Young people with Alzheimer's

[elizebth g]

My husband was diagnosed with early onset alzheimers in Feb 2012 aged 59 I feel there
is no help because of his age I was told any services he would need because he is under
65 I would have to pay for them I just feel there is no support anywhere I was told because it is a age-old there is nothing out there for this age group I just feel you are
left to get on with it yourself the past 6 months I have no contact with anyone we had a nurse out to start him on Arricept but due to his stomach problems he couldnot take this drug got a letter last week to go to a resource centre they were asking how he was getting on with his treatment they did not put it in his files to say he was off them as far as the centre knew he has been taking them for 6 months I find they dont know what to do with with alzheimers I myself just find it shocking told to come back next year to get accessed again no support nothing I find it hard coping with it I work at the moment but dont know for how long and if I give up my job to care for him I get £58.00 pounds per week I feel this is a insult I care for him now but cant get the carer's allowance because I earn more than £100.00 a week but I still have to work and care for him I feel the goverment have a lot to answer for
I feel hurt angry heartbroken that we have to deal with ourself were is all this help I fear for the future and what it brings I know it gets worse so who is out there to help
us my husband was paid off through his ill health and had good salary our stander of living has dropped and all they awarded him was the middle rate of care allowance do you have to go begging for more they know what Alzheimers is it is not something you get better with it takes everything away from you I think there should be Alzheimer doctors,nurses,after all you have heart,lung,cancer,doctors nothing for Alzheimers why is that I think because it is age-old they just dont care and to be honest I am struggling now what will it be like next year does anybody else feel like this or am I just hurt and angry I am losing my husband to this terrible illness I have great family support they have helped more than anyone but as the illness progresses
who is there to help you 24/7

 

[jan.s]

Hi.

I am sorry to hear about our husband. Mine was diagnosed at 58, and i do know the struggle you are facing to get help.

Because he was under 65, our social worker came from the community mental health team, rather than Social Services. I have to say, after my initial fight to get help, she has been worth her weight in gold.

I accessed this service through the consultant's secretary, after i had been passed from pillar to post. The consultant usually sees people over 65, but he continued with my husband.

I think your first port of call needs to be your GP, and explain the situation. We were referred or help to the consultant.

If necessary make a nuisance of yourself to get help. Start with the gp and work from there. A few sobs on the phone go down well too. Dont even try to be brave.

I hope this helps.

Jan x

 

[zeeeb]

Yes, i know where you are at. I'm in Australia, and it's very similar here. Come in for your regular assessments, but as for getting practical help, no, you're not old enough. My dad still works for a living, runs his own business, and has to try and care for mum on the side in his off hours.

They also live in the country, so there are basically no services out there for them in regards to alzheimers, so they have to travel over 2 hours for the appointments.

I don't know where to start to try and get them any help. It's seen that because dad is in good health, it's just up to him to blunder along and sort it all out. And for someone who is a tradie, he's never been one to do the caring, he's never done much on the parenting side, so has no experience in caring in general, let alone caring for someone with alzheimers.

 

[seaurchin]

Hello Elizabethg,

I am sorry to learn of your situation. It is very difficult coping with this illness and the financial implications too. As you say there are few facilities available for younger sufferers which doesn't help.

I receive funding to pay for a carer so that I am able to continue working.

I found that you had to keep pushing for help and funding and this forum is a great place for support as people here sadly understand the intense pain this illness causes to partners and families.

My husband's consultant also accepted him as a patient even though he is below the age of 65 and whilst he has been excellent I believe resources are more limited now and we see him much less than we did. Its heading now to one annual visit when it was once every 3 to 4 months.

My focus has changed to accepting the condition my husband has and trying to enjoy each day we have, as best we can. I have bad moments and times of extreme grief which are hard to handle but I just muddle along and try to find things to occupy myself so I don't think too much.

I don't know whether my post helps you at all but I am thinking of you.

I hope your situation improves soon.

Best regards,

Helen

 

[Countryboy]

Hi if your husband has early on set Alzheimer’s he could continue at work until age of 65, I was diagnosed aged 57 and carried on working until my retirement at the age of 65 only retired then because I thought having stated at age 15 and working fifty years was enough remember your not on the scrap heap just because you have dementia