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.
