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. ashtreex

    ashtreex New member

    Dec 16, 2018
    My husband is in fairly early stage Alzheimer's (he's recently had to give up driving) and I know I am still very lucky, but it is wearing being his virtually only companion. I used to be able to go away on my own for a night about once a week but I think that will have to stop soon, which will be a bit of a life saver gone. Not that he's that mental yet, well, you know, we can still have a fairly normal conversation, but quite dependent. I succeed in finding quite a lot of things to go and see and do, even capture some friends to come and visit or do things with (hope they aren;t put off!) but always with me. I read and hear about support groups etc but it seems mostly the beneficiary gets accompanied to them by their companion, so one doesn't get any time off.

    We do have children, our son lives not far away but he has 2 small children. He can call in during the day from time to time. Our daughter lives a logn way away, she can't help a lot. And I don't want their lives to be too affected.

    My husband is "high functioning" as it seems to be called, he's an ex academic and he's never been at all patient with most people. Perhaps the heart of the issue is that I can't really expect groups of 'normal' people to assimilate him, at least without me along, and I;m not sure he would accept companionship of others similarly affected. So potentially all good fun for him but only a warm feeling for me that I've found some entertainment.

    I read all the advice about being patient with the sufferer and I certainly do my best but the thread about how to deal with unkind remarks certainly resonated. When I read about coping strategies and all the ways one should behave I just feel that the carer's place is in the wrong. I just feel I'm gradually being sucked into that role with no space left for me.
  2. Lawson58

    Lawson58 Registered User

    Nobody ever asks you to make a decision or a choice about being a carer. You are a wife and it is assumed that you will do whatever is necessary to look after health of your husband. It all just sort of sneaks up on you, little by little and eventually it seems that dementia steals everything that is you and from you no matter how much you fight against it.

    My husband was diagnosed officially with Alzheimer's five years ago on 8th July but like yours he is still high functioning and is still playing bridge several days a week. And it bugs me that apart from his heart issues, he has been having quite a nice time while I do everything else, in spite of his Alzheimer's. I know that doesn't apply to many on TP but that's how things are with us.

    He even gets away for a weekend once in a while to play bridge which though not without its hiccups makes him happy. My GP. and my husband's geriatrician both acknowledge that he seems quite happy so all I have to do is keep on with caring for him as I have which kind of makes him the important one in all this craziness.

    I can't say that I looking forward to the future with any enthusiasm. He is declining slowly with both his Alzheimer's and his heart so I plug along trying to keep my heart and soul in a sane state.

    I don't have any advice for you, just a lot of sympathy.
  3. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    My husband is the same too! High functioning ex academic despite being diagnosed with Alzheimer’s 5 years ago. He goes out on his own (not often though, his choice) to go shopping or walk the dog and if I’ve told any of our acquaintances of his situation the reply is always, ‘I would never have known, he seems perfectly fine’.

    He can be when out. Apart from the odd time he throws a temper outburst. His moods at home and my often having to be very careful of giving the wrong reply to avoid making him angry or trying to explain something in simple terms because he can’t quite grasp it - these are the sort of things which aren’t seen by others. Nor are the unkind ‘joking’ remarks and innuendoes which he thinks are ok and which I find either embarrassing or upsetting.

    He has mild heart issues too. I don’t feel as if I’m actually ‘caring’ for him in the sense that some others on here are with their dementia person. How I do feel is that I’m ...I don’t know...constantly trying to avoid annoying him, gritting my teeth while he harps on and on about one of his obsessions of the moment. Thinking carefully before I mention this or that. Thinking that this isn’t the same person I married. He is and yet....the relationship has subtly changed. I do know how you feel, ashtree and Lawson.
  4. ashtreex

    ashtreex New member

    Dec 16, 2018
  5. ashtreex

    ashtreex New member

    Dec 16, 2018
  6. ashtreex

    ashtreex New member

    Dec 16, 2018
    Thanks Lawson58, so glad to hear from you. I was feeling quite a fraud when I read about the appalling time others are having - and that presumably awaits us. Mine is deteriorating faster than yours I think. It’s a terrible thing to say but that’s not all bad. He certainly couldn’t play bridge. I totally know how you feel.

    So your husband is quite sociable still? Do you think that helps? A problem I have is that mine is not, so I’m pretty much his only constant company, although he has a close friend and fellow academic in Italy who visits London for a week or so from time to time, which is just great, such a help. I suppose you don’t live in London?
  7. ashtreex

    ashtreex New member

    Dec 16, 2018
  8. ashtreex

    ashtreex New member

    Dec 16, 2018
    And similarly warm thanks Hillyjay. It’s really good to hear from others dealing with early stages. We have challenges of our own.

    My husband was only diagnosed finally this spring but he’s already deteriorating. Just as you say, they are more or less subtly different people. I would find it really really hard to cope with what you have. With me it’s endless searching for things that are missing, and failure to understand simple statements, and particularly plans ahead. Constantly being interrupted to think about this or that, or summoned to help. On eggshells not to hurt his feelings or contradict him while stuff mine, he can say what he wants. And heaven help me if we have to think about packing for two events not far apart!

    At the same time as being very gradually sucked under myself, I feel sad and sorry for him, what would I feel if I had that ahead of me? We can sometimes have a nice time together if we go out somewhere. I feel he’s gradually sliding backwards into childhood again.

    I’ve been a bit cheered up by thinking I’m the CEO of the household not just the housekeeper! thanks to my daughter, that’s what she says she is with 2 young children.
  9. Lawson58

    Lawson58 Registered User

    He tries to converse but he often tells stories everyone has heard a thousand time before and the stories are so well rehearsed from all the telling that he doesn't have to think about them. He finds it hard to follow more free flowing conversations and gets pretty muddled. My children sometimes give me amused looks and try to change the subject to help him get out of deep water.

    The thing about his bridge is that he has played cards from childhood so it is been a blessing for him really.
    Bridge is not a very social game. To chatter during a game is a definite no no . He went away for a weekend to play bridge but his friend is definitely weird so I would love to be a fly on the wall when they talk.

    He is starting to forget things short term a lot in more recent times but his biggest problem has been his long term memory, not being able to recall the first twenty or so years of his life and other events over the years. He can be quite paranoid at times and totally lacks any empathy for other people.

    And we live in Australia! But I lived in UK for a number of years and know London well.
  10. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    #10 hillyjay, Jul 5, 2019
    Last edited: Jul 5, 2019
    hi @ashtreex, your words could have been written about my husband. The searching for ‘missing’ things, not understanding simple things (sometimes), and those constant interruptions, all of those. On his bad days. He too has good days when it’s almost as it was, when we can go out and enjoy our time. Those times lull you into a sense of false security and then when there’s a sudden change of mood, an outburst of temper or a panic because he’s ‘lost’ something, you’re forcibly reminded that things HAVE changed.

    The interruptions. He has to tell me whatever it is NOW (because he’d forget otherwise), he needs to ask me something, it has to be NOW. He’s always coming up with things that need doing or seeing to or calling someone in to do. He says ‘we’ but in fact I know it will be me who has to organise it if, that is, he doesn’t go on to some new problem he’s found and obsess about that instead.

    I’m not sure if he would be able to play bridge as your OH does, @Lawson58 (I’m not altogether sure if he knew how to anyway) but he’s sometimes able to do calculations as he used to and at other times he can’t work out a calculation which even I could do in my head.

    I feel as if at times I’m dealing with a schoolchild again with the pacifying and having to simplify my explanations.

    Short term memory is getting worse again and long term is a bit off kilter too. @Lawson58 are the first 20 years a total blank for your husband?
  11. Cariad 42

    Cariad 42 New member

    Dec 18, 2018
    Can I add that this is us as well. My husband was diagnosed just over a year ago, and whilst I've tried to keep everything "normal" the responsibility/extra thinking that is needed is very tiring.

    We lose things all the time, generally around the house. I sometimes say where the item is and he goes to look for it but can't see it,even though it's right in front of him - it's although his eyes and brain can't work out its actually there.

    In the last few weeks he has lost two pairs of glasses (outside of the house) so I'm now looking for cheaper replacements as I think this will happen again. We've done the glasses on the chain thing, but that didn't work. We've also tried the man bag option- to help him put his glasses/wallet/keys in the same place but that failed.

    I can feel myself beginning to lose confidence to do things and I know I need to fight this, because we can't give into this, at least not yet.

    Like others I feel guilty complaining at this early stage of what is yet to come.
  12. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    This sounds like my OH only he is worse now. He can’t remember what we did this morning. He never goes out alone now. We do go out walking with groups for about one hour but this is getting too difficult as he is almost falling down after about half an hour now! He doesn’t like me going without him and accuses me of having affairs with all the men that go! I have to take him everywhere with me I have no life of my own. If I do go out occasionally for a meal with friends he is awful to me accusing me of all sorts.

    He does sleep a lot more now but I feel even more trapped as I have no help and he won’t accept any help as he thinks there is nothing wrong with him!

    The last time we went on holiday for a weekend he went to bed at 8 pm so I had to go with him as he wouldn’t be able to find the bathroom when he has been asleep. I feel holidays now are just a waste of money as he is too confused as to where he is.
  13. Champers

    Champers Registered User

    Jan 3, 2019
    As well as my MIL issues - another story, another thread - my mother is being trying too.

    She has meals on wheels, fresh extras delivered by the milkman and an occasional supermarket delivery organised by me. As I live 2 hours away, it’s the most practical solution and I know Sainsbury’s delivered today - I always ring her an hour before incase she sends the order away!

    Mother rang this afternoon demanding that I take her shopping “as I haven’t got a thing in the house.” It’s so frustrating as we then had this meaningless round and round discussion about how if she checked in her fridge and cupboards she would see she had plenty of food. She then proceeded to tell me everything she had, so I made the mistake of telling her that was great - therefore, she didn’t need to go shopping. Plus, because of the distance away, it was unnecessary.

    She rounded on me in the most awful way. I was accused of being the most selfish daughter and how she was wished she’d never bothered asking me. How disgusted my late father would be to see how I treated her and if her own only daughter won’t help, what was she supposed to do? It’s very sad because I’ve never ever had a good relationship with my mother, even before she became an Alzheimer’s sufferer, although outwardly very charming has always thrown tantrums throughout her life if she didn’t get her own way.

    But I could weep. I’ve got the SW battle with MIL on one hand and on the other, my own mother ringing me up about non existent burglars, missing handbags that aren’t missing, shopping that isn’t needed and when I’m trying to keep her as independent as possible, accusations of selfishness on my part.
  14. Thethirdmrsc

    Thethirdmrsc Registered User

    Apr 4, 2018
    This is me and my OH as well. He looks well, still washes, but would wear the same stained t shirt and jeans, if I didn’t take them off him, and he used to be so fastidious. He doesn’t have any hobbies, as all he did was work, so he relies on me to be his constant companion, which is hard going.

    He has occasional sundowning episodes, and can’t remember events, or where I am. I still work 2 days a week, really just to get out, and it’s only 3 miles away. But I leave him a note of when I will be home.
    Sometimes he waits for me at the window with his coat on.
    He gets depressed and frustrated not being able to remember how to do things, and constantly put things down, and forgets them.

    I would not go away on holiday to a hotel, as the last time, before he was diagnosed, he went out of the room to look for the loo, naked. And we had an en suite room. I didn’t wake up, and didn’t know till he told me the next morning. I thought he was winding me up until the owner told me, luckily he laughed!

    Difficult to know what the future holds
  15. Lawson58

    Lawson58 Registered User

    He doesn't seem to remember much at all of his early life. Most people at times tell children/grandchildren stories of when they were growing up, the naughty things they did, what an ice cream cost compared to now but he never does. Once he asked me if I could recall my childhood home which I can and he told me then that he has no idea of what his home was like. He doesn't even talk about his children when they were little.

    He worked in many different countries and he knows which ones he lived in but gets confused over when he was in the various places. It was a nightmare completing his application for a permanent visa here in Australia because they required all these details. One of the first red flags of dementia, now I look back at it.

    My husband is still very good at mathematical things. He came from a family of bookmakers and was working with numbers from when he was a lad. Card games have a strong element of maths in them so I think it's connected to his ability to still play bridge.

    I was a teacher for many years and I use strategies for managing children with my husband. Mostly, it works but we have our bad times too. Sadly they are increasing in number in the last few months.
  16. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    How strange you should mention that, @Lawson58. My husband lived in the same childhood home until he left to go to college. I discovered the other day that while I can remember the house I grew up in exactly, he says he can’t quite remember his. He asked me if I knew where the stairs were in his house, to the right or left of the door and a couple of other things.

    Again we have a similar scenario over what happened where. He knows that we/he lived in X or Y but has difficulty recalling when that might have been and mixes them up. Some places he’s visited (as a teacher) with groups of students from his school he is now convinced that he and I visited them together. I used to say no we didn’t, but I’ve learnt to do that muttering vague agreement now. Yes, child management experience comes in handy at times!

    We’ve visited Australia several times to visit family there and while he remembers we went, the details of exactly when we went and where we visited are going. Our bad times have been increasing over the last year too and I suppose that it’s progression which the Memantine and Rivastigmine have masked.
  17. Lawson58

    Lawson58 Registered User

    I think this childhood home thing has been a watermark moment for me, highlighting how much we and the experts don't really know yet about dementia and just what a strange creature memory is.

    Two years ago my son and granddaughter were in Queensland with me and I took them to see the home I grew up in. I had told them that there had been palm trees outside the windows that would rattle during the night and in my imagination, it was a monster and the noise frightened the daylights out of me. So we drove up and parked opposite the house and the first thing my granddaughter noticed were the palm trees still growing there, outside what had been my bedroom window.,,

    I can remember the mango tree where I used to hide till the mosquitos got the better of me and having to chase the chooks out of the mulberry tree when the fruit was ripening. We lived on a hill so we had a billy cart, great fun except that there was a tram line at the bottom so you had to do a very impressive turn at the bottom so we didn't run into the trams.

    There's none of this sort of stuff from him and I know that he went to grammar school but nothing else I
    I can remember the schools I went to and who my teachers were but this has all disappeared for my husband.

    When he talks about his dad, it's always to do with how he died but I have no understanding of what the man was like. And when he talks about his mother, it is all to do with her having Alzheimer's, not how she was as a mum, what she liked to do. I have no idea of what they were like as human beings.

    I am quite convinced that this definitely tied up in dementia in some form but mostly it is quite different to how other PWD behave.
    Maybe that's why my husband has been classified as having a 'nonclassical' form of the dementia!
  18. canary

    canary Registered User

    Feb 25, 2014
    South coast
    @Lawson58 - this is exactly the sort of memory loss that my OH has. I keep telling the doctors that its not his short term memory thats the problem - its his long term memory and the older the memory the less he can remember it.

    No-one is listening to me though, they tell him three things to remember and lo and behold he can! He can remember what day/month/season/year it is, who the Prime Minister is and all the rest, so that they conclude that he has no trouble with his memory. Then 2 days later he has no recollection of having gone to the hospital.
  19. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    SNAP - to all this - 'high functioning' etc - except that we are several years further along to you - to the point where my husband has just moved into a specialist care home.

    All I would say is that it is crucial you get and keep time to yourself . I did it by using his income to employ companions who would share his interests with him for at first a few hours a week but this steadily increased. I did not use the agencies who charge exhorbitant sums for short visits for personal care, but employed companions for several hours at a time, direct, with the help of a not-for-profit agency who did the paperwork for a reasonable fee.

    I also went on working - even though I cut down to part-time eventually, - so that while his pension and PIP was spent on care, I looked after all the other expenses. If I had not engineered all this I would be insane by now. Family took years to get to grips with it all themselves and also live too far away to be able to help.
  20. Lawson58

    Lawson58 Registered User

    And my husband always performs well on the MMSE test and another one that they do but it was the investigation done by the neuropsychologist that revealed the gaps in his cognitive functioning. Three years later when they redid the tests, the gaps had grown and my husband vowed that they were so awful that he would never do them again. Obviously he had struggled and was aware that he had not done well. She diagnosed him as having 'non amnesiac' Alzheimer's but his geriatrician calls it non classical. Take your pick!

    Fortunately, I do have the opportunity to chat with the geriatrician on my own and I don't have the same problem that you do. We have been seeing him for over five years so our relationship is very cooperative which is helpful. He is probably going to increase the dosage of the rivastigmine patches at his next review in December. And because he functions reasonably well when with others (till he gets tired) people have no idea of how difficult things can be when you have to live with it 24/7.

    I do believe that 'high functioning ' is still fairly superficial, and I think my husband has been hard wired about his bridge and anything mathematical. They are quite complex tasks but anything else that requires problem solving or slightly complicated processes and his issues become obvious.

    We have had both our GP and cardiologist for 12 years and our geriatrician for almost 6 and I think this sort of continuity of care has been wonderful.

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