I am the manager of a 20 bedded EMI unit caring for people in the mid to late stages of dementia. I would like to start a support group for relatives and would appreciate any thoughts on what sort of information or advice I could pass on to them.
Four months later and I'm still beating myself up everyday. .
I think Alfjess has made a good point and this is something you’ve got to be careful of.
Whilst there will be some who would benefit from this group, others may find it unhelpful, disappointing and even quite patronising. Many relatives are incredibly knowledgeable in this area and for most; there won’t be all that much which they don’t already know or which they can’t access themselves.
I’d aim for something which doesn’t have an agenda, a regular / planned activity etc, but simply offers the chance to chat and catch up with each other – as with this forum.
What are your current arrangements for supporting friends and relatives?
Knowing what some of the meetings at my Mum's home are like,what a brave lady you are!
A support group is a good idea, but be prepared for people not to get involved, this is my experience at Mum's home. I would say keep it to maybe a coffee morning or afternoon tea, fairly informal, where people can chat to managers/admin/nursing/care staff. Something to encourage relatives to consider the home as their home too, I know this made a vast difference to me.Make information available to relatives but don't 'push it at them. Many will probably be as well or better informed than yourself (no offence intended), others will not want to know the extent of what dementia can do to a person, always remember that carers/relatives are trying to hang on to THEIR sanity too. If you have YTT dementia training for staff( and in my eyes this should be a must for all EMI homes)invite relatives along to that if you can. My Mum's home did this and it was a great success. Above all I would say cultivate an atmosphere of being open and available. Sorry not trying to 'teach grannie to suck eggs', just saying what's important in my opinion. Good luck with your group support.
There was never a support group at my father's home, but if there had been one, I would have welcomed it with open arms, but as some here have already intimated, probably the best support a family member of a sufferer can receive is to be reassured that their loved one's wellbeing is the number one priority of the home. My wishlist for a support group would be that it focused on ways to improve the current care. I would also think it would be fantastic if as part of a support group' activities it could allow family members to act as guest speakers if they wanted to, where they could present to the staff who cared for their loved one and the other family members a history of who their loved one is/was. Picture this, a family member bringing in photos, trophies, awards, newspaper articles and describing why it is so important that this person be valued, making that person real to everyone else. Describing to them how much 'Tom' liked sweet tea (it was always a struggle to get the staff to remember to put sugar in Dad's tea), describing how he was once a chess champion, how he loved his kids so much that he'd do anything to protect them, how delightful it was to make this very serioud man laugh. How hard he worked, how he was a respected manager at his company and how people now still say how good he was and wish that he was still there. Describe to them how we had to learn how to cope with his dementia, how we had to bathe him and toilet him etc (the home staff where Dad was, always treated us as if we had no idea how to do such things). And then I would also have liked a support group so that I would have a less emotional forum at which I could have addressed all the little issues, that one at a time seemed petty but altogether added up to cause great distress. Such as, Dad's bedspread (the only thing that personalised his room) being constantly removed as it was too much trouble to wash, Dad being dressed in other people's clothes that didn't fit him, me finding Dad in the mornings with his pyjama shirt put on backwards so that it acted somewhat like a straight jacket and me being told that it was just too hard to put it on the right way, Dad having food left to dry and cake around his mouth after meals, Dad being left in wet pants for hours on end, the apparent lack of staffing that always would occur in the main area in the evenings when carers were busy showering and putting to bed individual inmates, when the rest were left alone unsupervised and often distraught, or unprotected from other inmates. There were so many of these little things, but when all I could do was talk to the staff that were on at that minute, staff who had no authorisation to make changes, who seemed to feel that any thing I pointed out to them was a personal attack...I was often left feeling frustrated and powerless, wondering if any complaints I made did more harm than good. If I had a forum I could have talked at, I would have been able to make it clear that I wanted to help, if they wanted me to come in and feed Dad every day I would, if they wanted me to help shower and toilet him I would, if they wanted me to schedule my visits so that I could spend an hour with him walking and having coffees and then staff could involve him in home activities at other times that would have been fantastic. I would have been happy to take the load off staff with regards to care in exchange for guarantees that that time they save there would be used later in my absence for them to take more time with him (i.e. put his shirt on the right way!). So in summary, my personal wish list for a support group would be:
Wish list
1. Give the people involved a chance to ensure staff knew the person they were caring for;
2. Give the people involved an opportunity to make staff realise that they knew an awful lot about caring and how the disease affects a person and that they can be used as a resource when the staff are having troubles knowing how to deal with a behaviour (i.e. we knew to put something in Dad's hands when he was taken to the bathroom as this stopped him grabbing hold of you and leaving bruises, we knew that if you told Dad to sit down or take a step up, it would take approximately 2minutes for that to get through to him, but that he could do it, if you waited);
3. Give the support group members an opportunity to tell of things that they were not happy about regarding the current care...make this a positive thing by trying to get people to also suggest possible solutions, make it an agenda item for next week's meeting to see if the problem had been fixed and if not discuss reasons why the problem hadn't been able to be remedied. If short staffing and lack of funding is making the problems unfixable, discuss with the group if fundraising might be an answer or rallying up volunteer helpers, or perhaps support group members helping each other. I would often spend a bit of time saying hello and chatting to various other inmates, helping them out if they seemed distressed where Dad lived and I hoped that other visitors would do the same for my Dad. A support group could make this a more overt practice, especially if members had heard the stories of who the various inmates were, so that they could relate even better to the person.
4. If support group members wanted to or had the time, perhaps organise weekly events that they could participate in with the sufferers, i.e. a trip to the zoo, a church singing group coming to perform, a childrens day (where kids in the families could come and have fun playing games and doing activities at the home and also see their grandparents, so that the sufferers could enjoy watching them all play but be able to escape away from all the noise if it was too much for them), fete day with stalls selling arts and crafts, a movie afternoon, if family members signed up to attend such things, the greater number of helpers on board would make such activities more doable and manageable.
Am I dreaming, when I suggest all this I wonder?