By Jeannette Franks, PhD, a passionate gerontologist who teaches at University of Washington and Bastyr University. She is the author of a book on assisted living and numerous articles.
Businesses often approach tough issues by scheduling a meeting of those most knowledgeable and concerned. Successful academic departments at every prestigious university hold monthly meetings. Governments can break through imponderable dilemmas via well-planned and appropriately attended meetings.
There are various barriers, real and imagined. Geography is a big one-often families are widely dispersed across the country. Lives are already busy and often overscheduled without adding yet another commitment. Paid caregivers might not want to donate their time to ponder the issues; families may feel it is too expensive to pay them for meeting time. Also, it’s easy to think, “My sister would never agree to a meeting.” But have you asked her? Families can be so heavily burdened by the responsibilities of caregiving that it might be surprising what people will readily agree to if it might be an improvement on the status quo.
Bringing the family and support network together to discuss a loved one’s changing situation and available options is a crucial step in elder care planning and making appropriate choices.
Whether or not there are specific problems to solve, sharing information and airing thoughts will be productive. Often family members may feel that they aren’t doing enough, when in fact an individual might be doing too much. It is also typical for siblings or other caregivers to feel that individually they are doing more than his or her share and someone else is not.
Often these roles are influenced by culture, gender, and birth order. For example an adult son may be quite willing to mow mom’s lawn and totally turned off by the idea of bathing and toileting her-that’s woman’s work! In fact it’s easy for almost anyone to handle yard care but it takes significant physical and emotional strength to help a disabled person with personal care. It’s also more difficult for a man to help a woman and vice versa with intimate tasks such as bathing.
Caring for a frail older person is never easy. Holding a caregiver/care receiver meeting is almost always going to improve the situation if it is well planned, well attended, and conducted appropriately.
Invite at least three or four (confirmed attendees) and a maximum of approximately ten. Of course an important person to include is the loved one concerned, even if it means holding the meeting in a hospital room or with a person with profound Alzheimer’s. Issues such as hearing loss, dementia, or reluctance to acknowledge or discuss the problems are special challenges.
Some families may consider it inappropriate to include the loved one concerned, perhaps because the disabilities of that person make it difficult to discuss the situation in front of him or her. In addition, American culture has a tendency to leave out older people, just as you might exclude a child from financial discussions. Also, in some families cultural or traditional taboos, such as discussing death in front of the dying person, preclude inviting him or her.
However, I personally prefer to respect the choices, dignity, and autonomy of individuals, regardless of age or frailty, and believe that including the loved one concerned would produce the most informed and beneficial outcome. Each family is different, so you must decide what works within your family dynamic, but it’s important not to assume that a meeting about a person means that that person should not be there.
Direct professional caregivers are sometimes overlooked or excluded. It’s possible that the housekeeper who cleans once a week may know the most about relevant issues, such as incontinence, which the family is totally unaware of.
Perhaps invite neighbors and old friends, as well as all available family members. For geographically wide-spread friends and family, you might consider setting a date near a holiday or birthday, so folks have time to fly and also share a Thanksgiving or 4th of July.
Depending on your family’s spiritual beliefs, it can be helpful to include a religious advisor such as a rabbi, priest, or chaplain.
Every family is unique and while some may benefit from the services of trained professionals such as a case manager or social worker, it is not essential. The most important consideration is to be as inclusive as possible and not overlook current or potential resources to help your family.
Again, be as inclusive as possible with your agenda. Everyone will have wildly divergent ideas of what is important and just recognizing that one fact will be useful in itself. Be sure to give the main character-your loved one needing care-a starring role.
For example, when you ask your mom, “What are your biggest problems you’re having right now?” you may expect her to say “My failing health.” Instead, she is more likely to say “You are all trying to get me to move-that’s my biggest problem!” You might consider rephrasing the agenda item to say, “Pros and cons of mom moving.” This might lead to a discussion of “why we want you to move.” Be frank-“We are afraid you’ll fall and not be able to get up.” This might lead to a discussion of all the possible solutions, including personal alert systems, cell phones, a daily phone call or visitor, as well as the benefits and potential drawbacks of an actual move.
Review the elder care planning agenda in advance with all concerned. Use email, phone, mail, or whatever is convenient for your group. Don’t forget to set a date for the next meeting. It could be in a week or a year-but setting a time to reconvene is useful.
After your agenda is complete, be sure to assign a neutral person to the role of facilitator. Another person might be designated to be the note taker and yet another to be the time keeper, both to limit the length of time of the meeting as well as to try to make sure that people share “air time,” that is, no one gets to speak more frequently or longer than another.
Arrange a comfortable physical environment with food and beverages and comfortable seating where everyone can make eye contact.
An enormous obstacle to a successful family meeting is family history, especially family conflicts. Even the most harmonious family has had huge fights in the past, and multiple slights, insults, and injuries-and most families arenot harmonious. Mothers and daughters, sons and fathers, brothers and sisters are traditionally at odds with each other. Now add in-laws, aunts, and a grandparent and you have a recipe for a messy stew. Keep in mind this is normal family dynamics. But this meeting is not about the past,it is about the future. Say so.
Disparate viewpoints will emerge at this meeting. Assure everyone that there is no perfect answer and no solution will please everyone. Compromise, compromise, compromise.
Recognize that safety may not trump all other variables in elder care planning. Most individuals desire a good quality of life, which may trump quantity of life. For example, some older people prefer the safety of living where they need not use stairs; others find the risk (and healthy exercise) of stairs, especially in a beloved and familiar environment, worth the risk of a fall.
Distribute the notes to all concerned, even people who could not attend but wanted to be there. Honor and follow up on what was decided at the meeting. Be flexible in case the situation changes. Your loved one may be fine at home now with the new support systems set in place as a result of the meeting, but even without saying so, families usually recognize that the situation will most likely change and probably not for the better.
Elder care planning experts suggest having a list of potential fall-back positions, for example three retirement communities where mom might consider moving. Plan a visit with mom to each and consider advising her to put her name on the waiting lists. It doesn’t mean she must move when her name comes up. It is a “Plan B” in case the situation changes.
Whatever the outcome of the family meeting, try to remember that it may not solve every problem. Sometimes just being able to mitigate some dilemmas and clear the air is a step in the right direction.
Many families engage a social worker or case manager to be part of the team. Where do you find such a person? One web site is the Eldercare Locator at http://www.eldercare.gov; 1-800-677-1116.
This is part of the National Family Caregiver Support Program (http://www.aoa.gov/AoA_programs/HCLTC/Caregiver/index.aspx) and they may be able to refer you to free social workers or case managers in your area. Often your county Area Agency on Aging (http://www.n4a.org/) will have specially trained staff that may be available to consult with your family at no charge.
Update: January 2018