles near curtains or drapes.  They can catch fire very easily. 

 

 

E.   Air-out your house:

Florence Nightingale in her Notes on Nursing (1859) enumerated five essential points (pure air, pure water, efficient drainage, cleanliness and light) in securing the health of houses.  Nurses such as Virginia Henderson (1978) have continued to advocate the importance of fresh air and light to our patients’ health, well-being, and recovery.

1.    Open windows and doors regularly to create a draft and air-out the house with fresh air.

2.    Use fans if necessary to create a draft and eliminate the foul odors from your house.  Be certain to protect your elder from the draft, especially if it is cold outside or your elder finds the draft unpleasant.

3.    In the unfortunate event you cannot actually open your windows or doors to let the stench of incontinence out and fresh air inside (some of my clients live in very dangerous neighborhoods and are afraid to open their windows), then by all means run your bathroom and kitchen fans to help re-circulate the air in your house.

4.    Air purifiers are available in many health and health food stores, including on-line and catalog stores.  Many of them are helpful in eliminating foul odors very quickly.  There is tremendous variation among these products and they can be very expensive, so choose carefully.  Mold can grow in some appliances, so make sure you keep them clean.

5.    Clean your furnace and air conditioner filters frequently.

6.    If you have forced air ventilation in your home, be sure and have your ducts cleaned regularly.

 

 

 

VIII. When is it time to consider nursing home placement? (3. selecting a facility) by C. D'Ambrosio, RN, PhD

Selecting a Long-Term Skilled Nursing Care Facility for your Elder

by Catherine D'Ambrosio, RN, PhD  dambrosi@uw.edu 

Choosing a nursing care facility that meets your needs, requirements, expectations, preferences and budget will require some research, some planning and some soul searching.  Having knowledge of your elder's actual financial assets will be essential to making some of the decisions.  Many elders wish to keep their finances private and return only vague, obtuse answers about their finances, such as "We have plenty of money dear." (which might they have assets amounting to $200 to $300), or "I don't know how I am going to afford anything." (with a financial portfolio worth tens of millions of dollars).   Most people fall somewhere in the middle.

I've organized this set of blogs (on nursing home placement decisions) around three questions most often asked of me by elders and their family caregivers who are considering relocation to a nursing care facility.

This entry addresses the third (III) question of how do we select the very best nursing care facility for our elder?  Questions I and II are addressed in separate blog entries (but are listed below along with their links).

I.              What are some of the signs that it may be time to being exploring nursing home placement?

II.            How much do nursing homes cost and who pays for nursing home care?

III.           We only have so much money, so how do we select the best nursing care facility for our elder?

1.    Location of the facility

2.    Cost of the facility

3.    Smell

4.    Ignore the décor, the chef, and any gourmet menu –until after you consider NURSING STAFFING RATIOS, and speak with a number of people.

5.    Nursing Staffing Ratios

6.    Interview the Nursing Staff

7.    Look around you and take note of whether elders are tied-up or restrained.  Ask the tour guide and the nurses about the facility’s policy on restraints.

8.    Talk to the Patients in the Facility

9.    Talk to Family Members of Patients in the Facility

10. Ask yourself some questions about your elder’s current condition

11. Some things I would like for you to know

 

This blog entry addresses the third question of:

III.  We only have so much money, so how do we select the best nursing care facility for our elder?

Choosing a nursing care facility that meets your needs, requirements, expectations, preferences and budget will require some research, some planning and even some soul searching. 

1.   Location of the Facility

The locations most ideal are near or easily accessed by family caregivers, friends, and relatives.  Elders who are well-tended by out-spoken advocates can sometimes be less vulnerable to neglect than elders who receive no or infrequent visitors and without an advocate.

Like real estate, there is location, location, and location to be considered.  Sometimes it is not enough to consider the city or town, but the neighborhood, and the location (such as a busy corner, a secluded park, or a river bank) within the neighborhood.

 

2.   Cost

You must consider how much your elder can afford to pay, and how much they are willing to allocate to their care in the nursing facility. 

Having knowledge of your elder's actual financial assets will be essential to making some of the decisions.  Many elders wish to keep their finances private and return only vague, obtuse answers about their finances, such as:

·         "We have plenty of money, dear." (which might mean they have assets amounting to $200 to $300), or

·         "I don't know how I am going to afford anything." (with a financial portfolio worth tens of millions of dollars).

·         I have worked with plenty of people at both ends of the spectrum and contorted perceptions.  Most people fall somewhere in the middle.

Knowing if and precisely how much any family, relatives or friends are willing to contribute to funding the elder’s long-term care will also need to be factored-in on the decision.

 

3.   Smell

The very first thing people notice when they enter a facility is the smell.  People are immediately turned-off by the overwhelming odor of urine and feces.  Any odor you once smell is unlikely to alter or diminish over time.  Your sensitivity to and awareness of this odor will however become less acute.

4.   Ignore the Décor

While sumptuous lobby décor and a gourmet chef and menu are doubtless appealing, even enticing, they are not the reason you are there.  Please try to ignore the décor in your initial assessment.  After you consider and make a decision based on #5 (below), then factor-in the lobby décor and the gourmet menu with the location, the cost, and the smell.

 

5.   Nursing Care Staffing Ratios

Ask to see the facility’s actual patient care nursing staffing ratios for both the facility and for the unit where your elder would be placed. 

A.   This is not the number of RN’s, LPN’s and CNA's employed by the facility, divided by the number of patients, because

                                              i.        Many nurses and nursing assistants work part-time.

                                            ii.        Many nurses and nursing assistants work per diem (on-call).

                                           iii.        Nurses do not work 24/7.  They work approximately 40 hours per week, and they take vacations and sometimes get ill and take sick days.

                                           iv.        Many of the RNs employed by nursing homes perform management, staffing, planning, marketing, and administrative functions, and do not provide patient care.

                                            v.        Facilities often employ many RNs are to do only paperwork, to fill-out Medicare, Medicaid and insurance forms necessary for reimbursement, often on patients they have never taken care of

 

B.   Look at the facility’s actual –not their planned or optimal staffing ratios. 

                                              i.        What are the patient care staffing ratios today? (remembering to subtract the number of nurses and nursing assistants who did not show-up today.

                                            ii.        What were the patient care staffing ratios yesterday?

                                           iii.        What were the staffing ratios last week, last month, and last year?

                                           iv.        Fill-out the chart (below) for each shift (days, evenings and nights).  Expect that day shift staffing ratios will be higher than evenings, and evening staffing ratios higher than night shift staffing ratios.  Weekend staffing ratios are often lower than weekday staffing ratios.

 

C.   Make sure you know and understand the facility staffing ratios and how that breaks-out for each unit on each shift, including weekends and holidays.  Some units such as Medicare Skilled Nursing and Rehabilitation units often have higher staffing ratios than other units that are not mandated to comply with Medicare’s more stringent requirements. 

 

D.   Awards are interesting but sometimes of little or no consequence.  All too often awards for “Best Nursing Home in the World” or whatever, are meaningless marketing tools. 

 

E.   In addition to focusing on the patient care staffing ratios, inquire and request specific information about the degrees and certifications of the registered nursing staff, and training seminars attended by the nursing assistants.  Ask questions including:

                              i.                How many Master’s prepared nurses are on-staff at this facility? 

                            ii.                How many Master’s of nursing consult with the facility?  When?  How often?  What do they do?  What training education and training seminars do they provide to the nursing staff?

                           iii.                How many patient care nurses employed by the facility have bachelor’s degrees in nursing (BSN)?

                           iv.                How many nurses in the facility have a wound, ostomy, or continence care certification?  How often do they provide inservices (training seminars) to the other nurses and the LPNs and nursing assistants?

                            v.                How many nurses in the facility have other certifications –such as Gerontological nursing?

                           vi.                How often are nursing assistants required to attend education and training seminars on provision of basic nursing care? 

                          vii.                What types of training seminars are offered to the facility’s nursing assistants?  -or are basic nursing care seminars even offered at the facility?

 

6.   Interview the patient care RNs, LPNs, and nursing assistants

Optimally –if you can, take the opportunity to speak to the nurses and nursing assistants individually -away from the marketing director or facility tour guide. 

Or, if you have a friend, neighbor or relative who is residing in this particular facility, visit them and talk to the nurses and nursing assistants who come to your friend’s or relative’s room to care for them. 

If you are a gregarious or more sociable soul, offer to meet and host a nurse for coffee in the cafeteria or a local coffee shop. 

When you speak with the nurses and nursing assistants, ask them:

A.   How many patients do you have today?

 

B.   If you are speaking with an RN, ask:

 

                              i.        How many LPNs (licensed practical nurses) and CNAs (certified nursing assistants) do you have assigned to you?

                            ii.        What do your duties include?

                           iii.        Do you provide any direct patient care?

                           iv.        What is the most number of patients you’ve ever been assigned in this facility?  How often does this happen (being assigned so many patients)?

                            v.        What is the least number of patients you’ve ever been assigned in this facility?  How often does this happen?

                           vi.        How many patients do you think would be optimal –for you to care for at one time?

Compare the RN’s optimal numbers with the actual number of patients she’s caring for.  How substantial is the difference?

C.   If it is an LPN you are speaking with, ask:

                              i.        How many CNAs do you have assigned to you?

                            ii.        What do your duties include?

                           iii.        What is the most number of patients you’ve ever been assigned in this facility?  How often does this happen (being assigned so many patients)?

                           iv.        What is the least number of patients you’ve ever been assigned in this facility?

                            v.        How many patients do you think would be optimal –for you to care for at one time?

                           vi.        Compare the actual numbers with the stated optimal numbers.

 

D.   If you are speaking with a CNA, ask:

                              i.        How many of your (X –number of patients) are physically and cognitively independent?  (expect this number to be none to exceedingly few in a skilled nursing care facility)

                            ii.        How many of your patients are in a completely dependent or a vegetative state?  (hopefully this number is as low as the independent number, with most of the patients ranging somewhere between these two extremes)

                           iii.        What do your duties include?

                           iv.        How many of your (X –number of patients) required the assistance of more than one nursing assistant?

                            v.        What is the most number of patients you’ve ever been assigned in this facility?  How often does this happen (being assigned so many patients)?

                           vi.        What is the least number of patients you’ve ever been assigned in this facility?  How often does this happen?

                         vii.        How many patients do you think would be optimal –for you to care for at one time?

Ø  Compare the CNA’s optimal numbers with the actual number of patients for whom she is currently providing care.  How substantial is the difference?

Recommendations for interviewing nursing home staff 

Highlight and print several copies of the questions listed below.  Take them with you to the nursing home and fill them out as you speak with each nurse and nursing assistant.  

Fill-out a separate form for each person you speak with.  

Compare what the marketing director says about the nursing staffing ratios (the number of patients assigned to each nurse or nursing assistant) with the numbers the nurses and nursing assistants give you.

 

Date __________  Time of day:  ________________

 

Name of Facility: __________________________________________

 

Name & Title of the person you’re speaking to:  ___________________

 

Location in the facility:  ___________________________________

------------------------------------------------------------------------------------------------

 

1.     How many patients are you assigned to take care of today?_______

 

2.     Can you please tell me what is a normal or average assignment (how many patients each) for RN’s, LPN’s, and Nursing Assistants here (in this facility)?:

Weekday	Day Shift	Evening Shift	Night Shift
RN’s
LPN’s
Nursing Assistants

 

Weekend	Day Shift	Evening Shift	Night Shift
RN’s
LPN’s
Nursing Assistants

 

3.    What is the worst staffing ratio you’ve ever seen here?

Worst Time	Day Shift	Evening Shift	Night Shift
RN’s
LPN’s
Nursing Assistants

 

How did this happen? (i.e., a blizzard or a hurricane) ___________

 

How often do these sorts of (worst) staffing ratios happen (in your experience)? 

E.   TOILETING

Ask any of the RNs, LPNs or CNAs the following questions.  They should know the answers.  More than half of all patients or residents in skilled nursing care facilities suffer from incontinence.

                                    i.    How many of your patients toilet themselves independently?

                                  ii.    How many of your patients require cognitive prompts to toilet themselves?

                                 iii.    How many of your patients require physical assistance to toilet themselves?

                                 iv.    How many of your patients are completely incontinent, diapered and dependent on the nursing assistants for diaper changes?

·         How often are diapered and incontinent patients cleaned and changed?

                                  v.    How many of your patients require the physical assistance of more than one person to toilet themselves?

                                 vi.    How many of your (X number of) patients receive *Prompted Voiding?

                                vii.    Can you please tell me about how you provide *prompted voiding*, and how often?  Please note the following:

·         Providing prompted voiding every hour (while awake) is optimal, but every two hours while awake is also effective and quite acceptable;

·         Providing prompted voiding to support the existing toileting capabilities takes three times as long as diapering the elder in a dependent position.

·         Special training on provision of prompted voiding is required.  Prompted voiding is not terribly complicated, but it is not intuitive either.

·         Be mindful of what is within the realm of physical possibility and the time constraints of caring for multiple patients.

                              viii.     Do you provide *prompted voiding* to patients who require more than one nursing assistant to physically assist them to and from the toilet?

·         Be mindful that dedicating the time and expertise of more than one highly trained nursing assistant to support the toileting continence of one single patient is a very time-consuming, labor-itensive process, and thus very expensive to provide.

·         Do the math.  If the CNAs each have 8, 10, or 15 patients, they will not have the time to reliably provide *prompted voiding* to even one patient, much less more than one patient, or for patients who require the assistance of more than one nursing assistant.  This does not mean the nursing assistants don’t try or that they wouldn’t like to provide this intensive level of care, but they simply won’t have the time to dedicate so much time to the toileting continence of one single patient.

·         Compare the answers given by the different people you speak with.

·         Confrontation is not your purpose.

·         You are not there to prosecute the nurses and nursing assistants for doing their job the best they can, or for dealing with their assignment and the staffing ratios as they are.

·         You are asking these questions in order to gather information and decide whether placing your dear one in their care is a good idea.

                                 ix.    Have you attended any special conferences or training seminars on mobility assistance, cognitive prompting, and toileting care?

                                  x.    How often do you attend training seminars on toileting care?

 

* prompted voiding references:  Schnell, Ouslander, Hu

 

F.    Eating

                                    i.    How many of your patients feed themselves independently?

                                  ii.    How many require some assistance with eating, but are not entirely dependent?

                                 iii.    How many of your patients are entirely dependent in order to eat?

                                 iv.    Do you feed your patients who require assistance, or does your facility have a “feeding team”?

 

G.  Bathing, Grooming and Dressing

                                    i.    How many people do you have to (or have you given) a bath, or assisted with bathing today?

                                  ii.    If the nursing assistant answers zero, ask whether the facility employs bathing teams.

                                 iii.    How much time do you generally spend assisting each patient with their bathing (or showering), grooming, and dressing?

                                 iv.    How often are patients bathed or showered on your unit?

                                  v.    Do you get everyone up and dressed every day?

·         If not, why not?

·         Under what circumstances? (answers you might expect include when an elder:

Ø   is ill, or

Ø  recuperating from an illness and simply too weak, or

Ø  requests to remain in bed, or

Ø  refuses to get out of bed.)

                                 vi.    How many of your patients move-about independently –with or without any mechanical assist devices (such as a cane or a walker)?

                                vii.    How many of your patients require two or more people to transfer and assist them from one place to another (i.e., from the bed to the chair, from the chair to the toilet)?

                              viii.    How many of your patients require the use of a mechanical lift to transfer them from one place to another?

 

7.   Look around you and take note:

A.  Are any of the patients tied to their beds?  (you might notice straps hanging from the side of the bed)

B.  Are any of the patients tied to their chair or wheelchair?

C.  Are any of the patients restrained to their chair with a lap table secured to their chair?

D.  In total, how many patients do you see restrained?

E.  Ask the nurses and your tour guide about the facility’s policy towards restraints.

 

8.   Talk to the patients. 

    A.  How do they like the facility?

    B.  How do they feel about their nursing care?

    C.  It can be advantageous to already know someone –even distantly- -whom you can speak with and ask about the facility.  Sometimes however people want to say only good things about the facility for fear of casting themselves or the nurses –whom they maybe attached to- in a bad light.

 

9.    Talk to the Family Members of patients in the facility.  Ask them:

    A.  What do they think of the nursing care provided to their elder?

    B.  Do they feel the facility has worked to improve their elder’s health, function, and / or quality of life?

    C.  Do they regret having placed their elder in this facility?

 

10.       Ask yourself some questions about your elder’s current condition:

Ø How many people does it currently take to get your elder out of bed, and to and from:

Ø    the toilet?

Ø    the dining room or kitchen table?

Ø    the living room chair or sofa?

Ø    the rocker on the front porch?

 

Ø Know that if your elder requires assistance from more than one person for mobility, that your elder’s mobility will likely diminish after admission to the skilled nursing care facility –unless of course you are able to afford to place your elder into a uber luxury skilled nursing care facility with very high nursing staffing ratios.

 

11.       Some things I would like for you to know:

A.    Most elders who are physically and cognitively independent now live in retirement communities or Assisted Living Facilities where:

                              i.        They do not have to pay as much as skilled nursing facilities cost.

                            ii.        They do not have to share a bedroom and a bathroom with a virtual stranger whose habits (such as watching television 24/7, or frequently filling the room with their visitors).

B.   Odds are that in facilities with very low staffing ratios, a frail elder’s existing function (unless independent) will likely be allowed to deteriorate to a dependent state.

C.   Caring for a dependent elder is much easier to manage and less time-consuming than to care for and promote the highest level of function possible among elders who are struggling to maintain their function and independence –because such elders tend to move very slowly.

D.      Some States do not specify minimum nursing staffing ratios for non-Medicare funded beds.  This means that:

                             i.        each RN could potentially have as many as 90 patients –far too many to provide or even to competently supervise minimal nursing care.

                           ii.        Each LPN could potentially have as many as 50 patients to whom she is passing medications, far more than is safely or optimally handled.

                          iii.        Each CNA could potentially have as many as 15 patients.  Such an enormous number of patients is far too many for a single nursing assistant to provide even minimal care.

 

E.    Just because your elder is in a skilled nursing care facility does not render them invulnerable to neglect and its potentially devastating effects on their health, function, independence, and quality of life.

 

F.   Some skilled nursing facilities provide “assembly line” nursing care where, for example:

                              i.    One team of nursing assistants (sometimes) called “feeders” feed all elders who are dependent upon or require assistance from others for eating.  Elders are typically fed in the common dining room where the feeding team members often move from one patient to another.

                            ii.    Another team of nursing assistants (sometimes) called “showers” wear shower thongs on their feet and shower each patient in-turn.

                           iii.    Another team of nursing assistants (sometimes) called “beds” change all the bed linens in the facility.

                           iv.    The remaining nursing assistants take elders to and from the toilet, clean-up incontinent messes, and perform any other duties assigned such as taking and recording temperatures, blood pressures, heart rates and respiratory rates..

 

G.    Ask the facility director or marketing representative about what kind of nursing is practiced in the facility (i.e., team, assembly line, primary nursing, etc.).  Although primary nursing (where the same nurses and nursing assistants are assigned to particular elders) is an optimal ideal, it may be impractical –even logistically impossible in situations where staffing ratios cannot support it (primary nursing care). 

 

Team nursing and assembly line nursing, while typically never optimal, maybe the most efficient way (particularly in facilities with very low staffing ratios) to ensure each patient receives a bath, timely assistance with meals, and reliably toileted or diapered on a regular basis.

 

H.   There is not a cardinal right or wrong type of nursing (i.e., primary nursing, team nursing, or assembly line nursing) for a facility to practice.  What matters most is the level and quality of nursing care provided to the elders in the facility.  Having very low staffing ratios is not a crime.  It is simply less than optimal and as such, can in many circumstances, be reasonably expected to result in less than optimal outcomes for many of the recipients of the care.

 

When is it time to consider nursing home placement? (2. cost & payment) by Catherine D'Ambrosio, RN, PhD

When is it time to consider nursing home placement? (2. cost & payment) 

by Catherine D'Ambrosio, PhD, RN                  dambrosi@uw.edu 

You want to do what is most beneficial for your elder and to take the very best care of them possible.  It is most likely why you're here on this site.  I will try to give you information that can help guide you through this process.

Having (and taking) the time to plan and consider your (nursing home placement) options and preferences before you are in a dire situation gives you power and leverage you will not otherwise possess.  

Delaying or postponing information gathering is not the same thing as delaying or postponing nursing home placement.  Ignoring the need for knowledge until you are in an urgent or emergent situation -can place you and your elder in a very compromised position.  Seeking-out the necessary knowledge and information (about nursing home placement decisions) in advance will reveal to you options and preferences you might never otherwise realize -until perhaps it is too late.

ORGANIZATION:

I've organized this set of blogs (on nursing home placement decisions) around three questions most often asked of me by elders and their family caregivers who are considering relocation to a nursing care facility.

This entry addresses the second (II) question of how much does nursing home care cost, and who pays for it?  Questions I and III are addressed in separate blog entries (but are listed below along with their links).

         I.    What are some of the signs that it may be time to being exploring nursing home placement?

    II.        How much do nursing homes cost and who pays for nursing home care?

A.   Does Medicare pay for nursing home costs? 

B.  What does Medicare cover? 

C.   When does Medicare cover the cost of nursing home care? / For how long?

D.   What are my options when Medicare payment for the nursing home runs-out?

E.   How do I qualify for Medicaid?

F.    What about long-term care insurance?

III.        We only have so much money, so how do we select the best nursing care facility?

 

This blog entry addresses the second question of:

 II.        How much do nursing homes cost and who pays for nursing home care?

Moderately priced nursing home care costs between $4000 and $8000 per month.  That amounts to $48,000 to $96,000 per year –every year for an average to a decent nursing home.  Up-scale nursing homes can cost substantially more.  

HOW AND WHY DOES NURSING HOME CARE COST SO MUCH?

Nursing care –because it is wholly and completely dependent upon human labor- -is extraordinarily expensive.  Nursing care provided in a facility (whether the facility is called a skilled nursing care facility, a nursing home, or a rehabilitation facility) -while extraordinarily expensive, it is still generally less expensive than private duty nursing care (LINK). 

WHY DOES MY ELDER'S CARE KEEP TAKING MORE OF MY TIME AND COSTING MORE AND MORE MONEY TO TAKE CARE OF AT HOME?

A frail elder’s functional capabilities will quite likely deteriorate over time, and for a (maybe protracted) period during this functional decline, your elder's basic nursing care needs will increase -in both intensity and complexity.

Oddly enough however, caring for a person in a vegetative state is less intensive, less complex and demanding, and far less time-consuming than caring for and assisting an elder who is struggling to maintain their function and independence.  

You can therefore reasonably assume the cost of necessary basic nursing care will increase over time -to a point.  The most intense and complicated basic nursing care needs occur while the elder is still struggling to maintain function, not generally after they have lost function. Supporting an elder's existing, but waining function is much more time-consuming, therefore expensive -than the provision of basic nursing care to an elder in a vegetative state.

What you want to avoid when you place your elder in a long-term nursing care facility -is the acceleration of this functional decline to the vegetative, totally dependent state.

If your elder is already in a totally dependent, vegetative state, determining your options and selecting the best nursing care facility becomes a much less complicated process.

 

A.   Who pays for nursing home care?

About half* of all nursing home costs (in the US) are paid for out of private pockets.  This means that half of all nursing home costs are *not* paid for by Medicare, Medicaid or private insurance of any form, but by the private savings and investments of individuals and their families. 

*This does not mean "you pay half and Medicare, Medicaid or long-term care insurance pays the other half."

By the time an elder requires routine and constant access to skilled nursing care, they have typically depleted or even exhausted their personal financial assets.  Consequently, most elders cannot afford to finance or pay for their stay in a nursing home for very long before they run out of money.

The rules for who pays, when, and under what circumstances can be quite complicated and there are many things you need to know and understand in order to navigate your way through the process of considering nursing home placement for your elder.  Four things I really want you to know -that don't really fit any place in particular in the questions are:

1.    The United States does not have filial liability laws.  The children of elders can be “rich as Roosevelt”, but are not legally liable for the payment of their parents’ health care expenses or long-term care needs.  This does not mean the children of elders cannot pay for their elder’s health care expenses, only that the children are not legally required to do so.

2.    Nursing care can currently be provided only by human nurses and nursing assistants.  Regardless of whether the nurse providing your care has a bachelor’s degree or a master’s degree from an Ivy League or other prestigious university, an associate’s degree in nursing from the local community college, is an LPN with a certificate from a vocational college, or is a nursing assistant who may have dropped-out of high school and completed a 75-hour (2 week-long) course on basic nursing care, human labor is exceedingly expensive. 

3.    Nursing care is currently wholly reliant upon human labor.  Human labor, particularly highly educated, dedicated and compassionate human labor is extraordinarily expensive to provide on a continuous basis.  Even elders who have lived frugally and saved a tremendous amount of money, will run through their carefully accrued savings very quickly once they are in need of continuous nursing care.

4.    Just because your elder needs the type of constant and on-going nursing care provided in an institution does NOT mean Medicare, Medicaid, or any private insurer –including long-term care insurance policies are going to pay for this institutional nursing care. 

B.   Does Medicare cover nursing home costs?

Medicare covers quite a lot of nursing home care, but does not pay for long-term nursing care that is deemed “custodial”.  Below is an explanation of how and what Medicare typically covers and some of the parameters for coverage:

1.    What does Medicare cover?

Medicare covers acute care hospitalizations for medically-diagnosed conditions.  Such (Medicare-covered) hospitalizations are determined, covered, and reimbursed according to the elder’s *medical diagnoses*, not their nursing care needs. 

Medicare will cover a pre-determined amount of post-hospitalization nursing home care in a Medicare-certified rehabilitation or skilled nursing care facility.  The duration of the elder’s stay in such a facility is based on the medically-diagnosed acute care condition that precipitated the hospitalization.

The (dollar) amount, duration, and circumstances under which Medicare pays for rehabilitation or skilled nursing care in a nursing home are very specific.  The amount of Medicare payment for an elder's stay in a nursing home is predetermined -often by factors that have little to do with the elder's chronic and on-going basic nursing care needs.

Medical diagnostic indicators largely determine the amount of Medicare reimbursement to the nursing home -which defines the maximum length of stay in the nursing home.  

While an elder's medical diagnoses might give some indication of the nursing care needs commonly (sometimes) associated with a particular medical diagnosis, such medical diagnoses are not however determinants of an individual's nursing care needs.

Medicare rates are determined by a formulaic labyrinth of rules based on geographic location, medical diagnoses, and many other (sometimes arcane) factors.  Private pay rates in a nursing care facility are generally substantially more than Medicaid rates.  

2.    When does Medicare cover nursing home (rehabilitation or skilled nursing) care?

Medicare may cover your elder’s transfer to and stay in a Medicare-certified nursing home (skilled nursing care facility or rehabilitation facility) after a minimum of a 72-hour long hospitalization.  Medicare coverage of this transfer and stay in a skilled nursing care facility is determined largely by your elder’s nursing care needs, but hinges also on your elder’s qualifying medical diagnosis.

Medicare does NOT pay for any stay in a skilled nursing facility, nursing home or rehabilitation facility if the stay is not immediately preceded by at least a 72-hour long hospitalization.

Having been hospitalized for 72 hours or more does not assure or in anyway guarantee that a subsequent stay in a skilled nursing or rehabilitation facility will be covered by Medicare.

 

3.    How long will Medicare pay for my / my elder’s care in a skilled nursing care facility / nursing home / rehabilitation facility?

a.    Once transferred to a rehabilitation or skilled nursing care facility, your elder’s length of stay in such an institution will depend upon their qualifying medically diagnosed condition and their rehabilitation potential. 

b.    In any case, Medicare will not under any circumstances cover more than 100 days in a skilled nursing / rehabilitation facility. Their (Medicare-funded) stay will most likely last no more than two to six weeks.

c.    Once your elder either:

                                                                  i.    Reaches their rehabilitation goals, their maximum function, or realizes their rehabilitation potential (meaning they’re not going to get any measurably better),

OR

                                                                ii.    Reaches the reimbursement cap (Medicare pays a pre-designated amount of money to the nursing home.  This pre-designated amount is determined by the medically diagnosed condition(s) that precipitated your elder’s admission to the rehabilitation facility).

-your elder will be discharged from the Medicare reimbursed portion of their stay in the rehabilitation facility. 

This is not to say that your elder is in any way ready to go home and function independently, or that you are prepared and able to provide the care your elder needs.  This is only to say that Medicare is done paying for your elder’s stay in the rehabilitation facility.

 

4.    What are our options when the skilled nursing care facility / nursing home / rehabilitation facility says “It is time for discharge.”?

Your elder’s options will vary widely depending upon precisely three things:

·         Your elder’s functional independence (which boils-down to their physical mobility and their cognitive ability to function)

·         Your elder’s personal financial assets

AND

·         Your elder’s access to (unpaid) family caregivers.

 

a.    After completing a qualifying 72-hour long hospitalization (with or without a stay in a rehabilitation facility), your elder may qualify for Medicare covered home health care visits. 

b.    In order to be eligible to receive any Medicare reimbursed home health care visits, the elder MUST (by law) be house-bound.  This means that if your elder is capable of being transported in a car, a taxi, a bus, or a car service to appointments or even out to dinner, they cannot legally receive Medicare reimbursed home health care visits.

c.    Medicare-reimbursed home health care is often not consistent with the expectations of elders and their family caregivers.  Families often tell me they expected 24-hour per day, private-duty RN care.  Many family caregivers are upset when they learn they must care for their ailing elder in addition to employment and childrearing responsibilities.

d.    Medicare covered home health care consists of home visits by several different professionals including:

                                                                  i.    Physical, occupational and speech therapies.

                                                                ii.    RN home visits which last anywhere from 15” to two hours at the most.  This does not mean the RN is there to physically take care of your elder –as is often hoped. 

The Medicare-reimbursed RN visit is there to assess key health parameters including, but not limited to: 

Ø  temperature and

Ø  other indicators of infection,

Ø  heart rate,

Ø  blood pressure,

Ø  respiratory rate,

Ø  pulmonary function,

Ø  problems with pain,

Ø  effectiveness of the current pain control regimen,

Ø  strength,

Ø  mobility,

Ø  medication regime, side effects, adverse reactions, compliance with medication regimen, or problems with medications

Ø  provision of any necessary wound care, and

Ø  Education of the elder and any family caregivers regarding the provision of nursing care to the elder.

                                                               iii.    Nursing assistant bath services.  The nursing assistant will arrive at or around appointed times up to three times per week to assist the elder with bathing or showering.  This does not mean that the elder will not need to be bathed at other times.

Provision of any or all of the above home visits does not imply or in any way guarantee that the elder will be happy or satisfied with the quality of therapy, nursing care assessment, or bathing service provided.  Ultimately, it only means the Medicare-reimbursed home visits will be made, any progress towards goals documented (keeping in mind these goals established for your elder are for Medicare reimbursement purposes.  These goals may or may not be of any consequence to you or your elder), and any visits will be charged to taxpayer-funded Medicare.

e.    Any Medicare-covered home health care visits will continue until one of the following occurs:

                                                                  i.    Your elder is no longer house-bound.

                                                                ii.    Your elder has reached the maximum number of Medicare-reimbursed home visits –as determined primarily by your elder’s medical diagnoses..

                                                               iii.    Your elder has achieved the goals established for their care or therapy.

                                                               iv.    Your elder is no longer improving or otherwise measurably benefitting from the home health care visits.

The home health care agency cannot and will not provide Medicare-reimbursed home visits that fall outside ANY of the above conditions.  There are two very simple reasons for this:

First, the home health care agency cannot obtain Medicare reimbursement for any visits made outside of these above stated conditions.

Second, if the home health care agency does provide home health care visits that fall outside of these above stated conditions and bills Medicare for such visits, that home health care agency, its owners, administrators, and its nurses will have committed something called “Medicare fraud”.  Medicare fraud is a crime.  This crime is punishable by substantial fines, revocation of licenses, prosecution, and even imprisonment. 

Although exceptions can be made if the home health care agency is willing and able to both obtain the necessary approval and assume the potential risk of denial of coverage, exceptions remain just that:  exceptions. 

f.     After discharge from the Medicare-reimbursed stay in the skilled nursing facility and / or the Medicare home health care, Medicare may continue to cover out-patient therapy appointments with physical therapists, occupational therapists, and speech therapists as long as:

                                                                  i.    the patient continues to improve, and

                                                                ii.    has not exceeded their predetermined visit allotment. 

 

g.    Medicare does NOT cover appointments with nurses, and does NOT cover or otherwise pay for any nursing care services not addressed in qualifying Medicare RN home visits or Medicare nursing assistant bathing services.  

Once your Medicare reimbursed home health care visits are finished, you will have no further access to professional nursing care unless you either hire privately and pay out of your own pocket, or place your elder in a skilled nursing care facility.

h.    Through a separate provision in Medicare law, Medicare will continue to cover physician visits for Americans who are 65 years and older.

 

5.    What is Medicaid and how do I qualify for it?  

Medicaid does cover (pay for) long-term institutional nursing care for qualifying elders.  There are several things you need to know about what it means to “qualify” for Medicaid and a Medicaid-funded nursing home bed.  Because of the tremendous State-to-State variation, this information is very general and is likely not entirely accurate for every State.  Please consult with a specialist in your area, your local Medicaid office, and / or the Federal and State Medicaid web pages (LINK).

a.    Medicaid, like Medicare –is federally funded.  Unlike Medicare though, Medicaid is also funded and administered by the individual States.  So each individual State runs its own Medicaid program.  Medicaid qualification criteria and Medicaid-covered health care services therefore vary quite a bit from state to state.

b.    Medicaid is not an entitlement available to everyone.  Medicaid is designed to meet the needs of America’s financially indigent (poor).  These are the people who have completely run out of money and must rely upon the State for their care.  Medicaid is a safety net.  It is a flawed program and therefore vulnerable to abuses and misuses by some as well as missing or denying coverage for others who are more deserving, or who should be covered.

c.    Because there are substantial differences regarding Medicaid coverage of children and persons under the age of 65 who are suffering from severe and permanent disabilities (such as spinal cord injuries), I will speak here only of persons 65 and over who have not previously been beneficiaries of Medicaid.

d.    Because this information I’m providing on qualifying for Medicaid is a general guide, please use this information only as a starting point, not the ultimate source.  I am a nurse, not a social worker, a lawyer, or a State Medicaid advisor. 

 

QUALIFYING FOR MEDICAID IN YOUR STATE:

Please consult with the Medicaid advisors, social workers, and privately hired lawyers who are familiar with the specific Medicaid laws in your State.  The people working in your local Medicaid office –while knowledgeable about Medicaid eligibility in your State -are not financial advisors.  They CANNOT advise you on how to manage your money (if you happen to have any). Therefore, if you have money or assets in excess of that which is allowable for Medicaid qualification, I urge you to consult with certified, master's prepared social workers and with lawyers in your geographic area.

 

A privately hired lawyer or a social worker *can* give you financial and legal advise you about your particular situation and likely eligibility for Medicaid.  They can assist you in protecting what assets can be protected –primarily to prevent impoverishment of the (Medicaid recipient’s) spouse. 

 In some states, even if you are not yet financially indigent, you can assign assets to Medicaid and obtain Medicaid rates for your elder's stay in the nursing home.  The advantage to this is that Medicaid rates are substantially less (sometimes by half) than the private pay daily rates for the same nursing home bed.

Nursing homes do not (of course) like for people to take advantage of this option (in the States where such options are possible) -for obvious reasons -they make less money.

This is not something I would advise you to try to accomplish on your own without either substantial research about your State Medicaid laws and provisions, or without consulting with a certified, Masters-prepared social worker or an attorney.

Please, PLEASE be careful when choosing a lawyer, social worker, case manager, or other privately paid Medicaid consultant to guide you through this process.  If it sounds too good to be true, it probably is (too good to be true).  Medicaid fraud is a crime and such crimes are punishable by law.

e.    In general, in order to qualify for Medicaid (not Medicare, the federal health insurance plan for American elders, but Medicaid a federal and State-funded health insurance plan for the poor), an elder must first be deemed and officially designated “financially indigent”.  This means (in general, noting there is substantial State-to-State variation in what I’m about to tell you, and even more variation in how the various laws are interpreted):

                                                                  i.    An individual’s income cannot exceed a State-specified percentage of the federal poverty rate (LINK).  There is wide variation in how this is interpreted and what is and is not allowed.  The individual and couple’s annual income cannot exceed somewhere between $10,000 for an individual and $30,000 for a couple –depending upon the geographic location and the individual State’s laws and provisos.  Some States require lower annual incomes, others allow higher.

 

Many individuals assign their income to Medicaid in order to qualify to pay the Medicaid rates in a nursing home –which are consistently lower than out of pocket rates paid to the same nursing home.  Again, please consult with the specialists in your State! 

 

                                                                ii.    In general, an individual or a Medicaid-qualified couple may retain ownership of the following:

·         their house or primary residence (some states limit the value of that qualifying home to $500,000, others maybe less, and many states do not stipulated a limited value)

·         one car (again, some states stipulate a value on the car, most do not), and

·         a burial plot and funeral allotment (noting wide variation from one State to another, the burial allotment allowed is sometimes around $1500).

                                                               iii.    In general (noting there is tremendous variation from State to State and many, many ways of interpreting these limits), in order to qualify for a Medicaid-funded Nursing Home bed, an individual elder who is living alone can possess up to, but not exceeding $5,000 in assets over and above their home, car and burial plot.  Assets include (but are not limited to):

·         Bank checking accounts

·         Bank savings accounts

·         Stocks

·         Bonds

·         Annuities

·         Certificates of Deposit

·         Trust funds (revocable and non-revocable)

·         Real estate and land holdings

·         Second homes

·         Summer, weekend and vacation homes

·         Rental properties

·         Boats –including, but not limited to: yachts, sailboats, and motor boats

·         Businesses

·         Shops and stores

                                                               iv.    A couple can possess up to, but not exceeding $10,000 in assets (as defined above) outside of the value of their primary residence, their one car, a burial plot and funeral allotment.

f.     Financially qualifying for Medicaid-funded services does not imply or infer that Medicaid will indiscriminately or even necessarily cover an elder’s stay in a Skilled Nursing Facility, Assisted Living Facility, Adult Family Home, or Senior Living Community.  Like the financial need, the physical need for nursing care must be quite desperate to qualify for Medicaid-funded care.

 

I have seen, taken care of, and consulted with a very wide array of elders and their families.  Just about every single elder I have encountered residing in a skilled nursing facility (nursing home) who is on Medicaid –is really in a very desperate situation.

 

A few of the elders I have met on Medicaid do have wealthy children.  Most do not.  Filial liability laws do not exist in the United States, so adult children are not liable to pay for their parents’ welfare or health care costs. 

 

g.    Obtaining a Medicaid-funded nursing home bed is *NOT* under any circumstances an ideal or enviable situation to be in.  Medicaid-funding is calculated to be the minimum amount necessary to feed, house and provide basic nursing care for impoverished American elders -who are typically physically frail and disabled.  The nursing care provided to poor American elders in Medicaid-funded beds is only rarely ideal nursing care. Medicaid is a safety net for the poor, paid for by the US taxpayers.  It will never therefore be ideal.

C.   What about long-term care insurance?

Nursing home coverage by long-term care insurance policies varies quite widely.  Some Long-Term Care Insurance Policies cover virtually nothing -under any circumstances.  Others cover all or a substantial portion of nursing home care for many months.

All Long-Term Care Insurance Policies come with lots and lots of fine print. My best advice to you is to:

• *Read it VERY carefully.*
• Ask any and all questions you can think of, and
• Get any and all answers in writing -signed and dated by a person (preferably a titled executive or officer of the company) who can be held accountable in the event of a dispute.

Some of the Long-Term Care Insurance Policies I have seen paid-out, pay the co-pays on the Medicare reimbursed portion of the elder's stay in a skilled nursing or rehabilitation facility.

Other Long-Term Care Insurance Policies pay all or a portion of the daily rate in a skilled nursing care facility after the Medicare-covered portion of the stay is completed.

Others cover many things, but only under some arcane (almost unachievable) conditions.

Remember, insurance policies are gambles.  You are betting against yourself when you buy an insurance policy.  You are betting you will get sick and need the insurance.  The insurer is betting you will not.

Insurance companies exist to make money.  They are not charitable organizations.  They will pay precisely what they agreed to pay, under the precise conditions they agreed to pay, and no more.  To default upon such an agreement is a prosecutable offense.  

If you feel your long-term care insurance policy is not paying as agreed, AND you have exhausted your communication with the insurer and are still certain they are not holding-up their end of the deal, you can inquire about obtaining assistance from your State's Insurance Commissioner.

When is it time to consider nursing home placement? (1. Signs) by Catherine D'Ambrosio, RN, PhD

Addressing questions regarding: When is it time to consider nursing home placement of your elder?

by Catherine D'Ambrosio, RN, PhD                dambrosi@uw.edu 

This blog specifically targets many of the questions and decisions family caregivers face when considering nursing home placement for their elder. 

Having (and taking) the time to plan and consider your options and preferences in advance is much easier, and far preferable to making nursing home placement decisions in emergent, often compromised situations. 

I’ve organized this blog in-line with questions most often asked by elders and their family caregivers who are considering relocation to a nursing care facility.  The three questions most commonly asked when families inquire about nursing home placement are:

      I.        What are some of the signs that it may be time to being exploring nursing home placement? 

    II.        How much do nursing homes cost and who pays for nursing home care?

A.   When? 

B.   For how long? 

C.   Under what circumstances?

D.   Does Medicare cover nursing home costs?

E.   How do I qualify for Medicaid?

F.    What about long-term care insurance?

   III.        We only have so much money, so how do we select the best nursing care facility?

 

This blog entry addresses the first question of:

      I.        What are some of the signs that it may be time to being exploring nursing home placement?

There are several situations when institutionalization (or nursing home placement) of an elder becomes increasingly non-negotiable.  These situations include, but are not limited to the following: 

A.   Often the elder is living alone –without a family caregiver.  There are conditions when the elder’s health and safety are jeopardized by their inability to care for themselves.  Some key indicators include (but of course are not limited to):

1.    You walk into the elder’s house and it smells like a latrine. 

2.    The refrigerator contains only moldy and rotting food.

3.    You see evidence of there having been a fire in the kitchen.

4.    You notice a pile of boxed meals that have been delivered (by Meals-on-Wheels for instance) over the past few weeks –that remain boxed-up, unopened and uneaten.

5.    You notice vermin, ant and roach infestation.

6.    You notice that your elder has not showered or groomed themselves in a long time and their body and breath are both odiferous.

7.    You notice the elder has been incontinent and is still wearing clothing caked in dried urine and feces.

8.    Your elder is unable to get out of bed, or out of their chair without assistance.

9.    You notice a marked change in your elder’s orientation (to time, place and person) or cognitive status.

10. If your elder is newly confused and disoriented, or more confused and disoriented than they usually are.

11. You notice your elder has lost weight.

12. You notice your elder exhibits signs of dehydration.

13. You notice your elder is either out of pills, or has not been taking their prescribed medications.

14. You notice other signs of self-neglect, including forgetting or refusing to eat or drink, or not having food or drink available in their house to consume.

An elder who is not eating or drinking should be taken to see their primary care provider, to an urgent care clinic, or to an emergency room where they can be evaluated and treated if necessary.

Each of these possibilities are not always in and of themselves sufficient to deem the elder incapable of staying in their house.  These indicators (and many more besides) are however indisputable signs that your elder will now need routine support –in order to remain in their own home.  Any change in their medical status should be evaluated by their primary health care provider.

Additionally, elders have human and civil rights that must be considered and respected.  If your elder is competent to make their own decisions, you will not be able to forcefully remove the elder from their home, no matter what you think.  You will have to consider the elder’s willingness to relocate to another family member's house, or an institution (Retirement Apartment, Assisted Living Facility, or Skilled Nursing Care Facility).

Often the elder is living with their spouse or other family members, or is routinely cared for by family members living in close proximity.  Under such circumstances, indictors that it may be time to consider changing the elder’s living arrangements (i.e., long-term or permanent nursing home placement) include: 

B.   The primary caregiver becomes ill, incapacitated, or dies and the surviving elder cannot safely care for him/herself and has no children (or family members) available, willing, or able to take care of them, and does not have sufficient financial resources to set-up, manage, and provide necessary private duty nursing care.

C.   The family caregiver is physically and emotionally exhausted and no longer has the will, the physical strength, or the emotional capacity necessary to continue providing the elder’s care. 

D.   The elder is endangering themselves, their family, and anyone else living in close proximity (i.e., the same apartment or condo building) by burning things in the kitchen.  When an elder is burning food and empty pots because they cannot cognitively manage cooking, it is imperative some changes be made immediately (such as disconnecting the gas or power to cooking appliances when the elder is alone or unsupervised). 

Sometimes cognitively impaired elders will put inappropriate things on the stove, in the oven, or even in the microwave.  I have consulted with families whose elders have put odd items including plastic house plants, bags of chips (bag included), unopened cans of soup, and bottles and cans of soda pop, and into the oven, the microwave, or simply placed the item on a burning stovetop.  None of them (fortunately) resulted in a house fire, but *did* result in some pretty spectacular messes and often substantial damage to the kitchen.

E.   The elder is wandering outside the home, getting lost, and sometimes endangering themselves and others.

F.    The elder is routinely incontinent and the family caregiver cannot cope with the intensive incontinence and toileting care needs of the elder.  Situations that increase the complexity of incontinence care for family caregivers include:

                      i.        an elder’s refusal to wear incontinence under garments (diapers).  This is often the case when the incontinence occurs sporadically between periods of continence maintenance. OR

                    ii.        inability to self-manage these incontinence undergarments (change and clean themselves after an incontinent episode). 

                   iii.        An elder becomes frustrated, angry and humiliated by their incontinence and begins lashing-out with violent or other abusive behavior towards others.

                   iv.        The house begins to smell terrible because of frequent incontinent episodes on carpeting and upholstered furniture.

 

G.   The elder is violent or abusive.  If and when the elder is violent, particularly when assaultive behavior is unprovoked or seemingly inexplicable, the primary family caregiver (who is often a frail elder themselves) is quite likely to be at great and immediate risk of being harmed.  It is important to seek-out both help and treatment for any assaultive or violent behavior. 

Many (but certainly not all) primary healthcare providers can assist you and your elder when confronting violent or assaultive behavior.  Finding an effective way to remedy the violent behavior can extend the time your elder may be able to remain in their current living situation.  There are medications that can calm or stabilize the mood, or ease the tremendous fear the elder maybe experiencing as their cognitive ability to process the world around them slips away from their grasp. 

Another person you may be able to turn to for assistance with a violent elder is a master’s prepared clinical nurse specialist, -providing you can access such persons in your community.  Sometimes an elder's confusion about what to do when experiencing the sensation of a full bladder or the urge to defecate can precipitate violent behavior.  A Gerontological clinical nurse specialist could most likely assist you with these types of problems and guide you and your elder regarding ways to both eliminate violent behavior and minimize the impact of incontinence on your lives. 

If you have been injured by an assault, you may have no choice but to seek care in an emergency room.  Sometimes it is appropriate to call 911 and obtain immediate emergency assistance from the police and EMTs –who will likely transport you to a local emergency room.  The police and EMTs will certainly address your immediate safety needs, but they are not likely to be of assistance with exploring your options and making plans that suit your needs and desires.

H.   The primary caregiver is abusing the elder, including situations when the family caregiver is:

1.    Assaulting or otherwise physically harming the elder.

2.    Physically restraining the elder. -for example tying the elder to their bed or to their chair. (Often the caregiver’s intentions are not malicious, but perceived as a pragmatic (albeit misguided) way to:

a.    keep the elder from wandering,

b.    prevent falling,

c.    keep the elder from inadvertently starting kitchen fires, and

d.    contain incontinence messes to a single location.) 

Unfortunately there are dreadful consequences to using restraints:

a.    Restraints are psychologically damaging.  It is demoralizing and humiliating to be tied-up or restrained. 

b.    Restraints impair mobility and increase an elder’s vulnerability to:

                                                                      i.        Losing their ability to get out of the chair and to walk

                                                                    ii.        Place the elder at great risk of incurring pressure ulcers (bed sores) because the elder cannot alter their position.

c.    Restraints place the elder in much greater danger of injuries from either falling or injuring themselves while trying to escape from or remove the restraints.

3.    Torturing the elder.  Torture is -in every case, the wrong thing to do.  Torture is a crime, but it happens.  It can be an insidious process.  When working with a cognitively impaired elder, what sometimes begins as a tit-for-tat, or frustrating attempts to control undesirable behavior can devolve into a form of torture –because you (as a cognitively intact caregiver) will nearly always have the upper hand with a cognitively impaired or physically frail elder. 

You (as the elder's caregiver) may feel (maybe you *are*?) controlled and oppressed by your elder’s needs.  Oppression is a tricky business that evokes dysfunction even from highly functional individuals.  People who are oppressed in-turn, tend to be the worst perpetrators of oppression.  Oppression easily twists and distorts reality and one’s perceptions of their options.

Torture is a bad thing.  If you are torturing your elder or you know or suspect your elder is being tortured or abused by another relative or caregiver, YOU MUST take immediate and proactive steps to protect the elder.  It is time to change the elder’s caregiving situation –without delay.  If you cannot do anything else, call the police and report what is happening or take your elder to an emergency room and tell the nurse or doctor what is happening.

a.    Starving the elder or depriving the elder of water.  This (deprivation of food and water) is sometimes done with the intention of stopping the incontinence.  I cannot argue with the effectiveness of such an approach (because the elder *will* stop peeing and pooping if you don’t allow them to get anything to eat or drink -they will also eventually die from this), but this is not a humane solution to the problem.  This is torture and a crime.  You MUST change this situation so your elder is living where they have regular (three times a day) access to meals, and constant access to water.

4.    Embezzling the elder’s money and using the money for purposes other than the care of the elder.

Embezzling money, particularly from a cognitively impaired elder is often prosecuted as elder abuse –in addition to theft.  Sometimes families in an effort to protect the family’s financial assets from being used to pay for the elder’s nursing care –will get their cognitively impaired elder to sign documents liquidating assets.  Medicaid officials are responsible to the US taxpayers to ensure the tax money designated to pay for the care of the poor and destitute does not get divested from a wealthy elder and spent on (for example):

·         financing the remodeling a daughter’s kitchen,

·         to put in a built-in swimming pool in the elder’s son’s back yard, or

·         a new tennis court for the elder’s nephew.

5.    Stealing the elder’s belongings. (either for their own personal accumulation or fencing the items –this includes selling-off the elder’s possessions not only at pawn shops, but also on on-line auction sites).

Costs of Hiring Help for Continence Care by Catherine D'Ambrosio, RN, PhD

Cost of Hiring Help for Continence Care

by Catherine D'Ambrosio, RN, PhD          dambrosi@uw.edu 

The (single biggest), most expensive healthcare conundrum we face over the next half century is not how to provide or pay for high-tech medical procedures, sophisticated pharmaceuticals, or intensive nursing care, but how to provide and finance ongoing basic nursing care to the legions of elders successfully reaching advanced ages.

Our mortal vulnerability to infectious diseases have been substantially reduced over the past 150 years primarily through improvements in public sanitation such as public sewers, plumbed potable water and public health initiatives including immunizations, antibiotics, and access to safer, cleaner injury and episodic illness care.  Safer working conditions and childbirth advances have also contributed to the expansion of the mean human life expectancy.  More people can now expect to survive infancy, childhood and young adulthood.  Improved access to high-tech medical procedures, sophisticated pharmaceuticals, and intensive care nursing allow more of us to reach even older ages.

Despite being less mortally vulnerable to injuries and accidents, our physical function still continues to deteriorate with advancing age.  Forty percent of all elders over 75 years and over fifty percent over 85 years require some basic nursing care (assistance with eating, bathing, grooming, dressing, toileting and mobility).  Currently elders have only four options when they require assistance with these activities:

1.  Family caregivers

2.  Paid caregivers

3.  Institutionalization

4.  Neglect

This blog addresses the question of how much does it cost for the second option -private duty paid caregivers who come to your home to assist in maintaining toileting continence?

The real problem confronted by elders who are having difficulty maintaining their toileting continence and independence is that toileting cannot be reliably confined to particular appointments or times of day.  An elder who requires cognitive and / or mobility assistance to maintain their toileting continence will require constant access to rapidly responding nursing care.

Below is a conservative break-down of private duty nursing care costs followed by descriptions of each type of nursing care:

Conservative cost estimates for hourly in-home (private duty) nursing care

	per hourcost	24-hr/day cost	weekly cost	monthly cost	yearly cost	5-year cost	10-year cost	15-year cost
Nursing Aide *	$15	$360	$2,520	$10,800	$131,400	$657,000	$1,314,000	$1,971,000
Certified Nursing Assistant **	$20	$480	$3,360	$14,400	$175,200	$876,000	$1,752,000	$2,628,000
Licensed Practical Nurse ***	$30	$720	$5,040	$21,600	$262,800	$1,314,000	$2,628,000	$3,942,000
Combinationof RN (8hrs @ $50/hr) and LPN(16hrs @ $30/hr)	$37	$880	$6,160	$26,400	$321,200	$1,606,000	$3,212,000	$4,818,000
Registered Nurse ****	$50	$1,200	$8,400	$36,000	$438,000	$2,190,000	$4,380,000	$6,570,000

* A nursing aid is a care worker who has not completed the recommended 75 hour training course on the provision of basic nursing care.  The care they provide is typically not directed, designed, or directly supervised by an RN.  Depending upon their place of employment, they may or may not have access to professional nursing advice or supervision on the care they provide.

** A Certified Nursing Assistant (CNA) has -in most circumstances completed a two-week (75-hour) long vocational education and training course on the provision of basic nursing care.  Your nursing care plan is optimally written by an RN who has assessed your immediate physical needs and directly supervises the CNA's work.  In reality unfortunately, you and the RN may never meet and the nursing care plan may never be customized to suit your immediate individual needs and promote your highest level of function.

*** A Licensed Practical Nurse (LPN) has completed a one year long course on nursing care either at a community college or a technical college.  Many are expert at hands-on direct, non-invasive patient care, others work primarily passing medications and supervising nursing assistants.  Care provided by an LPN is optimally directly designed and led by an RN.  An LPN's practice is more tightly restricted than RN's and their educational knowledge and scope of practice is less broad

**** A Registered Nurse (RN) has completed one of three programs and passed a state examination demonstrating proficiency in the minimal amount necessary for nursing practice.:

• a three year-long diploma program (roughly 20% of all nurses), or
• a two to three year-long Associate's Degree in Nursing (ADN) degree at a community college (roughly a third of all nurses are prepared at this level), or 
• more than a third are university educated and have completed a Bachelor of Science in Nursing (BSN) degree.
• Ten percent of registered nurses have completed advanced (Master's) degrees in Nursing (in addition to their bachelor's degree), and around 1% have doctoral degrees in nursing.

Another problem is that too often people harbor century-old ideas about how much nursing care costs. When I owned a home health care agency, I frequently received calls from people who were first encountering incontinence problems and wanted 24-hour per day, 7 day per week RN care.  It was my sad duty at that time to tell my callers the bad news about how much private duty nursing care costs.  Every single person was flabbergasted by the cost of in-home private duty nursing care (see above).  Only a few had the means to afford private duty care.

When I asked my callers how much they expected to pay, it was then *my turn* to be flabbergasted.  I got many responses like the following:  

• "I expected 24-hour per day RN care to cost about $20 a day." (for those of you who don't have a calculator handy, that's about $0.83 an hour)
• "My parents are 75 years-old and they have set-aside $50,000 for their long-term care.  I expected that for $50,000" said the caller, "you would be able to provide 24-hour per day care to them starting today, and lasting until they die.  We would need an RN only during the day, the rest of the time a practical nurse would do just fine."  ($50,000 -no meager sum to be sure, would pay for just about 57 days of that level of care.)  
• "OK, so I can not afford nursing care.  I still need help with my parents.  Can you just import a couple Mexican gals to come take care of my parents?"  (did you say *import*? -like they're bananas?)  "I can not probably afford to pay them anything, but I *can* afford to maybe help pay for their airfare to get here.  They can eat the food in the house and we have space and a toilet in the basement where they can live."   

(You know, historically slavery has not turned-out to be such a good idea.  Clearly not everyone realizes such an arrangement would constitute slavery, and thus be illegal in the United States.  And indentured servitude, while perhaps a bit more nebulous than out-right slavery, would still violate a whole bunch of really good immigration and minimum wage laws.)

These were not *bad* people who are asking these questions.  These were generally caring individuals who were in way over their heads, trying (sometimes desperately) to help their aging and ailing parents.  And in many ways, the callers were right.  There surely are a lot of people who want to move to the United States and European countries from more economically depressed countries. 

Such potential immigrants are willing and even eager to leave their home, their family, their culture, and their language with the idea of being able to get rich, or at the very least be able to live a better life.  But if you think it through, even people who desperately want to immigrate to the US are not going to be interested in living in your basement as an unpaid, indentured servant, tending to your toileting needs and subject to your wants and whims.

Additionally, nursing care knowledge and skills are not in anyway innate or intuitive to women of limited means and good intentions.

Provision of necessary, sufficient and accurate basic nursing care is currently hamstrung by its complete dependence upon human labor.  Human labor is extraordinarily expensive.  The cost of providing necessary nursing care escalates with advancing age and accumulation of health fragilities.

The consistent and accurate provision of necessary and sufficient basic nursing care can and often does make the difference between an elder who functions independently in the privacy of their own home and an elder who is tied to a wheel chair, parked in an odiferous nursing home hallway, and diapered at the convenience of the institution’s (over-worked, under-paid, and under-appreciated) nursing assistants.

Need for Nursing Care -and the Ability to Pay for Nursing Care

An elderly individual’s escalating need for nursing care unfortunately corresponds directly with depletion of personal financial resources and exhaustion of income earning potential.  The median net worth of a 75 year-old American householder is $101,000 (including home equity), and $19,000 (excluding home equity). The median income for a 75 year-old American householder is $19,000.  

A single daily visit from a $10 per hour cash under the table unskilled caregiver will cost approximately $20 to $25 per day, or roughly $8000 per year.  

A certified nursing assistant who has completed a two week long course on basic nursing care will cost between $14,600 and $200,000 a year for that same two-hour long daily visit.  

Nursing care provided by registered nurses will cost between $36,500 and $657,000 a year depending upon the number of hours, the complexity, the geographic region, and the predictability of the care required.

The functional decline naturally occurring with advancing age combined with broad access to life-extending technology and sophisticated pharmaceuticals increases the probability elders will lose functional independence as they live longer with more fragilities and physical impairments. 

We as a society need to develop basic nursing care options that are not dependent upon human labor, that can address the actual ongoing day-to-day basic nursing care needs of elders experiencing functional decline, assisting the elder in maintaining their physical independence –without either bankrupting elders or leaving a legacy of debt to future generations.  

We need to expand the number of options for the growing number of elders (also younger people with disabilities) who are living through and despite illnesses, injuries, diseases and ailments with more physical fragilities, functional impairments, and cognitive challenges. 

Many elders can expect to live a decade or more with their functional impairments that render the elder dependent on the care of other people.  Not only is it difficult and undesirable for most of us to be in this position, it is financially beyond the means of all but a few of us.

I have detailed two other in-home options for long-term care including companion and intermittent nursing care visits.  Even these conservative cost estimates are staggering and well-beyond the means of most of us -at any point in our lives, much less after we are no longer able to reliably work and earn an income:

In-home Companion Cost Estimates	24-hr/day cost	weekly cost	monthly cost	yearly cost	5-year cost	10-year cost	15-year cost
Licensed companion (sleeps at night; limited care; no incontinence care)	$300	$2,100	$9,000	$109,500	$547,500	$1,095,000	$1,642,500
Unlicensed companion (sleeps at night; no care)	$150	$1,050	$4,500	$54,750	$273,750	$547,500	$821,250

Intermittent Nursing Care Visits	per visit cost	24-hr / day cost	weekly cost	monthly cost	yearly cost	5-year cost	10-year cost	15-year cost
Unlicensed, un-trained, un-insured assistant paid under the table for morning & evening home visits	$20	$40	$280	$1,200	$14,600	$73,000	$146,000	$219,000
Nursing Assistant (CNA) Morning & Evening home visits	$75	$150	$1,050	$4,500	$54,750	$273,750	$547,500	$821,250
RN Morning & Evening home visits	$150	$300	$2,100	$9,000	$109,500	$547,500	$1,095,000	$1,642,500

Retirement Apartments and Assisted Living Facilities typically offer fee-based nursing care services. Unscheduled nursing care services generally cost substantially more than scheduled services.  So receiving scheduled help with a shower or bathing three times a week will cost a lot less than unplanned shower assistance and incontinence clean-up occurring any time of day or night.  

At some point either:

• the incontinence frequency will exceed the capacity of the Retirement Apartment or Assisted Living Facility's nursing care capabilities and they will recommend your transfer to a skilled nursing care facility, OR
• the odor of frequent incontinence episodes will negatively effect or disturb the other residents and the facility will recommend a transfer to a skilled nursing care facility, OR
• the cost of accessing frequent unplanned nursing care at the Retirement Apartment or Assisted Living Facility will exceed the cost of a Skilled Nursing Care Facility.

 (Please see my blog on institutionalization costs.)

In (other sites on) this blog, I therefor propose and describe a series of system innovations and integrations designed to improve access to and delivery of basic nursing care assistance with toileting and mobility to community-dwelling elders by combining existing systems and technologies to develop Personal Nursing Care Robots.

Elder Incontinence and Mobility Assistance by Catherine D'Ambrosio, RN, PhD

dambrosi@uw.edu

As the lead family caregiver, one responsibility you have is to determine the precise and immediate cognitive and mobility assistance required by your elder. This blog entry discusses the mobility assistance determination.

Physically Helping Your Elder To and From the Toilet

Many elders require mobility assistance getting to and from the toilet.  Sometimes the help they need is entirely within the physical capabilities of available family caregivers.  Other times the elder's mobility needs are more intense than what can be managed by family caregivers who are immediately available.  And sometimes no one is reliably available to assist the elder with getting to and from the toilet, bed, and chair.

When assisting an elder with other activities of daily living (such as eating, bathing, grooming and dressing), any necessary assistance can generally be confined to specific times of the day, -and even scheduled on particular days.

Providing toileting assistance cannot however be reliably scheduled, appointed, or otherwise confined to particular times of day.  Toileting needs are generally unpredictable.  The urge to use the toilet can emerge suddenly and without warning virtually any time of the day or night.

The uncompromising urge to use the toilet can compel your elder to hasten their pace and increase their likelihood of falling -thereby sustaining injuries that can represent certain doom.  Some elders can never recover the function lost in a simple injury such as tripping over a throw rug while hurrying to the toilet. Ultimately when an elder's ability to manage their toileting needs is compromised, so is their ability to remain in their own home.

This blog entry is designed to improve your awareness of your elder's immediate mobility needs and provides some guidelines for adapting their home and your care to improve their safety.

Using a form of Prompted Voiding* a behavioral modification technique (reference Schnelle, Ouslander, Hu) where toileting is offered either hourly or every two hours can improve your elder’s continence and reduce the number of unexpected interruptions in a caregiver's day.  Please see my blog entry entitled Preventing Incontinent Episodes and Keeping Your Hands Clean for detailed description of the prompted voiding technique and the blog entry entitled Adapting the Prompted Voiding Technique to Your Elder's Needs and Your Capabilities for adapting the prompted voiding technique to your elder's immediate needs.

Some of the guidelines may seem obvious, but in my 20 years of experience consulting with elders and their family caregivers, it is often the most obvious issues that are ignored and become problematic.

Providing optimal mobility assistance to a frail elder is not an intuitive process for all family caregivers.  Many family caregivers are overwhelmed when confronted with decisions regarding how to best assist their elder to the toilet.

 

A.   First, in order to provide your elder with safe and effective mobility assistance to and from the toilet, you need to figure-out two things:

1. What kind of mobility assistance does your elder require?  I have classified mobility assistance into 5 groups:
1. Independent (no physical assistance required)
2. stand-by assistance (not actually touching the elder while in transit, but remaining within arm’s reach of the elder)
3. balance assistance (in constant physical contact with elder, but not bearing any of their weight)
4. weight-bearing assistance (bearing some of the elder’s weight –not lifting)
5. mechanical lift (using a mechanical lift is often appropriate under the following circumstances:
1. the elder is not capable of bearing any of their own weight, or
2. the elder’s weight-bearing need exceeds the weight-bearing capacity of available caregivers).  Within this group there is wide variation ranging (for example) from a 90 pound elder with a 25% (22.5 pound) weight-bearing need whose family caregiver is a 100 pound elder with arthritis, degenerative joint disease, and cardiomyopathy to a 400 pound elder who has a 50% (~200 pound) weight-bearing need and has three caregivers available to assist with transfers.

 

2. Intensity of assistance:  How many people are necessary to provide this mobility assistance (can range between 0 and 3 persons).  (Please note:  I have yet to meet anyone who has three people who are constantly ready, willing and able to help them to the toilet.)

Determining the precise technique most appropriate and intensity required to safely assist your elder to and from the toilet can be a complex process.  I cannot see you or your elder, so I cannot determine or otherwise tell you precisely what would be the most appropriate type or intensity of assistance.

The type (independent, stand-by assist, balance assist, weight-bearing assist, or mechanical lift) and intensity of assistance (ranging between 0 and 3 people), although generally consistent for a particular elder, is often not static.  Sometimes the type or intensity of assistance required will vary depending on the time of day.  Fatigue (for example) often intensifies the assistance necessary. 

Many things can alter or change your elder’s mobility assistance needs, including:

Ø  A health incident (ranging from a cold or flu to a stroke or a heart attack)

Ø  Balance

Ø  Mobility

Ø  Flexibility

Ø  the presence of pain

Ø  medications

Ø  many others besides

Therefore, consulting with a registered nurse who specializes in Gerontological Nursing, elder rehabilitation and mobility assistance can be a worthwhile investment.  Such a nursing care consultation will not alter your elder's ongoing needs.  What a nursing care consultation *can* do is serve to improve the accuracy, efficiency and effectiveness of the ongoing care you provide to your elder.

Because many people cannot afford or access a nursing care consultation, I want to help you figure-out what kind of help your elder may need.  Ask yourself and your elder the following questions, then observe your elder’s movement in the following circumstances:

Ø  How does your elder currently get themselves from one place to another? 

Ø  Does your elder use a cane, a walker, a wheelchair, or other mobility assistance device to move about in their home?

Ø  If your elder uses a walker or a wheelchair, does it easily fit all along the paths your elder takes from one location to another?

Ø  Is your elder certain of how to use their current mobility assistance device?  (Proper use of a mobility assistance device –while not terribly complicated, is not generally intuitive either.  Improper use of mobility assistance device can easily result in devastating injuries.  It is important to seek and obtain information on the proper methods of using your current mechanical assist device.)

Ø  Can your elder go from a lying to a sitting position without any help from anyone?

Ø  Can your elder swivel their legs off the bed without any help from anyone?

Ø  Can your elder go from a sitting to a standing position without any help from anyone?

Ø  Can your elder pivot (turn-around) without any help from anyone?

Ø  Can your elder go from a standing to a sitting position without falling and without any help from anyone?

Ø  Can your elder get into and out of their bed without needing help from anyone?

Ø  Can your elder get on and off the toilet without needing help from anyone?

Ø  Can your elder effectively wipe themselves after toileting without help?

 

B.   Next (second),you need to determine whether (or not) the required number of people necessary to provide mobility assistance to your elder are:

1. reliably available
2. physically capable of providing the required assistance
3. actually *willing* to assist the elder with their toileting needs.

So if your elder is completely alone every day and night and is unable to get themselves out of bed, to the chair or to the toilet without the assistance of another person, then perhaps it is time to consider relocating your elder to your home, another family member's home, having a family member move-in with the elder to assist them with toileting, or relocating your elder to a nursing care facility.

 

C.   Next, assess the path your elder most commonly takes to and from the toilet.  Take a careful look at your elder's most common locations including their bed, their kitchen chair, their favorite living room chair or sofa, their favorite spot on the front porch, et cetera and the path your elder most commonly takes between their favorite or most common locations.  Ask yourself the following questions:

Ø  Does any of the furniture need to be moved?

Ø  Can any of the furniture be moved or rearranged? 

Ø  Are there sturdy grab-bars directly adjacent to your elder’s bed, toilet, kitchen chair, and living room chair?

Ø  Has your elder recently suffered a fall or other injury while moving from one location (i.e., bed, chair, toilet) to another?

Ø  Are you concerned that your elder is likely to fall or sustain an injury while moving-about?

Ø  Has your elder’s mobility (their ability to move about in their house) changed recently?

 

 

D.   Fourth, modify the path your elder most commonly takes to and from the toilet.  Take a careful look at your elder's most common locations including their bed, their kitchen chair, their favorite living room chair or sofa, their favorite spot on the front porch, etc.

 

Consider the appropriateness of the following:

1. Obtaining a bedside commode and place it in a convenient location near your elder's bed.  Keep in mind that the bedside commode will need to be emptied and cleaned at least daily -without fail.  It is also a good idea to keep toilet paper near the commode.

 

2. Install an adaptation on the toilet with arm rests and an elevated seat.  Make sure any adaptations are secure and cannot be pulled from the wall.

 

3. Install hand-grip bars on the walls adjacent to favored sitting places and along the walls leading to and from the toilet.

 

4. Remove ALL throw rugs and clutter along the paths between the bed, favorite sitting places, and the toilet.

 

5. Consult with nursing, physical and occupational therapists (as access dictates) to determine whether your elder needs, or would otherwise benefit from a mobility assistance device such as a cane or a walker.

Insurance coverage of these modifications and appliances will vary.  Unfortunately insurance coverage is based primarily upon allopathically (MD) diagnosed conditions -rather than upon your elder's precise nursing care needs.  There is some variability among insurance plans but often coverage is dependent upon the temerity and tenacity of the elder's advocate.

Nursing care consultations are not generally covered by insurers. 

Ongoing, chronic (sometimes called custodial) nursing care -is generally NOT covered by Medicare or other insurers. 

Medicaid does cover chronic long-term nursing care –but only after the elder has been legally declared financially indigent.  Please see my blog on Costs of Long-Term Care.

If your elder:

• cannot reliably and independently balance or bear all of their own weight -with or without a mechanical assist device (such as a cane or a walker), OR
• does not have constant and continuous access to sufficient numbers of family caregivers who are willing, able, and immediately available to provide toileting assistance, OR
• the financial means to pay for private duty nursing care,

then your elder's ability to remain alone in their own home is in immediate jeopardy.  Please see my blog on Incontinence -When is it time to consider nursing home placement? 

Posted at 15:53 in Elder Incontinence, Family Caregiving | Permalink

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Family Caregiving: Assembling and Leading Your Family Caregiving Team by Catherine D'Ambrosio, RN, PhD

Family Caregiving:  Assembling and Leading Your Family Caregiving Team

by Catherine D'Ambrosio, RN, PhD         dambrosi@uw.edu 

Being a family caregiver can be enjoyable, rewarding, and fulfilling.  Being a family caregiver can also be frustrating, exhausting, thankless, humbling, -and even humiliating.  Assembling a team of family members and friends to help you can make all the difference between these two ends of the spectrum.

Assembling and managing your family caregiving team takes time, effort, energy, and an uncompromising willingness to distribute praise and thanks.  You will want your family caregiving (FCG) team members to know what to do, how to do it, how to recognize and identify when there is a problem, and what they need to do about it.  You also want them to know how much you appreciate their efforts, so they feel good about what they are doing to help you, and return another day to help you again.

Below is a list of TIPS for assembling your family caregiving team:

• Be clear and precise about:
• • The specific calendar dates when you need their help (i.e., when you have a doctor appointment or test scheduled for yourself).
  • The days of the week when you routinely need their help.
  • Specify the precise time of day you need them to arrive, the time you expect to be leaving (for your appointment or what ever), and the time you expect to return (to relieve them).  For example:
  • • If you are working Tuesdays and Thursdays from 10 AM until 6 PM, then you might need them to arrive between 8 AM and 9 AM.  Tell your FCG team member that they can expect to be able to leave by (for example) 6:30 PM.
    • If you have swimming classes on Mondays, Wednesdays and Fridays from 9AM until 10AM, then you might need your family caregiver team member to arrive by 8 AM so you have time to brief them before you leave at 8:30 AM.  Specify also the time they can expect you to return (for example, by 10:30 AM).
  • Be respectful of their time.  Make sure you return (to relieve your FCG team member) by the appointed time, or communicate directly with them when you are running late.  If you have a doctor (for example) who is not respectful of *your* time and is always running late (and negatively affecting your credibility with your FCG team), then find another doctor.
  • Make a clear list of what your family caregiving (FCG) team member will need to do to take care of your elder.  For example:
  • • Making a meal -such as lunch for both themselves and your elder.
    • Reminding your elder to use the toilet every hour.  Coach your team member on how the reminder is best worded, and what kind of physical assistance they need to provide for your elder.
    • Physical activity is very important to maintaining health.  If it is appropriate and safe for your elder and your FCG team member, ask your FCG team member to go for a walk with your elder.  Be specific about precisely how far your elder can go, for how long, and how far they can be from the toilet, should they need to use it.
    • Get out a game (such as Yatzi) that your elder enjoys playing and specify (for your FCG team member) any particular adaptation to the rules necessary for your elder. For example, if you elder likes to play *Clue*, when an allegation is made, place the clue card on the board rather than expecting your elder to mark the evidence on their clue sheet.
    • Write down the time and channel when your elder's favorite programs are on the television.
    • Speech, occupational and physical therapy exercises that need to be done (depending on your team member's capability, familiarity with how to do these, and their willingness to do them with your elder).  This will mean also that you will need to review this material with your FCG team member in advance and assess their willingness to do these tasks, their ability, and their respectfulness toward your elder.
  • Make sure you have all the necessary ingredients for your family caregiving team member to make any meals they will need to prepare.  For example, bread, cold cuts, lettuce, tomato, mustard, and juice to drink.
  • Make sure there is also enough food for your family caregiving team member to eat.
  • List the problems that they might encounter while they are there, and precisely what they need to do in the event of one of the problems.
  • Leave a clearly written list of contact numbers your family caregiving team member can call in the event of a problem.
     
• Make a list of ALL possible and potential Family Caregiving (FCG) team members.  Family can often be defined broadly to include:
• • spouses
  • ex-spouses
  • children
  • step-children
  • parents
  • siblings
  • half and step siblings
  • grandchildren
  • cousins
  • in-laws
  • friends
  • church members
  • neighbors
  • co-workers and former co-workers
  • club members (such as Rotary or VFW colleagues of your elder)
     
• Prepare yourself for being turned-down by some of the people you most desire help from, and receiving assistance from others from whom you did not expect to get help.
• • Not everyone will jump at the chance to help with an elder who is struggling to maintain continence. 
  • It may be difficult to anticipate exactly who will actually show-up and be present to assist you in caring for your elder.
  • If you DO NOT want help from a particular person (for what ever reason:  trust, reliability, embarrassment, or you just don't like them), then DO NOT INCLUDE THEM on your invitations to help with your elder. Including such persons on your invitations (to help with your elder) will send mixed messages and serve only to confuse them and complicate your own life. 
  • Many people will *SAY* they want to help, but in fact may not be at all willing to help. Sometimes these same people do not know how to say *NO.* or how to communicate directly. These people will complicate your life because they will be *sending YOU* these mixed messages.
  • Keep in mind, people ultimately do what they want to do.  If they don't want to help you, they (these potential FCG team members) will likely give you lots of reasons and excuses for why they cannot help you with your elder.  Some will for example,
  • • List all of the other things they have to do that particular day.  They will tell you how burdened they are with going to their children's school, sporting and scout events, their church group meetings, and their other family and friend responsibilities they must attend to.
    • The most cruel and inconsiderate will commit to a particular day and time (when you will rely upon them), but then either cancel at the last minute or never show-up. 
    • Some will put you off by saying they have to "check their calendar" or "will have to get back to you later", but then never call.
    • Some will dissemble when you invite them to help you.  They may ignore the question, pretend they did not hear it, or act as if they do not understand what you are asking. 
    • Others will just avoid you entirely.
• Assess what each team member is capable of doing -and willing to do.  You are the team leader.
• • Do not place your elder in a vulnerable position where they must rely upon someone who is unwilling or unable to provide the necessary assistance.
  • Also be mindful of how respectful each team member is of your elder's dignity.  
  • Do not place either your elder or your FCG team members in danger.
  • Do not expect (for example) your elder's 95 pound, 85 year-old sister with an unsteady gait, degenerative joint disease and bad eyesight to help your 200 pound elder -who needs weight-bearing assistance -to get to and from the bathroom.  This sibling may well be able to fix a sandwich and ensure your elder is reminded to use the toilet, but physically assisting your elder to the toilet may place them both in danger.
• Identify contributions of each team member and be sure to express your appreciation.
• • I know it is difficult -because you are doing so much with little or no acknowledgment of all your hard work, but it is imperative to your team-building efforts to recognize the efforts and contributions of others.  
  • Be sincere and genuine.
  • Be gracious and humble.  Your FCG team member has taken their time and effort to help you in a difficult situation.  Your appreciation can make all the difference.  
     

We Need Elder Care Robots Now by Catherine D'Ambrosio, RN, PhD

We Need Elder Care Robots Now

by Catherine D'Ambrosio, RN, PhD       dambrosi@uw.edu 

The old man sits in his living room chair weeping bitter tears.  His pants are soiled with urine and feces, oozing through his clothes and into the upholstery.  His daughter will not arrive to help him out of his chair and filthy clothes until she gets off work, four hours from now.  The old man knows his daughter will be disgusted when she arrives.  She had plans to go out this evening.  Instead she will be helping him get showered, picking the clumps of feces from inside his clothes, doing laundry, and trying to scrub the excrement out of the upholstered chair.  It is already the third time this week.

Every day millions of elders are suffering in situations like this.  We can expect it to get worse as more of us are able to live through and despite illnesses, diseases and injuries, successfully surviving beyond our ability to independently care for ourselves.  Very few people can afford consistent access to decent, basic nursing care that helps them to maintain their function, mobility and toileting continence.  Fewer still are comfortable accepting help with toileting.  It is embarrassing and demoralizing to be dependent upon other people to help with this very private function.

Conversely, attending to another person's toileting needs as a primary and consistent responsibility is beneath most people.  Assisting elders to maintain toileting continence is messy, smelly, labor-intensive, repetitive, underappreciated, and ultimately unpredictable.  Even people desperately in need of a job can find that assisting other people with their toileting needs is degrading and demoralizing.  The caregivers -whether they are family members or paid caregivers are going to want and need to seek a higher function, to serve a higher purpose than tending to the toileting needs of another person.

Nearly half of all American elders over the age of 75 years require basic nursing care assistance with activities of daily living (eating, bathing, grooming, dressing, toileting and mobility).  Most elders cannot however afford to pay for this basic nursing care.  As a consequence elders are becoming ever more reliant upon family caregivers who themselves must then balance their work requirements, relationships, child-rearing responsibilities, social life and sleep with the need of their elderly family members.  As a result of these and many other factors, increasing numbers of elders are vulnerable to neglect of their basic nursing care needs -and the terrible consequences upon their health, function, independence, dignity and self-respect.

Unlike many other professions, no significant amount of automation has ever occurred to reduce the cost of or improve the efficiency of basic nursing care delivery.  This e-book:

1. describes the problems encountered by elders and their family caregivers who are trying to maintain continence in the privacy of their own homes, and 
2. explicates the inevitable solution:  Personal Nursing Care Robots.

Family Caregiving and Toileting Assistance: Answering Some Questions by Catherine D'Ambrosio, RN, PhD

Questions on Family Caregiving and Toileting Assistance

by Catherine D'Ambrosio, RN, PhD      dambrosi@uw.edu 

Supporting an elderly family member's toileting continence is a very important responsibility.  It is also however labor-intensive, time consuming, unpredictable, -and sometimes thankless, unpleasant, irritating, provocative, and even dangerous.  Maintaining continence is essential to your elder's self-esteem, pride, and dignity.  Preventing incontinence is also imperative to your elder's healthy, well-bing and their ability to stay in their own home.  Incontinence that cannot be self-managed is the single biggest reason for institutionalization (nursing home placement) of elders.

Is incontinence a normal part of aging?

No.  Although the risk of incontinence increases with advancing age, incontinence is NOT a normal part of the aging process.  Any incontinence should be evaluated by a qualified professional -optimally by a board-certified urologist- -prior to purchasing large quantities of incontinence undergarments.  Some people suffer from multiple forms of incontinence.  Some incontinence problems can be resolved with surgery.  Other types can be effectively treated or reduced in frequency and severity with daily medication.  Other types of incontinence can be effectively managed through the use of behavior modification.

What causes incontinence?

Many things can cause or precipitate incontinence (ranging from infection and dehydration to a prolapsed bladder, enlarged prostate, and detrusor (bladder) muscle instability).  Some medical and surgical treatments can resolve the incontinence entirely.  Other medical and surgical treatments can only lessen the severity of incontinence for some individuals under particular circumstances. 

Some types of incontinence are caused by mobility and / or cognitive impairments (problems).  Other types of incontinence are made worse by mobility and / or cognitive impairments.  Incontinence that is caused by -or made worse by cognitive or mobility impairments are called "functional incontinence".

So while your elder:

1. may have a normal bladder, or
2. may have had a bladder surgery to correct a problem that was causing incontinent episodes, or 
3. maybe getting medication that might lessen the severity of their incontinence, 

the incontinence may still be a problem.

WE HAD THE PROBLEM FIXED WITH SURGERY AND TREATED WITH MEDICATION EVERY DAY.  SO WHY IS MY ELDER STILL INCONTINENT?

Incontinence is often still a problem after surgery and despite being on incontinence medication because your elder may have "functional incontinence" (a nursing care issue) on top of their medically or surgically-treatable incontinence.

Functional incontinence is defined as incontinence caused by physical access or mobility problems, or cognitive impairments -such as stroke or dementia that prevent or impinge upon an individual's ability to get to the toilet and use it appropriately in a timely manner.  Functional incontinence can exist independently, worsen the effects of other forms of incontinence, or continue to persevere after other forms of incontinence have been effectively treated.

Being diagnosed with something like "detrusor muscle instability" and treated with incontinence medication, or having the prostate removed or prolapsed bladder repaired isn't going to affect your elder's ability to get up out of bed and safely get to the toilet.  Likewise, if your elder is confused -because for example, they are suffering from some form of dementia, the incontinence medication is not going to help your elder figure-out how to resolve the sensation of a full bladder.  The incontinence medication doesn't help your elder figure-out what steps they need to take when they feel the urge to urinate or have a bowel movement.

Once an elder requires routine assistance with toileting, they have only FOUR options for obtaining toileting assistance:

1. Obtain toileting assistance from family caregivers.
2. Hire and pay nursing assistants (out of pocket money) to provide toileting assistance.
3. Leave their home and enter an institution -such as a nursing home.
4. Suffer the deleterious (bad) effects of neglect.

Because most elders desire to remain in their own homes and cannot afford to pay for private duty care, by the time they need assistance with toileting, elders are entirely dependent upon their family caregivers. Family caregivers are often carrying many heavy loads and managing a wide range of responsibilities including:

1. raising their children,
2. managing work responsibilities,
3. maintaining spousal relationships,
4. managing their household, and
5. often tending to the needs of more than one elder
6. routinely spending time commuting between their obligations and responsibilities

Determining how best to help your elder to and from the toilet can be a very complicated process -but if it is done correctly- -can make life easier for all parties and postpone or even prevent your elder's need to ever be institutionalized.

There are two areas where your elder may need your assistance to maintain their functional toileting continence: Cognition and Mobility.  An elder's physical mobility needs and their cognitive prompting needs around toileting cannot necessarily be predicted by or from each other.  So while some elders require detailed cognitive prompting and minimal physical mobility assistance, other elders require minimal cognitive prompting and intensive physical mobility assistance to get to the toilet.  Other elders require both detailed cognitive prompting and intensive physical mobility assistance to get to the toilet.  The easiest elders to assist are often (but not always) elders who require minimal prompting and minimal physical mobility assistance.

Cognitive Assistance:

There is a wide range of cognitive assistance your elder may need in order to support and maintain their toileting continence.  Too little cognitive guidance can be confusing and frustrating for all parties.  Too much (cognitive guidance) can be labor-intensive and time-consuming for you (as the family caregiver), and irritating and even provocative for your elder.  

Determining the optimal level of cognitive support can be a tricky business and the amount can vary a bit depending on the time of day and other factors.  A substantial change in the amount of cognitive prompting required for a successful toileting episode can be an early indication of bigger problems (such as delirium) that need to be addressed. 

1. Some elders need only the question:  "Do you need to go to the toilet?" and require no further cognitive prompting.  They know exactly what needs to be done to get to the toilet.  They still may need physical assistance, but you won't need to narrate each step.
2. Some elders may need additional prompting after the initial question of "Do you need to go to the toilet?"  Such as:  

• "Stand-up." 
• "Walk this way."  
• "Step-up here."
• "Watch your step here."
• "Turn around."
• "Pull your pants down."
• "Pull your underwear down."
• "Sit-down."
• "Its OK to go now."
• "Are you finished?"
• "Wipe yourself"
• "Pull your pants-up", etc.

3.  Others require even more intensive prompting with continuous feedback and redirection.

Cognitive prompting can be the most challenging component of assisting the elder to the toilet, requiring time, kindness, patience, 

I. Preventing Incontinent Episodes and Keeping Your Hands CLEAN! by Catherine D'Ambrosio, RN, PhD

Modifying Prompted Voiding to Meet Your Elder's Needs and Your Capabilities

by Catherine D'Ambrosio, RN, PhD     dambrosi@uw.edu 

This to-do list is most effective in preventing incontinence when performed every hour (while your elder is awake).  Because the process (of assisting a frail elder to maintain their toileting continence) can be very labor-intensive and family caregivers do not always have enough time, the steps below can be performed every other hour and still be effective in reducing how often a frail elder has incontinent episodes.

1. Set a timer for an hourly (or every two-hour) reminder to yourself.
2. At the top of each hour, ask your elderly family member if she is wet (with urine), soiled (with feces), or clean and dry.
3. Physically check for wetness or soiling and:
4. 1. Give feedback (to your elder) about what you have found, -for example, "You are wet.", "You are soiled.", or "You are dry."
   2. If your elder is dry, add a positive verbal feedback to your findings.  -for example:  "You are dry.  Good job!" or "Excellent!  You are dry."
5. Ask your elder if she needs to use the toilet.  You may repeat this question up to three times if she initially refuses.
6. If your elder responds "Yes.", then assist her to the toilet.  {Figuring-out how much physical and cognitive assistance your elder needs -and how much assistance you are (physically and emotionally) capable of providing  -can be a bit complicated.  (How much assistance is the right amount and type of assistance?)}
7. If your elder makes it to the toilet and successfully uses it (urinates and / or defecates into the toilet), then:
8. 1. make a positive comment -such as: "Excellent!" or "Good job.", then
   2. assist her (as needed) to wipe, pull her pants up, and return to her bed, chair or sofa
   3. inform your elder you will check with her again at the top of the next hour about whether or not she needs to use the toilet at that time. 
9. If your elder is dry and responds "No." to your question about whether she needs to use the toilet, do not prompt any further.  After telling her "You are dry.", inform her you will be checking with her again in an hour regarding whether she needs to use the toilet.
10. If your elder is wet or soiled and responds "No" to your question (prompt) about whether she needs to use the toilet,
11. 1. tell her she is wet and / or soiled.
    2. change her clothing and linens, and
    3. cleanse skin as per usual routine.
    4. try not to say anything negative regarding the incontinence to your elder.  (Your elder is most likely already humiliated and quite frustrated with herself.)
    5. tell her you will check with her again at the top of the next hour about whether she needs to use the toilet.
12. If your elder has an incontinent episode on her way to the toilet,
13. 1. assist her to the toilet to finish urinating and / or defecating
    2. assist your elder to clean herself up, and clean any soiled areas
    3. try not to say anything negative regarding the incontinence to your elder.
        
14. Keep a log (link to page here) of what happens each hour. 

This to-do list is based on decades of nursing care research on maintaining and improving continence among frail, cognitively impaired elders in nursing homes.  The seminal studies were initially conducted by researchers named Schnelle, Ouslander and Hu beginning in the late 1980's.  This to-do list -or some variation on this to-do list is commonly called "prompted voiding". 

If you -as a family caregiver are able to provide prompted voiding and support your elder's continence, you are providing a higher level of continence care than what can be provided in all but the most expensive nursing homes.

Most nursing homes cannot provide even "every two hour prompted voiding" (much less hourly prompted voiding) to support every elder's continence.  Prompted voiding is simply too time-consuming -and therefore too expensive.  It takes (on average) 60 minutes of specially-trained nursing assistants' time to provide prompted voiding and support an elder's continence each day.  It takes only 20 minutes out of each day of nursing assistants' time to diaper an incontinent elder.  

Because prompted voiding is more labor-intensive and requires special training of the nurses and nursing assistants, it is more expensive than what most nursing homes can afford to provide.  Only very expensive nursing homes with very high nursing staff to patient ratios can perform prompted voiding on every eligible elder.