And so it goes on...

Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.

  1. AliceA

    AliceA Registered User

    May 27, 2016
    1,429
    Xxx
     
  2. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    530
    Female
    New South Wales Australia
    Hello all - I have been off the air for a bit but totally relate to most of the above - my husband coughs a lot and throws up lots of meals !! I was so depressed 2 days ago that after getting my husband up - breakfast etc I went back to bed and really would have liked to just stay there.
    My husband who does very little - sleeps a lot and absorbs care, offered to make me a cup of tea and toast !! And did so even though I said no thanks!

    Somehow my complete frustration and sadness got through to him for that moment .
    We have a good doctor and some good respite groups at least once a week - but I do rather long for real time out of this life !
     
  3. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    The ups and downs of daily life continue. He has not been at all good this week but today he got up at a reasonable time, saw that his colleague and friend was coming to see him and said that he would like to go out for lunch with him, having said the opposite earlier this week. He changed his trousers under protest but he looked good and happy as they went off. I think he was in host mode because he behaved as if he had arranged it all and was leading the way. I gave his friend a few quiet hints and tips before they left. I just hope that there are no negative effects. I am not going to pursue day care at the moment after careful reflection, and advice from TP, I don’t think it is the answer for him and would just give me grief. I am living in a topsy turvy world, sigh...
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    I had a difficult task today. His sister thousands of miles away sends messages from time to time and the gap between the messages illustrates his decline, and yesterday she sent a message hoping we were both well. I thought long and hard about what to reply because she can’t do much, has her own problems and health issues. I have gone beyond the point of platitudes because if I don’t give a reasonable picture of how he is then she is being lulled into a false sense of how he really is. So I just said it as it is in the nicest possible way together with a photo of him looking smart and happy drinking his morning tea. We did use video calls last year but he doesn’t want to talk now and I don’t think she can bear it either. The ripples of this disease spill out in large circles and I am thankful for our family and friends giving moral support if nothing else.
     
  5. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    530
    Female
    New South Wales Australia
    Hello @Grahamstown and all you lovely sharers..
    Not much to add this end - just good to share. With my husband’s relatives I let them talk among themselves - after A few morning teas they seem to understand. My OH still only able to eat very little today ! And Very tired- I was shocked today when a friend said - “is he shutting down “ - it goes round and round in my head. We will see the doctor on wednesay.
    I agree somewhat about the day care but if a friend takes him out that is the best day care you can get - a break but a good one! Love M/Joy
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    Good to hear from you and your post is true for me too. He is having a better weekend but that means doing very little, huffing and puffing on and off as he sits looking at his photos on iPad. At least he is up, washed, dressed in clean clothes and looks well groomed, but left to his own devices he looks like a very scruffy man. He was exhausted yesterday after his social outing but that’s the way it is now. Appetite is poor but I am able to give him little and often snacks. Take care xx
     
  7. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    397
    North West
    It is so difficult to sum up in words how the PWD is at the time of asking. Like you I feel I have to be honest but not so honest that they feel they have to act or send the social services round.

    At the present moment I feel my OH is shutting down, confusion is bad and the purposeful heavy breathing is driving me mad. He would not come to bed the night before last, until I persuaded him at 4 am, then he stayed in bed all day. When I asked during the day if he was getting up he said "the men are organising it". Later he got up, all sweetness and light and ate everything put in front of him.

    So if anyone had asked how he was 12 hours apart they would have got very different answers.

    My OH has a twin sister who cares desperately about him. She is not able to see him very often for reasons I completely understand. I am always honest with her because she looked after their mother who also had Alzheimer's. She always says she is so grateful that OH has me to look after him.

    Two days of day care are my salvation. OH has missed a couple of days due to arguing in the morning but on the whole it is good for both of us. As soon as he sees one of the carers (all women) coming to the door he says "There she is" and they call him "Smiler".
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    Is this in your own home because that’s what I am aiming for but I think it is going to take time to find someone. The heavy breathing is awful, it makes him dizzy because of co2 buildup and is now a habit partly driven by anxiety I think. I can’t do anything about it except for reminding him to breathe normally. That doesn’t last long. At least his friend yesterday noted that he did it a bit and I was able to reassure him that he was not going to collapse on him, I hope!
     
  9. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    397
    North West
    No it is not care at home. I have to drive him to the day centre. Thankfully they do not charge on the days he misses due to him being awkward in the morning. The carers are so pleasant, not soppy, just friendly and understanding. They have worked out my OH likes a laugh and tease him quite a bit. He loves it.
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    That is so lovely and you are fortunate to have such a reliable day centre. I am still trying but I am coping at the moment. Another of his habits is up and down for a wee all evening which he doesn’t do all day. I put it down to restlessness with sundowning. He is a bit better today and enjoyed his visit to the family this afternoon.
     
  11. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    530
    Female
    New South Wales Australia
    Oh that “shutting down” phrase !!
    I was thinking today it’s rather like one day you get a prognosis that says your dying shortly - and the next there is no bad news in the foreseeable future -up and way down- it’s emotionally draining apart from the moment for moment problems.

    My husband has a few kinds of care - the best one is a fellow who takes my husband for a long drive with another 1 or 2 men who are similar (D). They have lunch out. Those days are good for him because it is a stimulating - and yet safe - as this man is well trained.
    The other is a day care group but very small- just 5 to 10 -people with 3 being carers - they focus on them individually and I have no trouble taking him there as he likes the people (it took about 6 weeks though - to feel good ! )
    There is a larger day care group that he doesn’t like and I only take him occasionally when i know a few friends will be there ... they listen to music which is good! And finally there are cleaning half days when I can stay or go and I know he’ll be offered milkshakes etc
    so try all things - and even if you don’t need the time to yourself - the time without worrying is refreshing. Love mud-Joy x
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    I have felt like this for ages because at times he behaves as if he is at deaths door and then when in company he perks up. At first I thought that at this rate he wouldn’t last long but now I think he could outlive me. I met a carer with a lady in a wheelchair this morning and we chatted and she is coming round later. I know the agency so it’s a question of keeping at it. He does enjoy seeing his old student who takes him off and he tries to come regularly.
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    We went out to lunch with friends which naturally has exhausted him. He was not as good as usual largely because he couldn’t keep up with the conversation even though we tried to include him. He has come down late from his ‘rest’ and even though it is getting dark, insisted on going out for his walk. I am absolutely dreading the evening now.
     
  14. PalSal

    PalSal Registered User

    Can he still go out for a walk on his own?
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    Yes but only out of our front door and down to the field by the river which is a loop through a meadow, and back, about 15 minutes, no traffic or roads. He loves it and although I worry I can track him and so far all has been well except when he used to divert to the pub for a pint, just when I was trying to keep him off. One drink is ok, two and I can tell the change in him and if I can help it, nothing more. This afternoon I took him to a beautiful garden near us, and we walked through the sweet smelling winter shrubs which he was able to smell although he has lost most of his sense of smell. We had half an hour and then he was flagging badly so that was it but he agreed that it was very cheering. I think you still walk in the mountains with your husband don’t you and how wonderful that must be?
     
  16. PalSal

    PalSal Registered User

     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    Hello @PalSal I have been using the installed app on iPhone as a tracker, the phone just has to be charged, in his pocket and switched on and so far it’s been good. It is not very precise but good enough for me to see if he has wandered off track so I wonder if anything else is better. He won’t or can’t use it otherwise except for emails but even those are fading in his mind. This morning I started to feel psychologically stressed living this strange half life but I guess we all have our downs and ups too. Today for the first time ever, I thought life was not worth living without your health.
     
  18. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    530
    Female
    New South Wales Australia
    Hello @Grahamstown and @PalSal - the best tracker is probably a GPS watch - but my husband just wouldn’t wear it . And it’s hard to insist - so if your husband thinks to take his phone with him -that’s perfect.
    I thought my husband was a deaths door Tuesday night - then he woke up Wednesday- near normal - but slow - I am like Pavlov’s dog - I don’t know what to expect!!
    I was planning an OS trip to Singapore next month - I think I should buy the tickets the day we go !!
    Perseverance and resilience !! That’s what we all need . It’s s form of palliative care and I try to be grateful that I’m here to do it ! :mad:
     
  19. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    I went to have my hair cut this morning and decided to check another care home. I was warmly welcomed, it is beautiful and comfortable and of course expensive. They have respite care available and the manager was so warm and kind that I welled up and realised what a strain I have been under. She said that I should bring him for coffee and or lunch from time to time to get familiar with the place so I have booked to go for coffee next Friday. I feel that he would be happy there if the time comes.

    So sorry to hear about your husband’s episode @Mudgee Joy we do live from day to day don’t we which is why I have booked our cruise in 5 weeks time. The care home manager said that people had commented that they were a bit like a cruise ship. I also know that without the knowledge I have gained over the past year on TP I would be unable to take all these steps in the right way.
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    822
    East of England
    The other thing is that they have cooks cleaners carers etc. doing everything for the people all of which I do at home. I was really impressed. I wait on him hand and foot now. I must confess I could have taken him there this morning. Dreams!
     

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