1. Expert Q&A: Living well as a carer - Weds 28 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Wednesday 28 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Dear egg,
    I was reading back over some of the messages (not sure I really understand threads etc...) and I am surprised that (unless it's there and I can't find it) not many people seemed to talk about the problem of how to help people - usually younger? - who are aware of the significance of the diagnosis, and worried by it. Everyone seemed to focus on the practical aspects of caring, but helping your husband to cope with the emotional side of it seems to be much harder. I haven't any experience of this but surely others have? Or maybe some of your local support agencies can help? I think if you can find the right thing to say - whatever form of words you can find which feels right for you and reassures him -it would be a help.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Oh, this is/was the most difficult part for me.

    I never did tell Jan what she had/has, and I asked the doctors not to. After living together so closely and for so long, I had a clear impression that the information would have cracked her.

    As it was, the situation was dire, but we always talked of her 'memory problems'. Let's be truthful - Jan was a whole amount brighter than I, and she may have realised and have been keeping quiet to protect me!

    There are no firm rules in all of this. Just as we say 'day to day', I think we should also believe 'person to person' - i.e. you need to make judgements on the ground.

    Jan trusted me totally. Such a huge burden to bear.
     
  3. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    being aware of dementia - or not

    I guess the situation is like cancer - but even more depressing because there is no possibility of a cure. Some people want to know and others don't. But with AD maybe the carer is even more important because they are really carrying the burden for the sufferer.
    That's what you said, isn't it? that it was a huge burden. It's really sad to think there was no way of lightening that load.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Angela

    don't get me wrong, no burden that Jan represented was one that I was/am unwilling to bear.

    Waxing lyrical, there's a Sinatra song "in the wee small hours of the morning, while the whole wide world is fast asleep" - well, when I was caring for her at home, I wasn't and that was when the burden felt worst.

    There's also a Hollies song "He's my brother" - well, Jan is my wife. In the priority list of life that is important.

    I never managed to buy the anonymous song "****** it, I'm off", but I'm sure the lyrics would not have appealed.....:)
     
  5. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Nada,
    Sounds interesting; will read it! Thanks.
     
  6. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    Hello Angela
    My husband was diagnosed last November at 59 with AD and frontal lobe demetia. He has had the symptons for 5-6 years and was feeling useless,lazy and isolated because of not being able to cope. this was compounded by having to retire at 52 because his work was affected by the illness. Depression was always around for him. To make matters worse, his aunt had died 6 months before his diagnosis with AD too. Luckily he didn't fully understand the diagnosis as his reasoning etc has deterorated quite early on. He was glad to be told he had AD as he had a reason for all his mistakes /memory loss. It helped him not to feel to anxious when he finds something else he can,t remember how to do. We discuss the illness when he wants but I'm economical with the truth when he asks about the future.
    As you can see from the replies, it's a very careful path to tread and only you as the care knows how to respond. When it 's early onset,it's difficult to stop the person thinking life has come to an end. It takes tremendous resources from the carer to keep them positive so look after yourself .
    Best wishes
    Susie
     
  7. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Dear Susie,
    Your thoughtful reply confirms that having a diagnosis of AD is both painful and comforting, and maybe the disease itself helps to cushion the sharpest twist. By the time you get a diagnosis, you are not so likely to be too aware of all the implications. But dealing with the future must be the hardest bit - hardest for the carer, certainly.
    Thanks.
     
  8. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    knowing the diagnosis

    Brucie I am glad that your wife didn't know the diagnosis (even if she guessed) – believe me it is very difficult when the person you care for does! My hubby knows it all as the specialist has involved him totally from day one although I must admit that I have now taken to dwelling on certain bits of what was said rather than others! I just have to do my best and hope it helps him. Thank you for all your entries on the forum - now I have managed to get it working again I find it amazingly helpful to read all the entries – I suppose it is a feeling that people who really know what it is like are willing to support each other and help each other along – so BIG THANKS

    egg
     
  9. Margarhett

    Margarhett Registered User

    Apr 30, 2004
    22
    Manchester
    My husband was told that he has frontal lobe dementia at the hospital. He accepted it and now that he is home is coping well. I would not have wanted him to know if he had AD. I think it could be cruel to tell someone they have that.
     
  10. PeterG

    PeterG Registered User

    Oct 17, 2003
    25
    Hertfordshire, UK
    I kept the initial diagnosis from Jen for 6 months, 3 years or so ago, but after a week in the National Hospital For Neurology in Queen Square, London, at the end the doctor mentioned to Jen they were looking for the Alzheimer's gene. She took this very badly & cried for a couple of days.
    Now we call the condition an illness, a cognitive disorder that stops her brain cells from connecting, because some of them get covered in "gunge". Jen seems to accept this explanation, although from time to time the "A" word is mentioned. I just remind her that she's OK as long as she takes the tablets, although I know this is not really true. But it gets us from day to day.
    The hardest part is when she tells me, "I'm OK now, when will I get the all clear?" So, I just remind her that she's not cured but the tablets will keep her going & who knows, a new treatment maybe coming in the future.
    I guess we all just deal with our own situations in our own way. Maintaing Jen's quality of life is my no. 1 priority now.
     
  11. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    the "A" word

    I wish we could eradicate the fear and stigma that seems to surround the word Alzheimer's! Is it any worse than the C word? I found that I needed some way to explain to other people (in restaurants, hotels, the taxi driver, whoever) why they needed to take special care, and so I used to say 'my father has Alzheimer's'.
    I think if we can get used to using it in everyday life, perhaps those who have dementia won't feel it is such a hopeless diagnosis. There are treatmentswhich ameliorate it for some people, and we can be geniunely hopeful that better ones will be found. I like Peter's description and it seems that having a description like that is more helpful to his wife than a frightening name. But I wish we could remove the dread.
     
  12. PeterG

    PeterG Registered User

    Oct 17, 2003
    25
    Hertfordshire, UK
    Angela, thanks for your comments. I should just add that I use the "A" word all the time when explaining to anyone else what is wrong with Jen, but I do try not to say it too often in front of Jen.
    Responses are normally eyes wide open, one step back, try & change the subject! But I have found its better to be open & upfront with people ratherr than skirt around the issue.
    How other people respond is up to them. Our good friends are not afraid to talk about Alzheimer's, in fact it gets a bit wearing with one sister who constantly scours the tabloids for "cures", but of course I say I'm grateful for the information.
    Irritants? People who say things like, "We all forget things, its just her age, why only last week I forgot . . ."
     
  13. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Irritants

    Peter, your last sentence is the problem for me: honest and upfront is my policy, too, and that's ok with friends and acquaintances who have an understanding of AD.
    Unfortunately, though, the majority of people assume that Alzheimer's is equal to forgetfulness. My worst nightmare is having to deal with people, who are trying to hurry my husband along - it can take ages for him to work out how to sit in a chair, worse still a seat on public transport etc., or follow instructions, especially if they contain the word or message 'quickly' ..... I am yet to find a brief and concise explanation for such situations, which would not hurt my husband if he were to hear it.
    Any suggestions?
    Carmen
     
  14. PeterG

    PeterG Registered User

    Oct 17, 2003
    25
    Hertfordshire, UK
    Irritants

    Carmen, the times this used to happen to us when we were out was when Jen decided she wanted to buy something & use her card to pay. Problem is she mostly can't sign her name, at least, on good days, without a lot of hovering over the paper & eventually doing it one letter at a time, or just a scrawl after the initial letter.
    So, now we just sort of agree, without actually saying it, that its best if I do the paying - Jen can't deal with cash any more, unless its a £20 note & she gets change.
    I really don't know what's best to say to people in the cases you describe, Jen sort of accepts the cognitive disorder words, although sometimes she asks me what cognitive means! So, next time it happens to us out together I'll try the CD phrase, though maybe other people would also not understand.
    Anyway, maybe these irritants are the least of our worries, when I've explained for the 5th time this evening that she's not cured but is doing OK on the pills! You know, when she tells me she's cured, its really a question & her face lights up in a big smile. How am I supposed to dash this hope with reality. I just can't, so I take the "easy" option, just take the pills, the doctors are working on other treatments, its not really getting any worse, & so on & on.
    Feel a bit fed up now so will plug the headphones in & listen to some music for while.
    Best wishes
     
  15. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    97
    halifax
    Hi Peter

    You sound like a lovely husband who cares for his wife dearly and will do anything to protect her from the ravages of this dreadful disease. I personally think Alzheimers sound a lot more acceptable word than dementia as this word fills me with dread and it makes me cringe when anyone mentions it. I suppose we are lucky in the fact that when the doctor tells my 78 mother in law that she has Alzheimers she nods her head and you can see he could be telling her shes living on the moon for what reference it has to her. I don't think there is a stigma to the word as unless you have come across someone who has Alzheimers there is a lot of people who don't even know what it is but dementia is a word people associate with mad people. I can understand how your wife feels though especially if she is in the early stages of the illness but you are right to reassure her that although it isnt yet curable it is managable and who knows whats round the next corner, scientists are working all the time on a cure and rest assured one day they will find it and whilst her illness is managable there is always hope!
    keep up the good work.

    janice
     
  16. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    what's in a name?

    Hi Peter and Janice,
    it seems we are all caught up with the problem of whether it matters what we call it, and who it matters to. I have a friend who has cerebral palsy - remember when we used to call them spastics? The Spastics Society changed its name to Scope to get away from that tag. And her difficulties - wobbly walk, shaky hands, taking a long time to sign a cheque and her signature looking strange - are so similar to the problems that you've described. But we just say "my friend has cerebral palsy, you'll have to wait for her.."
    I agree that 'dementia' has resonances of 'demented', and sounds quite frightening to some people. Educating the outside world is important, and having a label that is acceptable to sufferers is also vital. I hope that we can turn Alheimers into a better-understood, less frightening label, eventually.
     

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