1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    My husband has just been diagnosed with Alzheimer's after family concerns over his behaviour and memory over the last few years. He's only 59 and in the early stages. Although we seem to be getting lots of help from community nurses and organisations to fill in benefit forms, I'm finding it difficult to come to terms with the fact that the retirement we had planned together cannot be. I know this is a common reaction and I'm doing my best not to feel bitter, but does the feeling go away? Also I was very taken aback as I hadn't realised what a poor relation Mental Health is in the NHS. I've been told that there is a 5-6 month waiting list for tablets until someone is taken off them for my husband to be given them. With an illness that may progress slowly or otherwise, he's still starting on the tablets at a lower level of functioning. Needless to say, we're biting the bullet and the family is helping to buy the tablets privately until he comes up on the NHS list. To me this is just another stress on top of all the form filling,caring and trying to hold down a part time job(now needed to fund the tablets!)I'd welcome some coping techniques as I don't want to strain mylong standing friendships by moaning all the time. There is a positive aspect-as my husbands brain clears of thoughts, his painting is improving!
     
  2. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Susie

    It's difficult to know what to say to you except that I understand how you are feeling (including any bitterness), having gone through this experience with my husband who started showing early signs of the disease in his early fifties and now at the age of 60 has very recently been admitted to an assessment ward for "elderly people with dementia" (!) as his behaviour had deteriorated to the point where I felt I wasn't coping. He may or may not come home again, depending on whether they can find the right combination of medications to stabilise him.

    I'm afraid that in my case it has been a long hard struggle to try to come to some sort of terms with the situation, although I think I have reached some sort of acceptance of the implications, but it has taken time, and a lot of tears and anger. Having said that I still get very upset at times, but I accept that this is inevitable and try to get through by living life one day at a time.

    It is awful because not only are you losing by degrees the person you love, but there are so many financial implications, especially with early onset dementia (and I hate that word too!) - loss of earnings (not only did my husband have to give up his profession at age 55, but I had to leave my full time job some 3 years ago to care for him full time - I'm 59 years old). This means that you also lose years of pension contributions at a time when most people are salting money away for their retirement. There are worries about paying for care that may possibly be necessary later - and as you say, all those plans you both had for your retirement are blown out of the water. No wonder you and many many others are feeling as we do.

    I'm also very sympathetic about your situation regarding the medication - it is simply disgraceful that a person of your husband's age is denied the medication on grounds of cost. If you can use your anger and divert it into fighting this decision (and it takes time and energy which I know are hard to find in this situation), then try to make as much of an issue of it as you can - eg, write strongly worded letters to the Chief Executive of your local Health Trust, to the Head of your local Mental Health Team, to your Member of Parliament, to the Minister of Health, and anyone else who may be relevent!

    I know that feeling that you mustn't put off all your friends by continually harping on about it, but believe me, our closest friends have been only too concerned to listen to me, and anxious to give whatever help and practical or emotional support I need at any time, and it has strengthened these friendships rather than damaging them. We have wept together and laughed together, and I have always made it clear that the most important thing they can do is just listen. You will soon find out who these friends are, and you will come to realise that other friends and aquaintances find it too difficult to get very involved - you can just hold back a bit with these and the friendship can also continue but on a different level.

    I feel in my case that finding out as much as possible about the illness helps in an understanding of how it affects your husband and yourself. This learning process is hard, and slow, but prepares you for changes in your husband's condition so that you can deal with things better if they arise, but I guess that this is a personal inclination, and may not apply to everyone.

    There are many sources of advice and information outside of the Health Service and Social Services, and I have found that the Alzheimers Society and this forum are a great help - also, just knowing that you are not the only person feeling the way you are at any particular moment is an enormous help. If you want to just sound off after a bad day, you know that the other forum members will understand exactly what you are saying!

    The Alz Society factsheets are good, and many of the Age Concern factsheets are relevent and very detailed and useful.

    Take advantage of any support and help that is offered and which you feel will be appropriate, whether from "official" sources, voluntary organisations, friends, relatives or wherever. It's very easy (almost inevitable) to feel guilty that you are not doing enough, but try not to feel like this, as you will be doing your best. Try to give yourself some time - for example a friend of ours often took my husband off for a walk for an hour or two, which she was very happy to do, and which gave me a little break.

    Above all, when things are difficult it's important to remember that is the disease, and not your husband, that is causing the problem.

    Believe me, I do feel for you and although things are very tough here at the moment, I do feel stronger in many ways than I did earlier on - the initial state of shock, fear and anger does become less intense after a while, but it does take a very long time. I can't even explain how this happened, and there are still bad times, but just bear in mind that other people will be thinking about you and wishing you well after reading your message.

    With kindest thoughts

    Ruthie
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,594
    Female
    Dundee
    Dear Susie

    I have every sympathy with you. My husband was diagnosed two and a half years ago and although he is older than me I feel that I am going through the same feelings as you are as I am still early 50s. I agree that you must fight in any way you can to get the medication that your husband needs. it's ridiculous that it's not available. We must have been lucky here - I don't know if it has to do with post codes but we had virtually no waiting time. I'm interested in what you're saying about friends. We still haven't told friends - only family - although the diagnosis was over two years ago. I'm not sure what to do about this as while things are going well I feel my husband deserves to meet with friends without the inevitable feelings of sympathy. I know this is possibly not sensible but it's something we've agreed on and we will probably change our minds as time goes on. That's what makes this site so important to me. I feel I can discuss things, ask questions and moan if necessary! This site has allowed me to find out what I need to know and I feel it is gradually preparing me for the future.

    Like Ruthie I feel that I have become stronger over the last two years. I still have dreadful times when I think what the future holds but on the whole I have realised that I have to hold on strongly to what we have just now and appreciate the fact that things are still relatively good. Reading the posts on this site have made me realise how lucky we are. When the bad times eventually come I'll deal with them but I feel much more informed - mostly due to this site - not to the input from professionals. (For instance I recently looked into the Eduring Power of Attorney issue due to what I've read on this site.)

    Take care - all the best,
    Luv
    Izzy
     

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