1. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    My husband always watched the tennis final but wasn’t interested this year. I watched it with him but he kept telling me to turn it off! I didn’t as I wanted to see who won! He loved cricket aswell but wasn’t interested in that either. He hardly reads the paper anymore now and he used to buy one every morning! He’s not interested in anything anymore we have nothing to talk about it’s such a lonely life.
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    My brother is staying for a couple of days again, and he is a tremendous support and so kind to my husband whom he always looked up to. It is 5 months since his last stay, and he is very shocked by the serious decline in him since then. Your description fits my OH @Guzelle and this aspect has upset my brother very much, this inability to do all those things which they used to enjoy together, such as discussing the cricket and golf. He is urging me to take care of myself and he is right but not for the reason he thinks, but because I need to stay well to look after my husband. Our lives are over as we knew them, I feel that very strongly and I must keep him at home as long as he is still able to be there. I just hope my health will hold out.
     
  3. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    It’s often someone else who notices how much worse they are. My niece who we see every few months often says he is nit as good as last time she saw him. But my sister noticed after not seeing him for a week! I knew he wasn’t himself but he’s been like it for 2 weeks now. With memory worse and more unsteady on his feet and not able to walk far without feeling tired.
     
  4. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    653
    Female
    New South Wales Australia
    Well thank heavens for friends on TP . We are all a bit crazy .
    A geriatrician said to me last week “what is your line in the sand? When you would consider a care home “

    I didn’t answer but sometimes I think some of you good people have passed “my line in the sand”. I do love my husband but if he became someone I didn’t know, if he was agressive and unthankful - I would think about other solutions.
    As it is he does say thanks and although totally unhelpful and totally dependant he is generally content and gentle.
    I just so hate the sundowning !! MJxxx
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    My husband is exactly the same, @Mudgee Joy in fact he is still calling me ‘treasure’, which absolutely guts me because I don’t deserve it. He is SO dependent that he asks permission to do everything, and I mean everything, and I find that upsetting. The very lack of helpfulness and the dependence you describe is the same here, as is his sweet disposition. I feel like a complete heel as I give him instructions to virtually stand up and sit down. Yesterday was a bad day after my brother left because I think it disoriented him and he seemed worse than usual, so I left him to get on with his breakfast. He had managed to get a cup of tea and bread and cheese while I went for a long walk. I felt very close to breakdown but funnily enough my brother rang me and I manned up. I was much better when I got home and he was quite sweet and safe. Like you, it’s the evening shenanigans that take me all my time to remain calm with and I am finding it difficult to be kind and considerate all the time, it goes in fits and starts. He is still not in need of continuous care and it would break him to go permanently. It’s the continuous change of tactics that are difficult to deal with because I cannot plan ahead at all because I can’t foresee how he is going to be, so I am having to constantly readjust my thinking.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    I suppose we could all have it worse @Grahamstown and @Mudgee Joy Dad is so polite and compliant with practically everything. He always says thank you and asks how everyone is, he is very kind hearted as well.

    Line in the sand, well I have always said incontinence but who knows. Dad has always been so clean and tidy but now he wouldn't change his clothes if I didn't make sure that he does. He spends most of the day combing his hair and frequently shaves but I don't think his quick wash is really sufficient.

    I get very fed up with it all at times and just have to remind myself that he can't help himself and it's just the way things are but I still feel guilty. I have thought about homes and even looked at some but I don't know if I could actually put dad in one, he is not that bad yet. Perhaps if he has another illness or incident but he has recovered so well since his hospital stay earlier this year that I just don't know.
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    He sounds like such a lovely man @Duggies-girl and yes we are lucky to have a kind person to care for. I have had a better day and been much more patient, although he hasn’t been up that much. I got him to go for a walk this afternoon and he did enjoy it to a certain extent, although it exhausts him. He has enjoyed watching the moon landing tv programmes.
     
  8. Justmary

    Justmary Registered User

    Jul 12, 2018
    45
    Female
    West Midlands
    I know how you feel Guzelle, it's the same here. Last year I could go out on my own during quite a few sporting events. Now nothing holds his interest for very long. No books, newspapers, films, nothing.
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    This inability to concentrate on anything is so distressing to us who remember the time before the disease struck. My husband is unable to do anything other than doze or watch me and asking what I am doing. He can’t watch anything for long on tv. It’s so upsetting but I am getting more used to it. He doesn’t want to eat now either, I have more or less had to instruct him to eat every mouthful today. Hey ho!
     
  10. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    My OH is not eating as much he doesn’t seem to have much appetite lately, he does like trifle, ice cream and biscuits but not much else. He can’t walk far without getting tired which has got worse in the last 3 weeks. His memory is so much worse aswell as finding words.
     
  11. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    Hi Grahamstown,

    I am in much the same boat here. Took OH to local festival, but the huffing, puffing and holding onto walls on the shortish walk to and from station was hard to take. Of course within two minutes of getting home he was off wandering from room to room. Not sure how much he enjoyed festival, son and grandchildren were there but at least I got to see some family. My son posted some photos of the event today. OH could not recognise anyone even himself.

    Sitting here wondering what does he enjoy? Seems most interested and content when I am driving him somewhere. However, I dislike driving and would never do it for pleasure.

    Could not muster the energy to go anywhere today so feeling guilty as he follows me about. On the food front OH eats all of one food, then the next, leaving the protein until last. Try telling myself it does not matter as I scrape the most expensive part of meal into bin.

    Really feeling the pressure of many years of caring and have upped day centre to three days in an attempt to stave off choosing nursing home. I think life seems more difficult at this time of year when everyone else is going off on holiday etc. Personally, I feel so left out. (Anyone who did Sociology will know of Durkheim's findings).
     
  12. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    Dad sleeps nearly all day. He gets up late, has breakfast and then goes to sleep in his chair. He is always surprised to see me wherever he wakes up and thinks that I have just arrived, in fact I have been here for days.

    If he does wake up he will get up and rearrange his ornaments then go back to sleep. He wakes up in the evening to watch TV but can't follow anything properly. I admit that I am happy to let him sleep because if he is in his chair then he can't fall over.

    Dad is very pleasant company when he is awake but it is very boring for me. We don't go out anymore because it is a struggle now.
     
  13. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    OH gets up had breakfast then falls asleep. He shouts at the TV boring and asks what is this ? I say it’s the news! He used to watch the news all the time now he can’t follow it! It’s hard seeing everyone going on holidays and I can’t. He follows me everywhere. I can’t go swimming, I can’t go to my exercise class it just gets worse every week he seems to be getting worse. He won’t accept any help he just wants me! It’s stifling! Some days I feel I cannot go on like this, I’m going to take him on the slow walk tomorrow. He doesn’t like me talking to people on the walk it just impossible to live like this!
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    The only consolation, if you can call it that, is the similarity between our loved ones, which at least tells us that this is how the disease works, that the breakdown in the nerve cells in their brains stops them being able to do all these things. It’s not anything that we are doing or not doing, it’s just the way it is. A common feature seems to be lack of the hunger impulse, not hungry, can’t eat and won’t eat much. Can’t concentrate, can’t remember anything, feel snoozy a lot of the time. Barely leaves the house now. In the meantime we who are looking after them, are virtually alone, left to try and carry on as best we can, occasionally bumping into something that reminds us of what has been lost. That happened to me the other day when I walked into a place that I hadn’t been to for some time, which was where we always went together, and I was overwhelmed by the enormity of what he has lost. It’s a bit like inoculation, now I shall be able to go again without bursting into tears. Goodnight dear TP friends.
     
  15. Justmary

    Justmary Registered User

    Jul 12, 2018
    45
    Female
    West Midlands
    My husband also enjoys being driven places, or going by train. He would probably be very happy going out all day every day. If only there was someone out there who would be willing to take him!
     
  16. AliceA

    AliceA Registered User

    May 27, 2016
    2,232
    Xxx know how you feel, I realised the other day I shall probably never see the sea again. We do not travel at all. Even a trip to bank was too much. Xxx
     
  17. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Dear @Guzelle It sounds like you are at breaking point, as you say, you can’t go on like this and it is impossible to live like this. Is it time to consider residential care? You should not be condemned to a life of misery and isolation because your OH has dementia, no matter, I’m afraid, his stated preferences. You still have a life to live and need to be free to do so. Please talk to social services, explaining that you can’t manage anymore x
     
  18. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    Thanks I will. I know he won’t accept going in to a care home so I don’t know how to go about it. We did go in the slow walk today he didn’t want to and couldn’t understand why we had to go.

    When we arrived home he just went to sleep. He’s had a meal and gone back to sleep again! He’s only been awake for 4 hours today. He slept 12 hours last night and I had to wake him at 9 am this morning! He didn’t eat a lot either his appetite is not what it was!
     
  19. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    I hope you manage to get se rest while he sleeps x
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,245
    East of England
    Is anyone else trying to stop their PWD from wrapping up in bed as if it is still winter during the hot weather? This happened during the heatwave last summer and he is worse this year and I am dreading the rest of the week as he wraps up in duvet, neck blanket and dressing gown and no window open. He sweats badly and gets dehydrated as a result but I cannot stop him.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.