Make the best senior care decision

For families, elder care is often one of those difficult topics. Bringing the family and support network together for a meeting to discuss a loved one’s changing situation and available options is a crucial step in elder care planning.

There are various barriers, both real and imagined, to holding a family meeting about senior care. Geography is a big one: Often families are widely dispersed across the country. Lives are already busy and overscheduled before adding yet another commitment. Paid caregivers might not want to donate their time to ponder the issues, and families may feel it’s too expensive to pay caregivers for meeting time.

Now we have Zoom and other video conferencing technology. This improves opportunities to involve everyone. It’s still advantageous to gather those who can attend in person. But add some devices and include the major participants as well as a moderator.

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.

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’s also typical for one sibling or caregiver to feel that they’re doing more than their fair share individually, and that someone else isn’t doing enough.

Often these roles are influenced by culture, gender, and birth order. For example, an adult son may be quite willing to mow his mom’s lawn but 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 meeting for everyone involved almost always will improve the situation — as long as the meeting is well planned, well attended, and conducted appropriately.

So why meet to plan for your loved one’s care? This plan is a road map for you (and other important people in your aging parent’s life) to follow that is based on their wishes. Having a well laid out plan will help you make the best choices on behalf of your parent if they are unable to make their own decisions, as well as ensuring everyone in your family is on the same page, which can relieve unnecessary stress in an already difficult time.

Let our care assessment guide you

Invite at least three or four people who will definitely attend, with a maximum of about 10 people. Of course, your elderly loved one who needs care is the most important attendee, even if that means holding the meeting in a hospital room.

While these obstacles shouldn’t stop you from having a meeting and including your elderly family member, some special challenges for holding a meeting include:

• Hearing loss
• Symptoms of Alzheimer’s or other types of dementia
• Reluctance to acknowledge or discuss problems

Some families may consider it inappropriate to include the loved one concerned, perhaps because the person’s disabilities make it difficult to discuss the situation in front of them. In addition, American culture has a tendency to leave out older people, just as you might exclude a child from financial discussions. Cultural or traditional taboos — such as discussing death in front of the dying person — may prevent some families from including their parent.

Whether in person or in Zoom, it’s now considered standard practice to respect the choices, dignity, and autonomy of frail elders, regardless of age or cognitive state, by including the individual in any decision-making process.

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 person shouldn’t be there.

You could also consider inviting:

• Direct professional caregivers
  Although they’re sometimes overlooked or excluded, caregivers may know the most about relevant issues, such as incontinence, which the family is totally unaware of.
• Neighbors, old friends, and all available family members
  For geographically widespread friends and family, consider setting a date near a holiday or birthday and planning months ahead to give everyone time to buy plane tickets. Or set up a video conference.
• Spiritual advisors
  Depending on your family’s beliefs, it can be helpful to include a religious advisor such as a rabbi, priest, or chaplain.
• Social workers or case managers
  Every family is unique, and while some may benefit from the services of these trained professionals, it’s 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’s important, and just recognizing that one fact will be useful in itself.

Make sure to give the main character — your loved one needing care — a leading role. For example, when you ask your mom what the biggest problems she’s currently facing are, you may expect her to reply, “My failing health.” Instead, she’s 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 be called “pros and cons of Mom moving.” This might lead to a discussion of “why we want you to move.” Be frank: “We’re 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.

Talk with a Senior Living Advisor

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 the role of facilitator. Another person might be designated to be the notetaker, and yet another to be the timekeeper, who both limits the duration of the meeting and tries to make sure everyone shares air time — that is, no single person gets to speak more frequently or longer than anyone else.

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 may have had huge fights in the past which include multiple slights, insults, and injuries — and most families aren’t harmonious to begin with.

Here are some communication considerations:

• Complicated family dynamics
  Mothers and daughters, sons and fathers, brothers and sisters: all 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 these are normal family dynamics. But this meeting is not about the past — it’s about the future. Say so.
• Working together
  Disparate viewpoints will emerge at this meeting. Assure everyone that there’s no perfect answer and that no solution will please everyone. Compromise, compromise, compromise.
• Nuanced solutions
  Recognize that safety may not outweigh all other variables in elder care planning. Most individuals desire a good quality of life, which may be more important than quantity of life. For example, some older people prefer the safety of living where they don’t have to use stairs; others find the risk — and healthy exercise — of climbing stairs worth the risk of a fall, especially in a beloved and familiar environment.

Distribute the meeting notes to all concerned, even people who couldn’t 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 fallback positions, such as three retirement communities where your parent might consider moving. Plan a virtual or in-person visit with your parent to each community, and consider adding their name to the waiting lists. This doesn’t mean they must move when their name comes up. It’s just 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 discuss 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? Here are some options:

• Try the Eldercare Locator from the Administration for Community Living, which can also be reached at (800) 677-1116
• The National Family Caregiver Support Program may be able to refer you to free social workers or case managers in your area
• Your local Area Agency on Aging has specially trained staff that may be available to consult with your family at no charge