My husband was diagnosed yesterday with Alzheimer's

Discussion in 'I have a partner with dementia' started by Jean1234, Sep 15, 2015.

  1. Vaso

    Vaso Registered User

    May 10, 2015
    4
    Hello Jean at last there is someone out there who has a husband with dementia, it's usually a parent. My husband was diagnosed with mixed dementia in February and l cried every day for 5 months, even now l sometimes go in the bathroom behind his back and cry. I know exactly how you are feeling and what you are going through. Vado
     
  2. Vaso

    Vaso Registered User

    May 10, 2015
    4
    Vaso

    Hello Jean1234 l sent you a message but l think l did it wrong so I'm sending you another one. My name is Vaso and my husband was diagnosed with mixed dementia in February this year, l cried every day in the bathroom for over 5 months and even now l still go in the bathroom and cry most days so l know exactly what you are going through and how you are feeling. This is the first time l have found someone who has a husband with dementia as it always seems to be a parent. I hope we will keep in touch. Thinking about you Vaso
     
  3. hodge

    hodge Registered User

    Feb 26, 2013
    22
    walsall
    bombshell

    I know that feeling only too well, the "bombshell" that drops on you when you hear those awful words, having been through the changes in behaviour that prompt you to seek advice and then hear the diagnosis following the brain scan "Alzheimers related dementia". I will never forget the words on that awful day when my husband and I were told that he had Alzheimers. I drove home from the Memory Clinic in a daze and just wanted to go into a room and scream and cry, but then I had to think of him and how he was feeling, and I had to bury my feelings until I was alone, and then I went out of the house, drove to a garden centre car park, parked in a corner and just sobbed and sobbed for goodness knows how long until I drove home exhausted. Having no family made it worse, no one to share it with, no emotional support, just me. That was three years ago, and things are pretty much the same. I have been to my GP so many times only to be asked if I would like anti depressants to help me cope better. No, it is counselling I need, emotional support, but in the words of my GP who said "there doesn't seem to be an awful lot out there". People have told me I am strong and coping well, but they don't see me standing at the kitchen sink looking out of the window with tears streaming down my face dreading the future and how bad things will become and wandering how I will cope, because I feel so alone. I have other things to worry about apart from the every day challenges, my other OH has flatly refused POA because he is in denial and I worry sick about our financial future. I really don't understand how people who cope with this cruel and dreadful disease can be so upbeat because my world is totally upside down, I am bereft, as my husband has been my only friend and companion for 28 years and I am slowly losing him, and therefore my world. I am so sorry for those of you who will read this and feel any more depressed than you were already.
     
  4. Bronzestraw

    Bronzestraw Registered User

    Jan 5, 2015
    5
    Nottingham
    Photobooks?

    Sorry Jean I've only just picked up your original message. Commiserations but life is not over yet, it may be a long but for the most part manageable road. My wife is a fellow sufferer, we have no children to fall back on and hopefully have no intention of her ending up in some sort of Home or other.
    I don't know how much you are up to speed with computers but when you have a few minutes you might consider making up a photobook for your husband. I am plagued with "Who's that?" etc; so what I've done is make up a photobook on line starting with photos of his parents, adding dates/place of birth, death etc, then siblings, children, grandchildren, friends, pictures and a very brief commentary of various notable events throughout married life all accompanied by photos taken over the years. You decide how many pics on each page, how big or small they are, what you want to write, what font and size; you are in complete control.
    The end result is a printed A4 book personalized for your husband which looks very professional. Just leave it on the coffee table and when questions pop up go to the book. I've already done some for friends and they've gone down very well. As far as my wife's concerned it's a memory book as well as an aide memoir that she's never seen before, even though she sees it every day and flicking through it gives her a tremendous amount of pleasure. Usually I get them done for about £30 for 60 pages (they are always doing offers) but in terms of the pleasure it gives to the sufferer I find them priceless.I'm not trying to sell anything but he site I use is photobox.co.uk.
    Best wishes on your journey. Sometimes there are good days.
     
  5. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Welcome .....

    Dear Jean, welcome to a 'club' nobody really aspires to belong to!
    Pop in as often as you wish, talk to us, ask any questions, rant and rave, it is good for the soul. There is almost always someone here with an answer, a solution, a tip - or at least with a shoulder to cry on or a pat on the back.
    The important thing is that you are not alone, too many people have been there and got the T-shirt, and with all that virtual support you will find strengths you never knew you had.
    You may have to learn to see the world through your husband's eyes. No more right or wrong, just a case of weighing up what he needs to feel calm and comforted, even if that might, at some point, include little white lies.
    I read everything I could get my hands on ("Learning to Speak Alzheimer's" by Joanne Koenig-Coste was very helpful), and in hindsight I can say that Talking Point was the single most important resource I had to see me through those often rather dark and scary days. And Music!! Use it to distract from awkward situations, and to lift your mood - both his and yours.
    Best wishes! C.
     
  6. Peirre

    Peirre Registered User

    Aug 26, 2015
    160
    You will learn so much by attending a few sessions at a memory café, the information you`ll learn from speaking to others could answer many minor questions you may be asking yourself. It will also put you in contact with members of AS staff who will chat to you and discuss what help they can give.
    The learning curve your facing may seem so steep that it seems to be going into loop the loop & you may feel your about to explode with frustration & anger. But with help from the AS things will start to ease.
     
  7. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,615
    south-east London
    Hi Jean,
    As you will have noticed by now you are not alone in these difficult times and nor will you be. My husband was diagnosed just over three years ago and I remember that day as if it was yesterday.
    TP has been the most supportive and knowledgeable forum I could ever have hoped to have come across and without the understanding, expertise and friendship I have found here I don't know how I would have coped with things at times.
    Having said that this is a gradual disease, there will be many opportunities to enjoy yourselves - life doesn't have to change at the point of diagnosis.
    My advice - look for the laughter and take enjoyment from the good times (there will still be many). Concentrate on what can be done rather than what can't - and most of all please keep posting here and never feel that you have nowhere to turn :)
     
  8. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    91
    Jean I experienced the same feelings ealier this year. My husband was diagnosed with mixed dementia late in 2013 but before I could really come to terms with it. He was diagnosed with a heart condition and also cancer of the colon. Within 3 months of that happening our son was taken seriously ill too. So most of last year was just a whirlwind of hospital appointments and visiting.

    So it was only earlier this year that my OH dementia really caught up with me. I spent time worrying about how I would cope, what would he be like , would I need to move etc etc.. I felt at the end of my tether with it all. After a few months of this I realised that we needed to enjoy everyday that we could so that's what we do now.

    Those feelings will pass, it may take time but don't let them ruin the good days that he still has left.
     
  9. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Hodge, I don't know what to say to help but didn't just want to pass by your post. I am assuming from your post that you can still leave your husband on his own? I would strongly recommend joining a local group, craft, art, photography, WI, U3A, anything that gets you out of the house and meeting other people so that you have something else to think about. With regard to POA I would suggest to your husband that you both get a POA in place, it only needs to be registered when things get worse. Perhaps see a solicitor who can explain the benefits to your husband, if you haven't got family you might need to name solicitor on yours. It is so important you get this in place for your husband by whatever means. Huge hug xxx


    Sent from my iPad using Talking Point
     
  10. Robertus

    Robertus Registered User

    Oct 28, 2013
    4
    It is very difficult when you first have the diagnosis of Alzheimers. My wife was diagnosed in 2012 and has slowly deteriorated over the years. We do have problems and I have to wash and shower her now and dress and undress her, but in many ways she still stays the same. There is difficulty in communication and I do have problems when we go out, she is inclined to try to rush off by herself at times. It is frustrating and has you on your toes continually. I do take her out as often as possible and we still go away on holidays. I try to treat her as normally as possible if I can. I think the idea of dealing with a Power of Attorney and a will is of paramount importance if this has not been dealt with. It gives peace of mind to yourself and your children. At the same time I dealt with my own P of Again to give my children peace of mind at what can be a dreadful time. Remember that the person signing the P of A must be able to satisfy the solicitor that they are mentally capable at the time of signing.
     
  11. hollysmum

    hollysmum Registered User

    Sep 13, 2010
    59
    Hello, Hodge - at least you now know you're not remotely alone, and that everyone on this Forum knows exactly what you mean about how you're feeling and your worries for the future. Receiving that diagnosis, even when you actually expect it, really is a bombshell. My mother was diagnosed in 2011, and whilst she retains her sense of humour and her comprehension of most things, her short term memory is diabolical, and she has become literally a shadow of her former self. However, this has not changed for four years now - her latest visit to the memory clinic for her annual review produced a report stating that there has been no significant deterioration, which is far better than my father, my sister and myself could have hoped for. Is your husband eligible to take any of the drugs which might delay the progression of AD? My mum takes Aricept, as she was diagnosed at a fairly early stage, so perhaps her lack of deterioration shows that these drugs can help. However upset/drained/worried you might feel at the moment, I know that you will cope - my father would not have anyone else looking after my mum, because he knows her best of all, and because he wants to do it. I don't doubt that this is how you feel about your husband. Call in all the help you can from your Council's adult services - you will find that he qualifies for quite a lot of things simply by virtue of his diagnosis. Ensure that you claim as many benefits as your husband is entitled to - the AS website is excellent for help in this regard. If it helps, my father never hesitates to take my mother anywhere (her mobility is not brilliant as she has osteoarthritis, and uses a wheelchair quite often), to meet people and enjoy herself. They play in a weekly pub quiz, and they volunteer at a local industrial museum three times a week, amongst other things. As a family, we've found that approaching the situation with a healthy sense of humour has helped enormously, because she's certainly not lost that ability! This past Sunday, I turned 50 and we all met up for a family meal. I asked her if she remembered how old I was, and she said, "25, isn't it?" which made my day in more ways than one!
     

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