As a group leader, how much should I accommodate?
Hello everyone. I animate a social group at my church, we meet every Thursday and do something different every week. sometimes we stay at church and play games, art hive, etc. sometimes we go out to a museum, once a month we go bowling. Note that I am a volunteer with a background in computer science. I want to offer a variety of activities to appeal to a variety of people, something that I would sign up for if I saw the listing. And lunch is always included.
While the group is open to all ages, the attendance is primarily seniors, because that is who is around and available in the daytime. One regular (G) is going down the dementia road big time. Every week, G comes with his cousin (they live together) and he says no one told him what we are doing and he gets frustrated and wants to leave immediately. His brother D (who also lives with them and happens to be an ex-bf) gets upset with me when I plan an activity that G isn't able to do. the schedule is announced a month in advance, with reminders closer to the day. and there are 3 on the planning committee including me and the minister.
Last week was cribbage. I was asked on the Sunday before, "What is the alternate activity? because G can't do that." Um there isn't. I asked G if he knew how to play, he said no, and I said, "No problem, we'll teach you." On the day, he didn't want to play or learn (ok fine) and his cousin brought this baby puzzle that he was not interested in. He would rather wander around the church and swept up a bunch of dead leaves in the side entrance.
This week we are watching a Christian movie in-house, and also honoring the memory of someone who died 3 years ago. From past experience, G can't follow a movie plot anymore. D lit into me saying that I should only be planning activities that people with Alzheimer's can do. I offered D to join the planning committee for November and he refused.(For November so far I have: fall prevention seminar that was rescheduled from June; inter-generational painting that was rescheduled from October; bowling; and one blank that I was trying to get a retired minister to come and speak about his solo cycling trip across the USA.)
For me, G is the brother I never had. And even though he is quiet and doesn't want to participate much, I interact with him and talk to him like an adult. IMHO the old G is still in there: the silly joker, the voracious reader, the man of deep faith. I won't yell at him like the rest of his family does.
My qn is: How much is reasonable accommodation for G and anyone else similarly affected? How much should I water down the programming for the lowest common denominator? There are only so many times I can play beanbag toss.
Today was Thursday so I was thinking about your group. Hope it all went well.
This week we had a movie in-house, "Faith's Song", plus to discuss and remember the death of a cherished friend exactly 3 years ago. We had only 5 people including myself. G stayed home while his cousin came, and G was supervised by cousin's daughter's boyfriend's brother, (who is in his 20s and not working). The official story is that a movie that includes a death or violence can be triggering to those with Alzheimer's -- there is a fatal car accident in the movie.
After the movie, the planning committee decided to convene and discuss November, and surprisingly December -- didn't expect to discuss that far ahead. We did also talk about the famous family -- the minister and the 3rd member of planning had spoken to D the previous evening at choir practice. D is now asking for the schedule even in advance of when everyone else receives it. (yet when i do send him any documentation, draft or final, he sounds off to me) And G cannot be left unsupervised for even5 seconds -- letting him sweep the dead leaves, even though he was a school caretaker back in the day and sweeping leaves made him feel helpful and happy, that was considered unacceptable.
(I forget if I mentioned there was another time when G went out of the room and into the hallway. We all assumed he was going to the bathroom. Two people were changing neon lights in the hallway and one brought G back in -- allegedly G was trying to sneak out. The next Sunday, of course D screamed at me, told me G must only use the bathroom next to our meeting room, and threatened that his sister (who live in another province and he's on the outs with) was going to sue the church if something happens to G during the group meeting.)
I made it clear in the planning meeting that I am not running an adult daycare and I am not putting on alternate activities if someone does not like or cannot do whatever the plan of the day is. I did tell the minister if there is a need at church for an adult daycare, someone more qualified than me should run it, and keep my group as it was originally conceived 3.5 years ago. I can't be constantly supervising anyone when I have a group to lead and support.
it seems the minister wants to run as go-between between D and me. He was not aware of how far back D's and my families go -- a good 40 years, through Scouts and Guides. I don't expect to ever be D's gf again, but whatever is going on in D's world, I can't deal with the treatment I am getting.
I actually think its time to place G. He needs more care than D can provide since he works. And...D expects others to fill in the gaps. You seem to keep your group simple. You pick the activities and have a plain simple lunch. People don't come if the topic is not to their liking , same with food. Your group is not set up for someone suffering from Dementia. And IMO, its not up to you to provide activities for G.
Talk to your Minister and have him talk to D. IMO to have activities for G, you would need someone to volunteer their time to watch G. That person would need the patience of a Saint. Really, having him there is not fair to the rest of the group. Its really a sad situation.
The OP needs to work with a deacon to decide what the mission/purpose of the group is, who it is for and then stick to this as the filter for all input and problems. This is the only way to sanely and successfully run a ministry. All other strategies will end in the dissolution of the group due to the unhappy regulars, or burnout by the group leadership. Been there, done that for the past 25 years in our church.
What they are asking of you is that of a professional dementia specialist, which you are not and you are not qualified to handle. That is simply a fact.
You don’t run a group home or a dementia daycare, which is what they need. You don’t have trained, qualified help to deal with this man’s medical condition. Just like you also aren’t qualified to say insert catheters on those who need or change diapers, etc.
You aren’t a medical provider and you also don’t carry liability insurance should something happen to this man while he is in your group.
What great work!
I would take this question directly to those you are working with and helping. I would schedule right away a meeting with "let's talk about what we want to do".
You are never going to find things that EVERYONE wants to do or is even capable of doing; there might be sub groups and sub leaders so that some can do the bean bag toss and some can play cards. Just saying--some seniors love to go gambling on a tour bus; others think it's the devil's work.
Whatever you do, you are affording people a place to gather with one another. Whatever problems there are, the attempt is wonderful. I so admire you for it.
You might consider also going to one of those good Assisted Living Facilities. My brother's always had activities and ranged as wide as all sort of art projects to bingo. Talk with their social worker.
Again, KUDOS to you.
If not you might suggest to him/her that they come a few times.
Then I think it might be time for the minister to sit down with the family and discuss alternate programs for "G".
An Adult Day Program might be a good option. If there is one in the area that can be suggested, if not maybe if there is a need in the community it might be something that your church could consider starting. (Yes I know there are a lot of hoops to go through but it would be a great addition to the church and community)
But you would do a disservice to the rest of the group accommodating one person. I thin you would find eventually people will stop attending.
Example: We are playing Rummikub. G will sit there with his tiles but after 3 or 4 tries at forming a play, he will stare into space and lose all interest. The minister will team up with him and "help" him play his tiles.
G will also have some kind of conversation with the minister, whether at the table with all of us, or pulled off to the side in semi-private.
Ex GF, Sis to G, planning committee and Animator are all intermingled here. Start with the basics.
Speak with your planning group and ask that one of them call D to help him understand the decision of the group as it relates to Alzheimer’s activities. It might be that your church is looking into what you may be able to offer in the future or you may come up with a perfect answer for now but let someone else be the interface.
I might also encourage him to check out an Alzheimer’s support group if I were the one planning to meet with him. Maybe over lunch on an alternate day. or you might want to incorporate a speaker from the Alz group for one Thursday. I don’t know the size of your group or nearby resources but having professionals speak to subjects that are very relevant to today, no matter what your age, can be helpful. I know my elder law attorney firm speaks to groups. Even a polished social worker might make a good guest. There is a social worker position called “Community Educator”. I have spoken to one a few times and they seem to have an endless contact list. My cousin took her mom to every Parkinson’s meeting she could find. She found them very helpful.
Consider also that D may be burned out and really needs support of some description. Would he be coming to these events if he didn’t have G in tow? Perhaps he’s bringing him with your encouragement. Remember that dementia progresses and G’s decline may be very slow or big changes may occur overnight. His being part of your group may have helped others in many ways they may not be aware of. So it’s a rough road and one I’m sure you may choose to walk with him on beyond the group, family or not.
My cousin use to take her parents everyday M-F for years to their senior center for lunch. I took them one time for her when she had an appointment and needed a quick sitter.
They had many activities at this center and it was well run etc. But as they both had dementia, they didn’t stay long. Cousin took them for lunch and then back home for naps etc. That was enough. They got dressed each morning with the idea that they were going out for lunch where they made friends and had a social outing plus a meal.
Would it be possible for D to bring G for lunch and skip the other portions when it is an event not suited for G? Would there be even more members who would come if they had a “sitter” or alternate class for their loved ones with dementia? That may not be something your church is prepared to offer now but it would be a real help to some caregivers.
Nursing homes and ALF put out monthly calendars for activities.
You might visit their websites or introduce yourself to the activities director at some in your area. They might have some pointers for how they manage the many different levels of dementia in their groups.
Look up 5min yoga laughter on YouTube. It’s sure to lift the moods for those in your group who need encouragement.
If you aren’t already familiar with it, you could probably watch it a few times and not even need the video to show your group if you think it’s appropriate. I went to a laugh seminar in a church years ago and it was great.
This is the 5 minute one. Celeste Green is a certified yoga laughter instructor and has several videos.
https://www.youtube.com/watch?v=hrMMWAEtaVM
You should not water down the activities at all. If everyone else is enjoying themselves, keep doing what you're doing.
'G' should be going to a senior center or a therapeutic recreation group for seniors with dementia. You can always go and hang out with him privately at his home if you want to stay in his life.
He doesn't belong in your church group anymore. It's probably very stressful for him because he doesn'y know what's going on, and it's very stressful (and probably embarrassing) for everyone else in the group.
His family is really being selfish, expecting you - and everyone else in this program - to cater to this man with dementia.
If you start to make major accommodations now, how much more are they going to expect from you as this disease progresses?
Let me ask you this - if this were a program for children on a certain age group, and someone insisted on bringing along a toddler, who clearly wasn't able to do what the other kids were doing, would you "dumb down" the entire program to accommodate this person? Whose ***family*** should really know better and be able to understand that the program isn't appropriate for this individual?
Add into the mix that you are a volunteer trying to run a program for a group of people, and my opinion is that they are being very self-centered in this.
I do like that you called out D and asked him to join the planning committee. That he refused shows me he is less interested in figuring out a solution and more interested in making someone else responsible for entertaining his brother.
If I were you, I would keep planning as you have been and let the complaints fall on deaf ears. If they don't like the activities, they can make the decision to not come anymore or only come to those to which G can participate.
In any other organization, yes I agree: if you don't like what's on the agenda for a certain week, you just don't go. However if I tell someone at church that, they will take it to mean I am excluding them from church. Which goes against the whole philosophy of "all are welcome in this place".
"Oh, but that's not abuse, they are fine Christian people….."
Yelling is abuse, and if they are doing that in public, much worse could be going on in private. Please put the possibility on your radar screen, and contact the proper authorities if necessary. Read up on this:
https://www.apa.org/topics/aging-older-adults/elder-abuse
It's real and goes on more than we suspect.
My advice to you is to have a meeting with a deacon and develop a protocol for people like G. G's cognitive problem will eventually commandeer the rest of the group and those other attenders will stop coming -- OR members who have parents with cognitive issues will start treating your group like an Adult Day Care, and this will be a strategic and liability problem for your well-meaning church.
My long-time friend attended our bi-weekly small group in our home (part of our church outreach). She was a Lutheran Pastor by training, and had developed a very successful non-profit ministry. I've know her for over a decade and was a board member on her non-profit.
First, she showed signs of memory decline over the course of a few years. Then it seemed to ramp up quickly and she lost her driver's license, so we took turns transporting her to and fro. Then as her cognitive impairment rapidly advanced, to include memory looping and paranoia, we had to make the painful decision to no longer have her attend our group because she took all the energy and healthy vibe out of our fun small group.
I contacted her PoA (her sons) and kept them informed of her behaviors. That's what you should be doing with G's family -- primarily because if G is driving, this is a big problem. Or, you decide you're always going to plan a separate activity for him, because if he's the lowest common denominator in the group, others will rightfully perceive this group is no longer for them.
We have an aging world, so from now on there won't be any lack of seniors to attend groups. You should have a plan and protocol, and also a helper if at all possible.
If you want, feel free to PM me and we can have more of a conversation about this if you wish.
Blessings!
100% agree with this!
This is not your problem to solve.