Where is all the support?

Nosras

Registered User
Sep 20, 2013
7
0
I am the carer for my husband who was diagnosed with Alzheimer's at the age of 55. We returned to England after living in Australia for 12 years as our boys live here and Nigel wanted to be close to them. I am struggling with the lack of support and services that are available in this country. I have to work full time as we are not entitled to any benefits for two years as we left the country to live despite paying into the system for 25 years. Nigel sits on his own all day in front of the Tele and sleeping. He is retreating more and more into himself and he desperately needs social activities to stimulate him during the day. I cannot believe there is nothing out there for him. Does anyone have any suggestions or advice? I feel so down by my lack of ability to find anything and feel like I am letting Nigel down. We live in Leicestershire.
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
I think it would be good to ring the local branch of AS as some do have dementia support workers. If so one is likely to visit you both and may be able to suggest some activities. Also your Social Services may well offer day centre activities, for which you would no doubt for financially assessed.

I had little support other than that I found for ourselves. By asking around I found someone who had employed someone to care for her husband. I used this lady for just one day per week to enable me to get out. I did not work but still needed time to shop, hair etc.

If you google Age UK, Admiral Nurses and Crossroads you may find some possible support there as all of these work to support those with dementia and their carers. Sadly as we are very remote none of them were able to help me but others do speak well of them.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Sorry you are having so much trouble finding support. There is a lot out there but sometimes it takes a while to find your way around it.

I would also get in touch with your local carers organisation - it might mean grabbing a morning off to go to a carers cafe but my bet is that you will find out a lot of info about local services but first off give them a buzz and see what info they can give you. I'm not sure where you are in Leicestershire but here are a couple of links
http://claspthecarerscentre.org.uk/page?page=About Us&parentNavigation=391

and
http://www.leicspart.nhs.uk/_Involvingyou-Carerssupport.aspx

Good luck and I hope you find something suitable quickly
 

leicester61

Registered User
Aug 26, 2012
146
0
Leicestershire
I am the carer for my husband who was diagnosed with Alzheimer's at the age of 55. We returned to England after living in Australia for 12 years as our boys live here and Nigel wanted to be close to them. I am struggling with the lack of support and services that are available in this country. I have to work full time as we are not entitled to any benefits for two years as we left the country to live despite paying into the system for 25 years. Nigel sits on his own all day in front of the Tele and sleeping. He is retreating more and more into himself and he desperately needs social activities to stimulate him during the day. I cannot believe there is nothing out there for him. Does anyone have any suggestions or advice? I feel so down by my lack of ability to find anything and feel like I am letting Nigel down. We live in Leicestershire.

Hi Nosras

My OH was diagnosed age 52 and we too live in leicestershire, unfortunately there really isnt a great deal around, however the local AZ society did come out and have a chat with us and also suggested getting in touch with social services which i did, they however felt that as i was currently managing everything for him that they could not currently offer anything, but if i did find that i needed them in the future i could get in touch with them. There are a couple of memory cafes around but when i visited them (alone) they really wouldnt have been suitable for my OH, he would want to be around people his own age. Theres a lot of people on here with great advice and suggestions so im sure you will get some help here. Please get in touch if you want especially as we live in the same area.

Suz
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
It sounds as if your husband could benefit from something like a day centre. I think you would have to make a contribution to pay for his days spent there but they would pick him up and bring him home. Your local Social Services could advise.
 

Nosras

Registered User
Sep 20, 2013
7
0
Thank you to everyone who replied to me.

Thank you to everyone who replied to me. I tried to respond to each person individually but don't seem to be able to do this. I have been in touch with Alzheimers but unfortunately they couldn't offer anything. All support groups are in the day which I can't attend as I am working. They have a side by side project which is supposed to give Nigel four hours of social support but he has been on their waiting list for six months. I have asked how I am able to meet other people in the same area and have been told to use this forum. Not sure about others but this is not working for me. I really need to find a way of getting together with others in this area to meet face to face. Things can only change when a number of people are together asking for the same things. I am so down, lonely and frustrated. I do not believe I am the only person dealing with this!!!!!
 

starryuk

Registered User
Nov 8, 2012
1,323
0
Hi Nosras,
I too, brought my mum back from abroad and, like you, felt frustrated that she was not able to access any allowances etc although she had a British pension (a civil service pension and oap pension) and was paying UK tax and had done all her life. I feel for you.

Our doctor's surgery seems to have a system of support/advice for carers. My friend, who cares for her dad, has found it helpful for advice. But perhaps you have tried that already. The local church also advertises carers' meetings.

Here, there is a dementia cafe on a Saturday morning. My friend has found it very helpful for her and has made contact with other carers there, which has enabled her to find someone to come and 'sit' with/entertain her dad when needed. Also to find two singing groups which her dad loves.

I was wondering if it would be possible to take a morning off work in order to visit a weekday group. Just to introduce yourself. There will be other carers there who might have ideas for you. Just a thought.
 

Fenton12

Registered User
Dec 19, 2014
12
0
We spent the first year with no support and then someone told me we needed to be referred to the Memory Clinic (Mental Health Team) and since then everything has fallen into place. Paul goes into daycare 5 days per week - 2 are subsidised and the other 3 are full price along with taxis to take him there and back. I claim direct payments and these pay for the support. I hope perhaps this helps
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Hi Nosras,
I too, brought my mum back from abroad and, like you, felt frustrated that she was not able to access any allowances etc although she had a British pension (a civil service pension and oap pension) and was paying UK tax and had done all her life. I feel for you.

Our doctor's surgery seems to have a system of support/advice for carers. My friend, who cares for her dad, has found it helpful for advice. But perhaps you have tried that already. The local church also advertises carers' meetings.

Here, there is a dementia cafe on a Saturday morning. My friend has found it very helpful for her and has made contact with other carers there, which has enabled her to find someone to come and 'sit' with/entertain her dad when needed. Also to find two singing groups which her dad loves.

I was wondering if it would be possible to take a morning off work in order to visit a weekday group. Just to introduce yourself. There will be other carers there who might have ideas for you. Just a thought.

that's crackers if she has been paying uk tax. I met someone the other day from south africa who walked into the country, had an urgent hospital appointment and very fast triple bypass surgery and full recovery in hospital and back to SA - how does that work when someone paying UK tax (which he was not and didn't have the pension etc) can't claim at all!!
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
Your husband is very young and obviously has an early onset variant. My husband was diagnosed aged 67 and even at that age it seemed we did not really fit a lot of the services as they were for much older people. In my area, Herts, they do now I believe have an early onset group.
Does your husband have a specific diagnosis?
A friend I met via our support group whose husband was younger than mine, under 60, did get support from Headway but they live in Surrey. I did not try here in Herts.
I also got lots of help from Carers in Herts.
I also found the same as you with the Alzheimers Society in that the meetings were not at a good time for working carers.
I am sure there is help out there but sometimes it is hard to locate it. I hope you find something appropriate.
Tre
 

1mindy

Registered User
Jul 21, 2015
538
0
Shropshire
My OH is now 70 , diagnosed at 65. Just got him into day care 2 days a week which we pay for. Never being very sociable I thought we would struggle with him accepting it. He loves it, it gives him so much more than being at home with me. He has his own friends,does all activities and is not too bothered about coming home at the end of the day. This will take a chunk of your income but will benefit him greatly if he will go.
 

tigerlady

Registered User
Nov 29, 2015
427
0
I am the carer for my husband who was diagnosed with Alzheimer's at the age of 55. We returned to England after living in Australia for 12 years as our boys live here and Nigel wanted to be close to them. I am struggling with the lack of support and services that are available in this country. I have to work full time as we are not entitled to any benefits for two years as we left the country to live despite paying into the system for 25 years. Nigel sits on his own all day in front of the Tele and sleeping. He is retreating more and more into himself and he desperately needs social activities to stimulate him during the day. I cannot believe there is nothing out there for him. Does anyone have any suggestions or advice? I feel so down by my lack of ability to find anything and feel like I am letting Nigel down. We live in Leicestershire.

I have just found this thread. I too live in Leicestershire, but cant offer much practical advice, as my husband is now in a care home. When he was at home, however, I did try for the befriending service offered by the AS but I was told there was a waiting list, and that they couldnt even put me on it as, at that time, my OH didnt have an official diagnosis, although he had had a memory test and only scored 8, and had his driving licence taken away, but he hadnt had a brain scan to find out what sort of dementia he had.

Do you have a community psychiatric nurse (CPN) allocated to your OH? If not you should see your GP,with your husbands diagnosis, and get referred. They made regular visits to me, as did ladies from the AS, to inform me of benefits and help I could get

Also I found AGE UK very helpful - you can find out a lot from their factsheets - and I was also visited by a lovely man who worked for AGE UK in liason with the CPN, and he and the CPN finally managed to get my husband to have a brain scan.

I find it shocking that you cannot get any benefits for 2 years when you have payed into the system for so long, when you think of all the things that go on in this country as mentioned by fizzie in her post.

I will send you a pm, telling you where I am in Leicestershire, and if you are near my area I may be able to help more, but you wont be able to reply to me until you have posted 10 times