Advice on groups please

SarahJC

Registered User
Nov 9, 2023
53
0
Hi @SarahJC the Alzheimers.org site has a support page where you can enter your location and it will show any support/activity groups in your area.

Hello Dave63, thanks for the link, will have ago.
 

Pat2592

New member
Jan 4, 2024
5
0
We attend a weekly Memory Cafe which my husband likes. We attend church on Sunday mornings and go food shopping, but he won’t go anywhere else. No other Memory Cafés, or church events, visits to friends or relatives. No local cafés, lunch out, afternoon teas or local concerts/gatherings. Holidays are a thing of the past sadly. There are plenty of groups in our village, and ones in the area but he just wants to stay home, watches uTube videos or reads. Help! I feel like I’m stuck in Groundhog Day.
 

Knitandpurl

Registered User
Aug 9, 2021
877
0
Lincolnshire
Thank you Cking for your post. I think this is why I am wracking by brains to find something because I read posts about what a care home will provide and the person less isolated to be with people of her age. My mum isn’t isolated though because we take turns living with her. It’s just some days I feel I need something to lift me, as in a group we could do together, as i know my mum picks up on things quickly.
I think your expectations of what a Care Home would provide socially for your Mum are based on hopes rather than reality. Over the years I’ve visited various relatives, former neighbours etc in Homes (most recently my Mum for 5 years) and rarely did I see residents interacting with other residents , only visitors and staff, and this includes Activity Sessions. I asked my Mum on a number of occasions why she didn’t talk to other residents, but I never really got an answer. I think for the most part it was initiating a conversation that was too difficult for them- they could respond, but not start.
 

SarahJC

Registered User
Nov 9, 2023
53
0
We attend a weekly Memory Cafe which my husband likes. We attend church on Sunday mornings and go food shopping, but he won’t go anywhere else. No other Memory Cafés, or church events, visits to friends or relatives. No local cafés, lunch out, afternoon teas or local concerts/gatherings. Holidays are a thing of the past sadly. There are plenty of groups in our village, and ones in the area but he just wants to stay home, watches uTube videos or reads. Help! I feel like I’m stuck in Groundhog Day.
Hello Pat 2529, sounds like you have a lot going on locally. We did go to a Menory Cafe group which was great, a couple of hours for my mum and I got a chance to chat to carers which I liked. Perhaps we need to re-register but not really sure as my mum has changes quite a bit since a year ago. I understand you feeling exacerbated with the situation, very isolating, there maybe helpful advice later on this thread, I have been given some useful ideas …
 

SarahJC

Registered User
Nov 9, 2023
53
0
I think your expectations of what a Care Home would provide socially for your Mum are based on hopes rather than reality. Over the years I’ve visited various relatives, former neighbours etc in Homes (most recently my Mum for 5 years) and rarely did I see residents interacting with other residents , only visitors and staff, and this includes Activity Sessions. I asked my Mum on a number of occasions why she didn’t talk to other residents, but I never really got an answer. I think for the most part it was initiating a conversation that was too difficult for them- they could respond, but not start.
Yes I do wonder if this will be the situation but just trying to not overlook a basic need. Sometimes I am okay with our situation but other times also think it would be good for us and is a learning curve, negotiating around caring for my mum with dementia, thanks
 

Foundagoodbooktolivein

Registered User
Apr 28, 2024
14
0
We attend a weekly Memory Cafe which my husband likes. We attend church on Sunday mornings and go food shopping, but he won’t go anywhere else. No other Memory Cafés, or church events, visits to friends or relatives. No local cafés, lunch out, afternoon teas or local concerts/gatherings. Holidays are a thing of the past sadly. There are plenty of groups in our village, and ones in the area but he just wants to stay home, watches uTube videos or reads. Help! I feel like I’m stuck in Groundhog Day.
 

Foundagoodbooktolivein

Registered User
Apr 28, 2024
14
0
I don't know what I am supposed to take my husband to. He is totally deaf, can't walk with rheumatoid arthritis in his feet and can't go near other people because he is afraid of catching things from them because he has been left with only one lung due to lung disease! I am quite unable to leave my home because of him, as no one offers baby sitting for adults. I can't even find a retired nurse who would be willing to dress his wounds on his feet. He totally dislikes the nurses at his G.P. surgery because they make it obvious they don't like dressing his feet. I'm no more willing to dress them than they are, so if anyone knows how to get a reasonably priced health care assistant privately, who could visit him at home to do dressings, I would be grateful, (I have rung all the Podiatrists in the area, but no one will do home visits.) I may be wrong, but I don't think a lot of the men really accept it that they have Alzheimer's disease. Yesterday he tried to tell me the Beatle George Harrison was still alive and got really cross because I pointed out he'd been dead for nearly 20 years! Mostly he doesn't hear a word I say, so I don't say anything anymore. No point in it for either of us. NHS hearing aids were useless and it is not thought that expensive private ones would be any better, since the hearing loss is in the brain, not the ear. I'm desperate to go to my best friend's funeral but I'll have to stump up over a hundred pounds in taxi fare to go - I don't drive and no one would take me.
 

SarahJC

Registered User
Nov 9, 2023
53
0
Morning Foundagoodbooktolivein, sorry not yet found out how to copy/paste user names! You have a lot going on and sound like you need more support than you are currently getting and i know not easily achieved.
But i hope maybe the forum will respond to give some practical advice, as you sound like you need this.
Have you had a Carer's assessment yet, I've not yet got this myself so don't know from experience but i think important for you. Also contact the forum for advice.
Also Adult Social Care, ring them and let them know your situation, they need to complete a home visit/assessment, possible care package. This takes time to get in my experience but i guess it is priority led, and i hope you may have more joy than me! I should think so.
Do you need to contact GP again, as perhaps a referral to district nursing team in needed regarding husband wounds on feet.
As already mentioned, i am negotiating my was around our dementia journey and realize all our circumstances are different but whatever the situation it is very challenging at times and overwhelming.
I've read many times on here something around 'try to live in the the person's world of dementia as you will never win the battle trying to convince them otherwise'. I know easier said than done sometimes but a good mantra to try to go by. So please reach out and also contact this forum support line.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,669
0
We attend a weekly Memory Cafe which my husband likes. We attend church on Sunday mornings and go food shopping, but he won’t go anywhere else. No other Memory Cafés, or church events, visits to friends or relatives. No local cafés, lunch out, afternoon teas or local concerts/gatherings. Holidays are a thing of the past sadly. There are plenty of groups in our village, and ones in the area but he just wants to stay home, watches uTube videos or reads. Help! I feel like I’m stuck in Groundhog Day.
@Pat2592 You could be describing my husband only he will not go anywhere at all. I had a carers assessment and get two periods of respite per week. It’s not a lot but does mean that it can get a break away from caring. Have you had an assessment, if not it might be an idea to contact your local adult social services to arrange one.
 

maggie6445

Registered User
Dec 29, 2023
1,179
0
Morning Foundagoodbooktolivein, sorry not yet found out how to copy/paste user names! You have a lot going on and sound like you need more support than you are currently getting and i know not easily achieved.
But i hope maybe the forum will respond to give some practical advice, as you sound like you need this.
Have you had a Carer's assessment yet, I've not yet got this myself so don't know from experience but i think important for you. Also contact the forum for advice.
Also Adult Social Care, ring them and let them know your situation, they need to complete a home visit/assessment, possible care package. This takes time to get in my experience but i guess it is priority led, and i hope you may have more joy than me! I should think so.
Do you need to contact GP again, as perhaps a referral to district nursing team in needed regarding husband wounds on feet.
As already mentioned, i am negotiating my was around our dementia journey and realize all our circumstances are different but whatever the situation it is very challenging at times and overwhelming.
I've read many times on here something around 'try to live in the the person's world of dementia as you will never win the battle trying to convince them otherwise'. I know easier said than done sometimes but a good mantra to try to go by. So please reach out and also contact this forum support line.
@SarahJC Copy and paste username you @Foundagoodbooktolivein Space before @ eg. @username then space before message. Does that make sense?🤣
 
Last edited:

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,669
0
I don't know what I am supposed to take my husband to. He is totally deaf, can't walk with rheumatoid arthritis in his feet and can't go near other people because he is afraid of catching things from them because he has been left with only one lung due to lung disease! I am quite unable to leave my home because of him, as no one offers baby sitting for adults. I can't even find a retired nurse who would be willing to dress his wounds on his feet. He totally dislikes the nurses at his G.P. surgery because they make it obvious they don't like dressing his feet. I'm no more willing to dress them than they are, so if anyone knows how to get a reasonably priced health care assistant privately, who could visit him at home to do dressings, I would be grateful, (I have rung all the Podiatrists in the area, but no one will do home visits.) I may be wrong, but I don't think a lot of the men really accept it that they have Alzheimer's disease. Yesterday he tried to tell me the Beatle George Harrison was still alive and got really cross because I pointed out he'd been dead for nearly 20 years! Mostly he doesn't hear a word I say, so I don't say anything anymore. No point in it for either of us. NHS hearing aids were useless and it is not thought that expensive private ones would be any better, since the hearing loss is in the brain, not the ear. I'm desperate to go to my best friend's funeral but I'll have to stump up over a hundred pounds in taxi fare to go - I don't drive and no one would take me.
Hello @Foundagoodbooktolivein I am so sorry to read about all of the issues that you are facing. Have you contacted the adult social services in your area for a needs assessment for your husband and a carers assessment for yourself. As a result of my assessment I get two respite sessions per week. Only a few hours but it helps. AgeUK in some areas also provide a sitting service.
I can understand that it was tempting to say that George Harrison died twenty years ago, but the best way to deal with that sort of issue is just to agree with your husband because in his mind he truly believes what he says is true. As someone on here regularly says, we have to live in their world. Best to say something like, hmmmmm is that so.
 

SherwoodSue

Registered User
Jun 18, 2022
700
0
My mum doesn’t like groups of confused old people😮

She does enjoy the singing for the brain sessions
 

Arlington Chops

New member
Jul 29, 2023
1
0
I'm full time carer for my mother-in-law and in the beginning found it hard to find groups we could join. Eventually I found a music therapy group through Dementia Concern. There are only six of us (three carers plus those we look after) and as the age group for those needing care are all in their late 70's and 80's the songs are mainly from the 50's. We start with a cup of tea and a chat then take it in turns to choose songs to sing (the words are printed) whilst our music therapy worker plays the saxophone to accompany us. We all laugh from the moment we walk through the door, sharing stories, supporting each other and have a good sing song. My mother in law loves it and even belts out a couple of solos which she never would have done pre the group but feels so comfortable there that it just flows freely. We play music at home for her all the time and it's made a massive difference to her mental well being, the group is the icing on the cake really as it's something she genuinely looks forward to. I've just enrolled us for a trial with a swimming group that caters for people with disabilities - holidays are a bit tricky and she loves to swim so I thought we'd give it a go. It won't be easy as her mobility is limited but they have lots of equipment and helpers in the pool and I'm hoping that she'll love it once we're in the water and she can feel free. It's taken me nearly six months to find these two things but Dementia Concern have been wonderful - they also run carers sessions with respite for those they look after - speakers come in and it's a chance to have a chat with people that understand. We haven't made it to one yet but planning to next month. Not sure if anything I've said will help as obviously everyone's interests and needs are different but it might be worth contacting Dementia Concern to see what's available in your area. Best of luck.
 

SarahJC

Registered User
Nov 9, 2023
53
0
Thanks Maggie6445, but no can’t do, I’ll try posting on laptop copy/paste. I’m actually okay with IT stuff 🤣
 

maggie6445

Registered User
Dec 29, 2023
1,179
0
Hi, yes I have thought about a day centre but was surprised how much it costs around £80 per day. I have put this on the back burner for time being as have recently arranged a carer to come in for 1.30 hours so I can work/care for my mum on occasional week both clash. That’s not cheap either! But peace of mind and again some stimulation.
Hi @SarahJC , my oh and I go to dementia cafes ,games and singing. It's been my lifeline. We've made friends with others and go out for a cafe meal together once a week and local amateurs musicals.

I don't think it would have been our thing pre dementia but I like the support network! As time has gone on my oh can no longer do the games so he sits and watches or the volunteers help him . He doesn't always remember words to songs so we sit and sway or tap hands to the rhythm. He certainly can't read songs anywhere near fast enough .

Some weeks the chat gets too much for him and he falls asleep. But.. this isn't just about him,I need the company too. He comes with me because he needs 24/7 supervision.

I have got him in a day care centre one day a week . It's at a non profit housing association and costs £35 a day so keep looking around. I used part of his attendance allowance to pay for it. X
 

SarahJC

Registered User
Nov 9, 2023
53
0
Hi @maggie6445, thanks for your reply and sounds great what you have for both your husband and for you. Will keep going with the search and trying different groups xx
 

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