1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    Thinking of you so much especially because my husband is exactly the same in most ways. The only thing he does outside the house now is to very occasionally have a short stroll around the garden, or I take him to the barbers. He too is so thin, skin and bone but miraculously he doesn’t have any bed sores yet. Scrambled eggs are still ok, but he wouldn’t eat a whole one if I didn’t keep encouraging him. That’s the hardest thing, he looks at his plate and looks sad and says he can’t eat that, every single time. So the chat with the dietician was helpful because there isn’t much benefit in putting a plate in front of him, so drinks, finger food and little dishes of sweet things are the way to go. It’s just hard hitting these milestones of decline instead of enjoying a meal together. I think our daughter feels exactly the same as you do. She looked after him last Saturday and found the feeding very soul destroying. I am beginning to feel quite paralysed by this disease, and find it increasingly difficult to motivate myself to do anything. I do keep going though and still try to have a decent walk every day.
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,658
    I agree with the lack of motivation @Grahamstown I can't seem to be bothered to do anything most of the time. I started walking round dad's block every evening and then thought it would be a good idea to do a little jog so I ended up with a pulled muscle or something that took 3 weeks to heal and since then I have done nothing.

    Dad has not been out in his garden for ages, he rarely makes the kitchen nowadays and if he does, he does not seem to recognise his garden. I cut his hair last week because it is now a huge effort to get him out as he is too wobbly. Getting him over the doorstep is scary with his frame and he doesn't seem to remember how to get into the car properly, he tries to get in head first really awkwardly so I have reserved car journeys for appointments only.

    Yes soul destroying and thinking of you too.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,947
    It’s as if the coordination has just gone. Dad seems to have forgotten how to walk & feed himself!
    Mum is better first thing in the morning but she’s forgetting to shut the freezer door a lot ! So it’s now turned off!
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    Your father is just that bit worse than my husband. The effort to get him out is a big effort for me too and I dread it. We have a dental appointment in December and I am wondering what to do about it. I guess that I ought to try and take him but I am not sure. At least I sleep well otherwise I would be in really bad shape. Sleep well too (-:
     
  5. PalSal

    PalSal Registered User

    @ I am so with you on this. But the truth is I am a very harsh judge of my own behavior. The truth is most of the time I am compassionate and kind. It is that 5% of the time, when I am tired or impatient and overwhelmed that I remember and think about. I forget about all the daily kindnesses I do. The bathing, the feeding , the dressing, the organizing of activities. None of this would happen without my efforts.
    I am sure you are much more compassionate than you give yourself credit for.
    I think we need to remind ourselves each day what we do our partners not beat ourselves up for what we did wrong...Take care.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    Thank you for your kind words and as time has moved on I realise that. I think that as my husband gets worse I can be more patient. The dietician came yesterday and she said to him before she left that he was so fortunate to have me to look after him and he said oh yes I know, with feeling. I felt quite tearful and realised that in spite of my shortcomings I am looking after him as well as I can. After a torrid 18 months of steep decline, he is now in the doldrums. He is eating enough to sustain life and that’s about all so... I know that you have been caring for a long time and wonder if you feel numb at times. I have had a few days of this and have to make a huge effort to keep going at times. Take care too x
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    Yes, we are over judgemental of ourselves when we care. Yesterday a reliable carer came in so I took the opportunity to go and post a letter, someone crossed to road to see how I was and I just welled over.

    I was sharp with someone the other day, she meant well but she said something that indicted I should be more grateful for her help. We all have our trigger points. Her help meant I had to do something too, I was on the edge of exhaustion.

    I feel we either can become the victim of this illness or we find ways to compensate ( not the bottle :(:(:( As a bit self defeating in the long run! A glass perhaps? )
    I listened to a Gary Zukav talk saying the almost the same.
    I am concentrating on fitting in a bit more self care, I go to sleep after the evening carer leavers, so in the 12 hours of night I try to improve my sleep ratio. Rather like a young mum again! Not with the same supple body or energy though!
    I have a good cleaner/friend who is empathetic and gives a hug too! She stops me trying Quentin Crisps theory that dust gets so high then falls off!

    So a big hug to you all! What a learning curve we have been given!
     
  8. PalSal

    PalSal Registered User

    @Grahamstown Yes, I have been a carer for many years. And I go up and down...I get help often and choose to spend our money on his care so that I can leave him and go out and keep having a life. It means local activities and friends, not much travel as that is just too costly. Luckily, we were well traveled both in work and leisure...so it does not seem so bad. But I get resentful from time to time....but then I know it is time for me to plan a fun activity. I am one of the fortunate carers, as I really have created a system of support which has allowed my OH to sty at home..I have had years to work all this out, as he got worse and worse...that is not everyone's story. Some folks seem to have a faster on set. (but my OH was also on clinical trials where I feel slowed things down a bit) But it is difficult when I am ill, And I know that someday the time might come where he would need to go to a home. But for the moment it is one day at a time. Do something you really love if you are down....pay to get out of the house.
    It is the only way to do the long haul. And my two children support me in all my decisions and my son still comes every Sunday and stays a few hours, gets his dad supper puts him in his pjs and gives me the night off. I am truly blessed.


    .
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    This is the nub of it, and I have to count my blessings when I feel like this and learn to live a solo life, not one of our choosing because we would rather have our shared life together. However in the spirit of making the best of it, solo activities do have an up side. A friend and I had coffee together this morning and her husband joined us. My friends are a great comfort to me. I had to make a big effort to go, because of this paralysing feeling which I hope passes soon, but it was so worth while. While I have old age decline she has had a major problem with her daughter and granddaughters, which is far more serious and so I think we can cheer each other up from different perspectives.
     
  10. Linton

    Linton Registered User

    Jul 27, 2019
    128
    After hope... Despair... Got new meds from elderly mental health team after an horrible week last with hallucinations.. Way out of control and my OH greatly depressed.. Thought I saw a light at the end of tunnel.... Then found pills are making him like a zombie most of the day... Can hardly talk or walk and had a docs appointment for blood pressure and blood test today... To cap it all.. We have a lot of stone steps from our house and I fell putting some kitchen rubbish out... In the rain.. and banged my back on the edge of a stone step.. Shaken but in one piece I stumbled in in floods of tears... The dam burst... Going to get on again to social services to provide rails by the steps... Ans so it goes on... Stopping the pills see how we go.... Feeling a bit sorry for myself today.. Xxxx
     
  11. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,339
    Nottinghamshire
    @Linton

    I hope you haven’t hurt yourself too badly. It sounds as though you need a rail ASAP.

    with regards to the meds for your OH - go back to the doctor who prescribed it, there may be an alternative, or different dosage which would suit better.
     
  12. Linton

    Linton Registered User

    Jul 27, 2019
    128
    Thanks Bunpoots... Just sore this morning and whiplash... Going to change meds and waiting for a call back from social services...and moved bins closer to the house. Xxxxxx
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,947
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    After a two day visit from my brother who takes some of the heat from me, I am back on my own with this ..... man, moaning that his tea is too hot, doesn’t drink it and then it’s too cold. Everything is like this but he will drink the supplements one of which is concentrated high protein three times a day. His diet is awful now, basically anything sweet that he will eat and supplements. I lost my temper, fairly mildly but felt like screaming, and now he is sitting over his soup, eyes closed nodding off. Ooff how I hate it all.
     
  15. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,658
    @Grahamstown dad is basically surviving on runny scrambled egg fortified with double cream, soup fortified the same and some high calorie chocolate mousse and of course the drinks. Thankfully he doesn't complain other than everything is too big.

    I wonder how long this can go on, it's no life for dad or me. He sleeps probably 20 hours a day and just shuffles between his bedroom, the bathroom and his living room. He doesn't recognise his kitchen. They said he was dying 19 months ago (yes, I count the months) and another year is looming, it's all a bit depressing.

    I only shouted once when he nearly fell over while doing something daft, I felt so awful that I have not shouted since but it's hard sometimes. It's not surprising we hate it.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    I think I had a bad day today, better tomorrow I hope @Duggies-girl my dear man is just the same as your Dad. He is happy enough if all is calm and he gets his tea. It just gets to you sometimes and having people understand so well does help.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,947
    I know rationally that Dementia changes taste buds, so if only sweet tastes now register that means only sweet food is palatable.
    To be honest I now accept this, it’s part of the process. Like the tidal changes each day I cannot influence or change this path

    calorie intake is important perhaps it’s the body’s way of saying what it needs most!

    either way - if that makes meal times easier then that’s fine. Fruit fools are a compromise - a small percentage of fruit!
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    I wonder too how long it can go on. Fellow feeling does help as the endless days of decline continue. I have had to tell a colleague whom he doesn’t remember and who has been planning to visit for about a year but couldn’t because of illness, that she has left it too late. It has got to the point where I cannot see the purpose of anyone visiting unless they are very familiar.
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,464
    East of England
    Yes indeed, it’s sugar with everything now, well almost everything because he won’t have it in his beloved tea. It’s just another thing to adjust to, this totally counterintuitive way of feeding him.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,947
    my feelings towards what’s eaten now are 1-does it bring pleasure? 2- taste good?
    3- does it really matter at this late stage?

    how sad is that?
    X
     

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.