Relative support groups in the Care Home environment

lady racer

Registered User
Mar 12, 2007
15
0
northwest england
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.
 

Charlyparly

Registered User
Nov 26, 2006
217
0
Lancashire
As Grannie G said – ask them what they’d like to know.

Encourage and be open to honesty (of which some may be brutal!) and do what you can.

:)
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi

For the first group, it could be just be a place where they voice their concerns and worries and from that you could maybe build an education programme for relatives of dementia sufferers

There are various handbooks and leaflets readly available, I'm sure you know this, but maybe some relatives have never seen them?

I went to the relatives support group in Mum and Dad's care home.
It wasn't for me. They were making greetings cards with the activities co-ordinator.

Some relatives (all female) were quite happy, but sorry, I felt I was there to learn something about dememtia.

Maybe a happy medium between the two would do it. I mean very informal.

When I told the CPN I had been to the relatives support group, she said, "J------ you have been there, you could give talks to the group.
I think you can have a speaker from the Alzheimers Society come along.

Sorry if you know all this already. I think support groups are important

Alfjess
 

Charlyparly

Registered User
Nov 26, 2006
217
0
Lancashire
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?
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Listening to the Carer, as they are the ones who know their loved ones best.
Always answer question honestly.
Showing respect to who is being spoken too because they have a great deal of experience and knowledge of what they have had to learn the hard way.
Compassion to the patient and the Carer.
Treating each case as individuals.

Christine
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
There is a relative's group at my Jan's home.

For a variety of reasons, I've not attended in 7 years that Jan has been there - mostly, I think because I drive 50 miles and 50 miles back for each visit, so I want to maximise my time with my wife.

To spend an hour at a relative's group would mean an hour away from Jan on a visit...

However, that is not to say they are not useful and sensible things to aspire to, and excellent things to wish to try.

For my part, I'd say focus on the resident, not the relative.

That sounds weird, but for me, the knowledge that Jan's home is doing its utmost for her, is the key thing. So, talk around how things can be made better for the resident, and more acceptable to the relative.

I would, of course, mention Talking Point, but how that would be done would depend on the ages and backgrounds of the relatives.

It might be a good starting point because so much ground is covered here.

I have just offered to give a talk on our experience of dementia, plus TP, as part of staff training at Jan's home. The manager leapt on my offer and wants me to do 4 sessions in August. I already do this for AS Induction courses so I have material to hand.

I may offer to do it for the relative's group there... hadn't thought of that.

So, if there is a relative at your home who may be able to talk, then other relatives may warm to that.

Cast your net wide in the way you mould a group. What works in one place may not in another.

As in everything, make it personal.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
I'd say, keep it very informal to start with, and let the relatives talk.

We all know about the isolation of being a carer, and that doesn't really change when our loved one goes into care. (At least, it hasn't for me). My life still revolves round John, and though people ask how he is, thay don't really want the gory details. I also find my skills as a conversationalist have virtually gone, I have a one-track mind.

So just let them talk about their loved ones, obviously making sure that everyone gets a chance to chip in. They will love you for it!

Later on, when people have got used to each other, and know each other's stories, subjects may emerge that they would like information on, and that's when the more formal talks can come in. Not every meeting, try to keep the balance between chat and education.

I think it would be helpful for someone to talk about the organisation of the home, staffing problems, catering, hygiene etc. You may find them more sympathetic to your point of view if they have a greater appreciation of the problems involved.

Then the diferences between different forms of dementia -- they will notice if they visit regularly that not all residents behave in the same way. It would be helpful to understand why.

Just my thoughts, I think it's a great idea, and I hope your support group is a success.
 

Louise.D

Registered User
Apr 13, 2007
68
0
Essex
I havn't posted for a while as life has been difficult. I wish I'd had the opportunity to attend a support group. My mums dementia was hidden from me and when my dad died I could not beleive what was going on. I had no idea about the different stages and it came as one big shock to me.

I found other residents relatives okay and I did talk to them. They were alot older than me, mainly retired folk. I was only 35 with a young family and found myself having to explain to people that I wasn't mums granddaughter but her daughter. They couldn't understand why she called me mum.

I was also angry, I had nobody to talk to who understood about my mum and the worse part of it was I was totally unprepared for her death and blame myself. Four months later and I'm still beating myself up everyday. If a group had been there for me, I'm sure I wouldn't be in the mess I am today.

Good Luck with your group.
 

May

Registered User
Oct 15, 2005
627
0
Yorkshire
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.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,442
0
Kent
Four months later and I'm still beating myself up everyday. .

Please don`t keep beating yourself up Louise. You weren`t to know and nothing was your fault. Try to allow yourself to grieve for your mother with peace in your heart.

Love xx
 

jc141265

Registered User
Sep 16, 2005
836
0
49
Australia
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?
 
Last edited:

citybythesea

Registered User
Mar 23, 2008
632
0
57
coast of texas
Mom was never in a home, so getting support from that side was not there for me.

The support group that I go to and went to, on occassion was set up in such a way that it is so easy to just want to be there.

The first few moments are everyone introducing themselves and using one adjective to desccribe the week. Sometimes everyone is down, once in awhile you get a smile...because seomething has happened. The hour continues on with one member giving a saying and what it means to him/her. The group discusses how this saying might relate to dimentia. From this we seguay into a little bit of new knowledge on the homefront and then finally into useful tidbits on care.

No one is allowed to come and not talk....the group is very adept at finding that one person and talking them thru their lull. We use this also to bring awareness and have done several fundraisers.....from barbeques to selling helium filled balloons in memory of someone that are released. The fundraisers don't just benefit research but have also been for members who have been on tough times.

The end of the session is set up solely to visit...sort of seguaying into a gossip session. Everyone brings a little something to share...some bring tea, others cookies/cakes. The atmosphere we strive for is that of a caring, compassionate group that one can go to for a shoulder to cry on but also that of a nurturing enviroment that helps one get thru tough times whether it be with knowledge or just a laugh and cry. Hope this helps you out a little.

PS. Our Christmas party was a non-party where everyone that could brought their "child" and a gift wrapped present (for an adult, that would later be distrubuted at a local shelter for those less fortunate)



HUGS


Nancy
 

Marianne

Registered User
Jul 5, 2008
301
0
NW England
I would have welcomed a support group when my dad was in care. I would have welcomed honesty first and foremost.

I would have welcomed a manager that was approacable. A manager who didn't hide away as the one did in the first home my dad was in.

A manager who would have the interests of the resident at heart. A manager who instigated Assessments and was truthful with Assessors. Not a manager who would say the patient is predictable to be unpredictable,as mine did.

A support group where relatives can get together and perhaps have guest speakers popping in to give talks/information on various topics relating to dementia's/behaviour and possibly continuing healthcare.

To be wanting to form a support group I applaud you and wish you all the very best. I wish my dad had been in your home.

Best Wishes
Marianne
 

CJK

Registered User
Mar 28, 2008
14
0
liverpool
My mums in a care home and I would love to have some support, at present my mum has been in and out of hospital several times and is deteriating very fast and having someone or a group to discuss the next stages with and what happens next would be good as I feel very alone at the moment.
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
I'm a support group facilitator

I first started attending a Alzheimer Society support group in April 2001. I then became a facilitator July 2007.

Our groups have one or two facilitators. An open meeting - we sit in a circle and go round, with everyone who wants to talk giving an update on their situation with their loved one. My job is to ensure that everyone who wants to speak has a chance and also to gently cut off those who keep rambling on for days (happens more frequently than you would think :D).

Sometime a person asks for advice on how to deal with a particular situation - aggression, incontinence etc. The other group members will all chime in with what worked for them. The advice can be blunt & to the point. When I started attending, I was asked why I visited so much when my mother was probably not remembering and I was running myself down.

Sometimes people just need to talk and vent. We listen. I think a support group is for the person attending. It is not necessarily about the home a loved one is in, although that would certainly come up.

We also have speakers. We've had speakers from Revenue Canada regarding taxation issues, social workers on how to get through all the paperwork and regulations for care (both at home & otherwise), lawyers and even funeral directors. We tend to have about 2 open meetings to 1 guest speaker meeting. We also have our Christmas socials & summer socials. These are regular open meetings, but with everyone bringing goodies in.

I also attended a support group in my mother's nursing home for a couple of years. There the social worker who ran the group would look into any concerns relatives might have had. But it was more for the families to talk and reassure each other.

I think the primary function is support for the relatives. Information can certainly be obtained from the Alzheimer's Society and other places and made available. Above all, a facilitator is required to keep things on an even keel and to keep everything non-judgmental.

I wish you success with your endeavour.
 

lady racer

Registered User
Mar 12, 2007
15
0
northwest england
relatives support group in the care home enviroment

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?

We have a good relationship with relatives and i have an open door policy so relatives can speak to me whenever they wish whether it is to complain, praise or just for a chat, i still have relatives who come to visit even though their loved ones have passed away.

I was thinking along the lines of having an informal meeting where relatives can chat with each other, but also having a topic to discuss during the meeting, relatives can then choose if they would like to learn more about that particular topic or give it a miss.

I am aware that most relatives access information themselves, but i find a lot of relatives just dont understand dementia care. i also think relatives don't get enough support once their loved one is in a care home.
 

lady racer

Registered User
Mar 12, 2007
15
0
northwest england
relatives support groups in the care home enviroment

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.

We have YTT training on a regular basis, I deliver the training to all the staff this includes kitchen admin domestics the lot, i am even trying to get some of the GP's to attend, I have often thought of inviting relatives to to it, but have not been sure how they would respond, you are the first relative i have heard of that has done this which gives me hope for inviting relatives in the future.
 

lady racer

Registered User
Mar 12, 2007
15
0
northwest england
relatives support groups in the care home enviroment

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?

No your not dreaming,i wish i had a relative that would come and talk to staff and other relatives like you suggest, we try our best to get the life history's of our clients but its not easy and sometimes its like trying to get blood out of a stone. You have given me hope and some very good idea's thankyou.