1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    So do I and so does he. Tonight I got so fed up with the constant sundowning starting about 5 o’clock that I took him to the bedroom, turned on the small TV and told him to watch while I had a food delivery because he couldn’t stop opening the door etc. even though I said that I would get a phone call. What bit of ‘the delivery man will call me’ is not understood? I accomplished this maneovre and he is all settled down again. Feel a complete heel but it is a bit relentless at the moment. Take care @margherita I know you feel the same and it’s not much fun x
     
  2. margherita

    margherita Registered User

    May 30, 2017
    2,330
    Female
    Italy, Milan and Acqui Terme
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    Another day and another resolution to be kinder when he starts his evening routine, which is so hard to deal with. I try ignoring it but that seems to encourage him to be worse. Last night I got him set up with the tv in the bedroom and he can roam around as he pleases. He didn’t like it because he wanted to be with me, but came down in triumph to say goodnight and that he had watched the news all by himself successfully. He had already been up and down and said goodnight several times by this stage so I wasn’t so thrilled myself because it’s almost impossible to concentrate on anything. I find myself rewinding, rereading or re anything else that I am doing. Perhaps he will improve as the days get longer. The care at home team are visiting this morning although he is not up yet which I don’t think matters. I find myself stuck in the same situation as many in that I am more or less his only contact which is not healthy. I shall see what they can offer “to help me”.
     
  4. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    288
    Female
    Basingstoke, Hampshire
    Where is your 'care at home' team from? Is it through SS? I've had various people in touch when I first got in contact with SS but have heard nothing from anyone since.
    I was organising breakfast for my husband this morning and popped out of the kitchen for a moment. When I came back he was trying to eat out of a dish left over from last night's dinner that I hadn't yet washed up. Anyone would think that he never got fed.
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    @jenniferjean I was given the team name by a friend who is involved with Abbeyfield an organisation that is concerned about elderly people https://www.abbeyfield.com/about-us/. The team is part of that but not through Social Services. I found another team called Helping Hands https://www.helpinghandshomecare.co.uk/ which my mother had about ten years ago, which I think can be accessed through SSs if you are eligible. The lady who came to do the assessment from Abbeyfield Care at Home was very caring and she is working up a care plan for me to help me leave him when I go to my activities. So far, so good and she also mentioned respite and recommended a place with an excellent reputation. It is interesting that he was asleep in bed most of the time she was here which actually helped. She met him before she left and I really liked her attitude. She said that she was going to help me and he was very happy with that. I feel quite rung out now but I am hopeful.
     
  6. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    Hi @Grahamstown ..just reading your post...holidays or not? We had two nights away last year on the fells in an idyllic cottage for 2 actually only 25 minutes from our home so just up the road really;) he was his usual contrary self but I think he enjoyed.I still did everything for him ....I’m now thinking we should go again but like you even a very short trip away seems to much to organise., so I search plan and delete :( Hey Ho
    A x
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    My husband breathes heavily and shallowly most of the time which I have mentioned before. It’s as if he is breathing his last at times, but he doesn’t do it as much when absorbed in a movie and with other people. I think he has forgotten to breathe correctly, or at least his muscles have. He is doing shallow upper chest breathing and this leads to co2 increase and he feels dizzy. I have been trying to show him how to use his diaphragm and tummy muscles but he seems incapable of doing that. Does this seem familiar? I wonder if the brain damage has affected his muscles.
     
  8. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    My husband does this when he gets a bit worried or frustrated and I do think it’s also because he’s a little bit scared at times...whether that’s right or wrong ...I’m sure someone will be more experienced know more and post shortly...
    A x
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    I have given up the idea of a break at the moment. I have a cruise holiday booked for May which I did last year feeling positive. I shall go ahead with the planning and see how he is doing then. I hope that I can get the carers in for a few hours, just waiting for the care plan now. That will cost, so as well not to spend money on holidays which he cannot participate in. On a cruise he can stay wherever he wants for as long as he wants, and it is a break for me of sorts, I just drag him off on the bus tours from time to time.
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    I have wondered about anxiety too. He has been thoroughly checked out so I know it’s the disease but it is very distracting the constant heavy breathing. He also does it in the car right in my ear as I am driving along, a bit dangerous at times.
     
  11. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    My husband will not let me arrange help gets very upset and “Its ok you can manage We do not want anyone coming in” he says....Showering him is the hardest part I’m so tired afterwards if he was compliant (( love that word)) it would be easy but he’s loud and edgy water too hot or cold etc etc . But yes we manage. Just.
    Ax
     
  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,796
    Suffolk
    Do you tell him you can’t manage? That if you had help, you could look after him for longer? What the alternatives are?
    He’s not likely to understand otherwise, possibly not even if you told him!
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    I only managed to get his agreement to a visit by saying it was help for me and the woman who came went along with that with him. He is adamant that he can look after himself which is typical I believe, and he has completely forgotten about it all now because short term memory is nonexistent. I shall have to go through it all again when the first visit is arranged. He would definitely resist any respite away from me. I have yet to see how it will work out but from the forums I know this is a difficult time.
     
  14. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    @Spamar... yes have told him and tried to persuade,all of that:( ...he’s also been told by his OT.but .as she says “You can lead a horse to water but cannot make it drink”.He uses one stick, has had several falls some with injuries some not.
    Ax
     
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    288
    Female
    Basingstoke, Hampshire
    I've been through this with my husband. He was adamant that he didn't need anyone coming in. I told him it was for me and just went ahead with it. I didn't make much of it with him and avoided conversation about it. Now he is used to it and accepts it. He may say to me "where are you going" followed by "I'll come with you". But I just say to him that this is what I want for my benefit and he seems ok now. I've been quite firm about it, I've had to. My next step will be looking at possible day centres. He says no way is he going to one of those. We shall see.
     
  16. PalSal

    PalSal Registered User

    Time time time....its all a matter of time. We started by getting a walker in 2015 and then mansitters the same year. In 2018...he finally started going to daycare. I barely made it in 2015 I was so ready for help. But now he doesn't really resist. I have not done respite..perhaps this will be the year. I is terribly expensive here. Good luck
     
  17. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,796
    Suffolk
    Respite was needed for carer breakdowns! But, pre dementia, he was the most reasonable man imaginable. Thankfully this continued post dementia as well. Delusions and hallucinations excepted, of course! But memantine sorted those.
    Another good thing was that he has been used to people coming his whole life ( me too) so nothing changed except that people were concentrating on him. He always appreciated that!
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    Unlike children, people with Alzheimer’s cannot understand the “if ...then...” phrase. He cannot understand that if he does a) then b) will follow. It has flown like a wisp of smoke up into the ether. Yes, it’s the usual difficult day ahead guiding him through the necessary steps of the day, with a total lack of understanding of what he has said he can do with what he is capable of doing. Here is an example to show an if, then phrase. If this all seems far too wishy washy then that’s because it is, life with dementia. Sigh...
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    Feeling a bit more upbeat today after the morning away at my meeting. I have not been able to get a carer yet so I have just gone for it and left him at home. He was still asleep when I left but I left his lunch ready with a couple of notes so that he would know it was for him, which he didn’t realise the other day. I checked that he was at home using the phone app. He was absolutely fine when I got home and appeared more normal than usual. Perhaps it is good for him to have a break from me too. He had eaten lunch and went up to bed the minute I got home. I feel refreshed and ready to face the evening shinanigans.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    909
    East of England
    Oh dear, the ups and downs of living with a person with dementia. I have to help him with his emails every now and again and yesterday I found one in his inbox apologising for forgetting his 80th birthday three months ago and inviting him to give the usual after dinner talk, and it has really upset me. It was unconscionable of them to forget in this day and age of computer calendars and I was heartbroken at the time because I could remember and he could not. It sees such a small thing but it symbolises so much loss.
     

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.