Early Onset - What would benefit you?

[JigJog]

Hi,

I'm just wondering if I can pick your brains and get some ideas for a moment please.

My husband is recently diagnosed at 62 and is still fit and active. We would like to meet others in our area in a similar position.

I have been to the local Memory Cafe but although a great group, it is not appropriate for his needs. The people there were much older and their situation was quite different. The talk was about reminiscence boxes and picture books mainly about the war.

I have contacted my local Alzheimers group but there is no funding to run such groups at the moment. There may be the chance to join another group but this is based at a day centre for older people.

I have asked the adviser if it possible just to introduce younger sufferers in the local area to each other and let us take it from there. If friendships form, then that would be fantastic without the need for organised activities at a centre.

I may just be plain naive I can be but that's why I'm here.

If you are a younger sufferer or their carer, what would benefit you? What would you most like to do?

If you would like organised meetings at a centre, what form would you like them to take and what would you like to do there? Would you be interested in just being introduced to others in your locality and allow friendships to develop from there?

There is so little out there for younger people, we must push for more.

Any thoughts or feelings would be appreciated.
Thank you,
JJx

 

[Pookie]

That's a great idea.I wish you all the best because I have no-one to talk to only Peter. And new friends are hard to come by.Once dementia is mentioned they vanish.

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[marionq]

I too feel the memory cafés are not right for my husband though he is 80. He does like the football groups he goes to very much and goes twice a month. It is the only thing he regularly asks me about and is up like a spring lamb and ready to go on those days. He likes the chat with other men and feels on stronger ground talking about sport.

 

[Noorza]

I'm just wondering if a call to your local MIND might be fruitful as they deal with all age ranges?

 

[creativesarah]

I get benefit from going to a cardmaking and scrapbooking group once a month, is there a hobby that he was interested in that you could find a group that he could go to in your area.

I have considered volunteering at our local library as a way of meeting people I have had a photo exhibition in the library this month so I have met lots of lovely people.

I have got into taking photos and sometimes friends take me out as I cant drive anymore. I go to a local camera club once a month as much for the social side as for the photography.

Does he like walking?

I have been thinking about having a craft group at my house I live in a village and thought that way I wouldnt have to go out but people would come to me. I have met a young woman in the village who is in a wheel chair and I think we could start it together

 

[NanLorac]

My husband is 63 and the same, still active. He goes to the memory cafe because he enjoys the male company of carers and Dementia sufferers. They play games while the women get round a table and have a coffee and talk. He attends a under 65 group and the guys all just talk, the noise of them all laughing is wonderful to hear. Now a singing for the brain is starting in the new year.

Last year we got a Yorkie because my husband was lonely at home while I worked. He took the dog out every day by himself but now his vision is giving him problems with steps so I tag along. At Christmas we got a tablet. I download the newspaper's every day and he does crosswords. The touch and the swipe action seems easy for him. I also got a Nook and I download biographies from the library on to it. A year on, he doesn't tell me what he has read but it keeps him reading and puts in some time for him during the day.

He was working 2yr ago.

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[plumbrite66]

Early Onset

Hi,

I'm just wondering if I can pick your brains and get some ideas for a moment please.

My husband is recently diagnosed at 62 and is still fit and active. We would like to meet others in our area in a similar position.

I have been to the local Memory Cafe but although a great group, it is not appropriate for his needs. The people there were much older and their situation was quite different. The talk was about reminiscence boxes and picture books mainly about the war.

I have contacted my local Alzheimers group but there is no funding to run such groups at the moment. There may be the chance to join another group but this is based at a day centre for older people.

I have asked the adviser if it possible just to introduce younger sufferers in the local area to each other and let us take it from there. If friendships form, then that would be fantastic without the need for organised activities at a centre.

I may just be plain naive I can be but that's why I'm here.

If you are a younger sufferer or their carer, what would benefit you? What would you most like to do?

If you would like organised meetings at a centre, what form would you like them to take and what would you like to do there? Would you be interested in just being introduced to others in your locality and allow friendships to develop from there?

There is so little out there for younger people, we must push for more.

Any thoughts or feelings would be appreciated.
Thank you,
JJx

Hi, Sounds like what we went through
,Wife is now 67 and still early stages,But we are lucky that she has funding to attend day care 3 days a week and she loves it ,Cant wait to get there.She is in with all ages and stages but doesn't mind she even loves helping the others and the carers think shes great,so its not her that gets upset its mainly me,i have to learn to get used to it.But you are right I don't think there is as much help for younger early onset people,I live in NZ I don't no what its like for you.

 

[Countryboy]

If you're diagnosed with dementia and you're still fit and active why would you not continue to Work I worked for eight years after my diagnoses until my retirement on my 65th birthday but after 6 months of retirement I wished several times I had continued at work longer nearly 71 now and would go back tomorrow if I could ,

only visited memory café twice there not for me

Tony

 

[JigJog]

Thanks everyone for your comments. All very helpful.

Hi Tony,

He is physically fit and active but not mentally. His job was Financial Director of a company. He had begun to make some very serious mistakes. There was no way that he could carry on at work.

I'm glad that you were able to carry on for so long after diagnosis.

 

[kathleenr]

Hi Im in a similar position as my husband is 57 and active and I am still working and hope to continue. We are in Merseyside and I have set up a carers group as there wasn't one locally. we avoid most of the dementia activities as the members are so old and its depressing for him, but a few very close friends haven't disappeared and they take him out walking, the local amateur football, and we are now moving to a gardening project two half days a week which he sees as volunteering but will keep his skills up and help him socialise. Its extraordinarily hard when they are young; and one feels incredibly isolated- so many friends and also family members just cannot deal with it. The pressure on the spouse to take over all the things that half of the couple did adds to the pressure too!
At my worst times I feel incredibly low and very lonely, but there are good days too.

 

[jaymor]

I have sent you a private message.
Jay

 

[JigJog]

Thanks to both Jay and Kathleen.

I have received a message from the local Alzheimers Society group, only this morning, to say that they now have four people who are interested in forming a group and they are going to arrange a meeting soon.

Perhaps if they just do the initial introduction then we can arrange to continue to meet ourselves and support each other that way.

You are right Kathleen about pressure on the spouse to take over more things and with us hoping to continue to work, it isn't easy. But as you say there are good days too.

Take care both,

JJx

 

[NanLorac]

Jig Jog,
Forming a new group is good news for both of you.

I found I was so alone at the groups we attended as I am only 59 and my hubby is 63. I am glad I kept dragging him along as other younger couples have appeared and there are a few of us and so life is so much better. The difference in my husband over the past few months is fantastic and I feel as if I am coping a lot better now too.

The good thing about the Memory cafes and carer groups through the Alzheimer Society is the information you get and that puts you in touch with other things that are going on in your area. We are attending 2 conference next month, one is for Early Onset Dementia and I am attending 4 week carer education program, What is a carer, Reduce stress, Legal matters and the last one is Dementia.

Good luck, Carol

 

[JigJog]

Thanks Carol. Very reassuring.

JJx

 

[creativesarah]

I have started my craft group at home and it went really well

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[WGA]

I too find that there is very little for younger people with dementia and also young carers. As a young Carer myself (20 years old), I simply have nobody close to my age who understand what it's like caring for someone with dementia - no 20 year old will understand what it's like having a dad with it.

We haven't tried the cafés yet as dad is still in his early stages and I don't think it sounds like something he would like. I, however, would love to meet people who are carers. I just feel like I wouldn't fit in though. I'd love to meet anyone that can relate to me more - I think I might just feel a little uncomfortable with a group of people who are all 70+ years old, as they probably would if they were the only one with a group in their 20s.

I would love to help and support the organising of a group in which younger carers can meet up! If anyone lives in London and is up for trying to make something happen then lets! I know that there will be no one my age but anyone that is younger than the 'normal' age to go through this! I can just feel like nobody understands....