Caregiver Teleconnection calls are archived within a week of the original presentation. In about a week, you can find the archived audio recording of this teleconference at:
caregiversos.org/caregiver-teleconnection/first-steps-in-caregiving/
(You may need to scroll down a bit to find the list of archived recordings.)
Today’s conference call covered these topics:
– What is a family meeting?
– When should a family meeting be held?
– Why do we need a family meeting?
– Identify the purpose of the meeting.
– How to address the issue of a resistant elder.
– Who needs to attend a family meeting?
– Things to consider when inviting people to a family meeting.
– Where to have a family meeting.
– Tips for a successful family meeting.
– A Case Study
– Resources
There are four family meeting-related resources mentioned by the speaker:
1- Book titled “The Caregiver’s Path to Compassionate Decision Making,” by Viki Kind, 2010
2- MN Board of Aging webpage of family meetings at
mnaging.org/en/Advocate/~/media/MNAging/Docs/Advisor/caregiver/CW-HoldingFamilyMtg.ashx
3- Family Caregiver Alliance webpage on family meetings at
caregiver.org/holding-family-meeting
4- AgingCare.com webpage on family meetings at
www.agingcare.com/Articles/holding-family-meetings-foraging-parents-142664.htm
Brain Support Network volunteer Denise Dagan listened in on this morning’s call and shared these notes.
Robin
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Notes by Denise Dagan, Brain Support Network Volunteer
Family Meetings: Effective Planning for Aging – Even when a Loved One Resists
Speaker: Kim Olmedo, LCSW, social worker
Caregiver Teleconnection (conference call), by Caregiver SOS
February 12, 2018
What is a family meeting?
Any formal, structured meeting of family members that may also include professionals and/or clergy to communicate about an older adult’s care due to declining health or difficulty functioning.
You can have a family meeting to discuss:
– What kind of care do they want at the end of their life?
– What arrangements must be made to care for their increasing medical needs?
– What arrangements must be made due to their declining cognitive functioning?
– Where shall they live after a medical crisis?
When should you have a family meeting?
– When there are unresolved issues, like the family doesn’t know what kind of advance care planning is already in place.
– When there are new problems, like the elder is no longer able to live alone.
– When safety is an issue, like driving, home safety (stairs, gas burners, etc.), inability to prepare meals or shop, etc.
What is decided during a family meeting?
* Resolve issues, like who will be the primary caregiver? Who is the back up caregiver when the primary caregiver is ill, working, or on vacation?
* Identify goals, like the timeline for moving into assisted living. What is the preferred outcome? Is there a set outcome, or is a final decision something that can be negotiated? Identify goals for rehabilitation or long-term care.
* What does the family want to accomplish? What type of care facility is appropriate for their care? Where should that facility be located? Nearer to children or in the same community where they have been living. What are the needs and issues of the care recipient?
Identify the purpose of the meeting:
* Sometimes, the purpose is simply to clarify things, such as an advance care planning meeting, where the issue is determining who the decision maker will be, learning the person’s wishes for end of life care, and completing advance directives.
* Other times there may be a specific purpose or issue, such as lack of safety in the home and what choices there may be to mitigate the safety issues, like private duty home care, moving the elder to a child’s home or into assisted living.
* Have an agenda to keep the meeting on track and moving forward.
* Sometimes, you need to break the decision-making process into a few meetings because it would take too long and be too overwhelming to do all at once. Sometimes, during the first meeting you find information is missing and it is wisest to break and gather the missing information, then reconvene to discuss how to move forward.
How to address elders resistant to making changes:
* How resistant is the elder?
* Giving them choices helps them to accept change and adjust well. However, only present truly available options (that are feasible and which they can afford). They may not be ideal options the elder prefers, but by having a choice the elder feels a certain amount of control.
* If there aren’t choices available, how can the news be presented in the best possible light? See the Case Study for an example. See “The Caregiver’s Path to Compassionate Decision Making,” Viki Kind. In this book, the author explains how her father could not make decisions, but could have some choice in the big picture. She researched care facilities and took him to her top two options and let him decide that. Sometimes, presenting the facts of the situation helps an elder person be able to see that change is necessary. Treating them as an adult with some choices is helpful to getting their buy-in.
Who should attend a family meeting?
* The care recipient? Sometimes, No. If they have dementia or critically ill, they are unable to participate.
* Close family – children and spouse. Even distant children via Skype.
* Extended family. Sometimes siblings, nieces, nephews, etc. are very involved. Don’t leave them out.
* Neighbors and chose friends
* Professionals. They can be the bad guy, deflecting blame from adult children who must be the hands-on caregiver and suffer wrath.
* A Geriatric Care Manager or Social Worker, if involved. They can be an objective voice and present disappointing news to the elder person. If family members present disappointing news, the elder may resent them and be uncooperative toward them. It is best if a professional or clergy presents disappointing news to elders, especially if they have dementia.
* A long-time friend or clergy member as an ally to the elder person, so they don’t feel “ganged up on” or betrayed by the family & professionals. Before you choose this person, be sure they will both support the elder as well as the family’s goals, so he/she doesn’t undercut the family’s efforts.
Where do you meet?
* At the elder’s home. This can be the safest, most convenient place, but if you are discussing moving them from this home it can reinforce resistance to moving away.
* At a family member’s home, although this may not feel safe to the elder. They may feel “ganged up on” or attacked by the home owner and family.
* At a neutral location; doctor’s office, hospital, lawyer’s office, church, a friend’s house, etc. can minimize extreme responses to the suggestion of a move.
Tips for a successful family meeting:
* Listen to all parties respectfully.
* Treat the elder as an adult and speak directly to him/her.
* Stay focused, don’t bring up family history, etc. that is distracting from the purpose of the meeting.
Case Study:
Lenora (late 70s widow) living at home with mild dementia & in-home caregiver whom she didn’t like. Didn’t want a caregiver. Move to assisted living was nearing. Daughter, Emily, lived out of state and going through divorce. These two had a difficult relationship and usually argued when talking. Daughter asked Kim to mediate their phone calls. Emily was increasingly worried about Lenora’s home safety. Kim visited Lenora weekly and Lenora frequently commented on Emily’s wellbeing. Emily and Kim had more frequent conversations about what to do next for Lenora. Kim met Viki Kind (book author) and asked how to proceed to speak with Lenora about assisted living. Viki’s input helped Kim realize that Lenora’s worry over Emily could help her transition to assisted living. Kim acknowledged Lenora’s concern over Emily’s wellbeing and, together, Kim and Emily suggested Lenore move to assisted living as something Lenora could do for Emily to ease Emily’s worry over Lenora during her divorce and with all she had to do daily for her kids and full-time job. Moving to assisted living in this case was cheaper than in-home care. Lenora didn’t want to move, but felt she was doing something to help her daughter, so agreed and adjusted to assisted living. Of course, she missed her home, which Kim and Emily validated, but they continued to thank her for making this adjustment for Emily.
Resources:
• Kind, Viki. The Caregiver’s Path to Compassionate Decision Making: Making Decisions for Those Who Can’t. TX: Greenleaf Book Group Press, 2010.
• http://www.mnaging.org/en/Advocate/~/media/MNAging/Docs/
Advisor/caregiver/CW-HoldingFamilyMtg.ashx
• https://www.caregiver.org/holding-family-meeting
• https://www.agingcare.com/Articles/holding-family-meetings-foraging–
parents-142664.htm
Question & Answer:
Q. Support group leader now finds her own mother has dementia. Mother lives independently, drives and has big house with several pets. She has announced over the years she will never leave her home. Is there anything besides in-home care? Live-in caregivers? Daughter lives 3000 miles away.
A. Most of Kim’s experience with live-in care has not been successful. There are some situations where it can work, especially if you can find someone younger who is more of a companion than caregiver or a grandchild who would benefit from having a free or cheap home in return for caregiving. You may start with someone coming in to help with the animals to get her used to having someone coming in. Once she realized how much help that is, that person (or someone else) may be able to come in and drive for her, or help with other things.
A. Contact your local animal rescue services. They may be able to provide an animal care volunteer or find adopted homes for some of the animals.
Q. How have you found people manage when they have promised their family they would not put them in a nursing home?
A. It’s not always realistic because of dementia or safety. It may be physical reasons, like stairs. Because women work so much more than prior generations, it is unrealistic to promise you will not be placed in a care facility. Sometimes, a doctor can present reasons why they can’t stay in their home. Care facilities are SO much better than they used to be, taking them to a few can make the option better than they imagined.
Q. In Florida, the PACE Program provides in-home support (some dementia, depending on degree). This can be a gap-filler before Medicare kicks in.
A. Every state is different. Area Agencies on Aging (AAA) can provide vouchers to cover some in-home care, but it will be minimal. Your State’s AAA will know all the resources in your area. Other resources: Elder Care Locator: 1-800-877-8116, eldercare.acl.gov. You can search by city and need (legal assistance, home modification, etc.). Aging and Disabled Resource Center (ADRC) for your state/county may also be helpful.
A. Sadly, demand is expanding, but resources are not. Assisted living centers are expanding, but they are prohibitively expensive for many families. There are very few federal dollars for long term care. Mostly, long term care needs are covered by non-profits.
Q. In a family meeting, how do you balance the conversation when one or more participants are dominating the conversation?
A. It doesn’t happen very often, but sometimes there is one participant who defers to another, which can complicate the dynamics of the meeting. Having an outside, objective participant helps with this. Having an agenda helps. Set an end time for the meeting helps.
Q. My husband’s sons are not capable of care taking and they all have crazy work hours, so I am the conduit to coordinate communication. I give them each information about advanced directive, etc. It’s challenging. It may not be feasible to have everyone in the same meeting.
A. Use email, closed Facebook group to communicate with everyone simultaneously. That way everyone received the same information.
Q. My parents want to stay at home and die at home. Dad has COPD and Mom has dementia. It is more expensive than a facility. Family fear is that we are too late for Mom to move her to assisted living because she needs more care. Do you get to the point where you have to make the choice for them?
A. Sometimes they are not able to make that decision. Viki Kind talks about different kinds of decision making (sliding scale). Their ability to make decisions depends on their level of dementia. She had to make that decision for her Dad, but he could decide which one he felt most comfortable with, even which room he would have. Getting all five of their children on the same page is another issue.
Q. How is Viki’s sliding scale set up?
A. If a person has no capacity that is one end of the scale and makes no decisions. In some assisted living facilities staff puts out two outfits so they make a choice without being overwhelmed. Depending on their level of dementia, you would limit their options. They would not participate in medical decisions because they can no longer comprehend the options and potential outcomes, but can say who their medical power of attorney will be.
Q. What happens for people who have zero resources?
A. The family would ideally have an assessment from a geriatric care manager, but it costs several hundred dollars. Beyond that you are looking at services from the Alzheimer’s Association or other organizations. Often an elder winds up in the hospital and the social work staff will get involved and help the family find options for the elder’s future care. Some churches have ministries for older adults so look outside the proverbial box.
Q. How does somebody find a geriatric care manager. Even though it costs a few hundred dollars it is well worth it, especially if your family dynamics are challenging.
A. aginglifecare.org – Professionals with training and experience on doing aging assessment. You may be able to access them through your hospital’s social work office, if your elder is already hospitalized it is worth asking.