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Casbow's Diary.

Discussion in 'I have a partner with dementia' started by Casbow, Feb 3, 2017.

  1. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Decided to start a diary. Some of this is already written on my thread Black Hole. But it is nearly ten years since David was diagnosed with vascular dementia. Life has been changeable to say the least. So today I went into his bedroom at 8.30 am to try to cheerfully wake him. I already knew what would happen. But one lives in hope. Today is Friday. The only day in the week when i get 3 hours off to do 'my own thing'. I had hairdressing appointment at 11.15. My carer from Crossroads arrives at 11.00. Well when I woke him up, he had a smile and all was ok. Until I said "Come on then love, lets get you up. I was in and out until 12.15. By now our carer had arrived. I had cancelled my hair appointment and I was just a little bit agitated.When he did get up I quickly changed his bottom half and put dry top on him then dressing gown. He then ate breakfast, ignored the carer and began to play with his toys!!! (Mostly the grand children's.!!.)The afternoon was spent mostly sleeping. After pacing about for about 2 hours after dinner he finally sat down with me for about an hour. I suddenly started to feel very hot. I went to the central heating thermostat to find it on 35 degrees. To my reckoning that is about 100 degrees. So here I am writing this and feeling just a bit warm.!!!
     
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,848
    Ireland
    Sorry it all went pear-shaped today and you did't even get to your hair appointment. Hope your diary-writing here will be a bit of an outlet for you Casbow x
     
  3. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Today he finally got out of bed at 12.15 . Last night he went to bed at 9.00. He first of all doesn't seem to be able to wake up. Then he absolutely refuses to get up. It wouldn't matter so much, but he is in a wet bed since 9.00 last night. I worry about his skin. After being in bed for more than twelve hours his skin is itchy and red. When he does finally get out of bed I have trouble trying to wash him and everything. Anyway a bit later he ate breakfast and had a drink. I hoped to go out ,just for a little while.Haven't been anywhere for days. This afternoon he was quiet and slept a lot. Then after dinner began pacing. I sat to watch television and when he came into the room I asked him to sit with me. He finally sat down and we held hands, and he said "That's nice.". I cried watching television. Holding his hand, but feeling so alone.xx
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    64,186
    Kent
    I`m so sorry and sad for you Casbow. I know it sounds trite but it`s all I can say.
     
  5. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Thankyou. I think i am in an even worse place at the moment as I have respite booked for 2 weeks starting 13th Feb. I don't want to do it. My mind won't shut it out. Especially bad when I wake early and cannot go back to sleep.x
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    64,186
    Kent
    Why don`t you want to take respite Casbow.

    You never know, your husband might just be less challenging for strangers and it might help you to realise life could get a bit easier for you.
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    3,865
    Female
    Scotland
    Please take the respite as you will not be able to keep up this level of care without a break.

    John had two weeks respite last year and had forgotten it before he got out of the car at our front door. I on the other hand had nice memories of meeting friends and family and travelling to the Western Isles.

    Please take a break
     
  8. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,495
    Ireland
    I dreaded William's first Respite too Casbow, but apart from the fact that I was becoming ill from stress, lack of sleep etc., William was also becoming ill as he wouldn't eat or drink enough at home and wasn't taking his meds regularly. I had put off the respite as long as I could assuming he would not do well there. Actually, (and if I'm honest, I felt quite hurt by this) he loved it. He thrived, ate well, drank plenty, took his meds, and seemed to enjoy the company.

    Lovely moment when you were watching tv, and I can understand your reaction. The only "peaceful" time we had at home at the time was in the evenings, when he would sit in an adjoining armchair, and we would watch dvds for an hour or so, and like your husband, he would hold my hand. During that time, I would get his nightly treat of a bowl of his favourite icecream - with his medication in it - and he usually would go off to bed relatively peacefully, even if sometimes he went in his clothes. You need to take whatever moments of peace and happiness you can snatch from the jaws of this illness.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    64,186
    Kent
    My first respite was dreaded but unavoidable. Members of my husband`s Mental Health Team came with me to support us both.

    It was something I had to try in case a time came when it was an emergency.

    Some TP friends had booked a night away to see Mama Mia and at the last minute I decided to go. I had a wonderful couple of days in London , the first break for years , even though I was weepy at the drop of a hat. I was with others who knew what it was like which certainly helped.

    I phoned the home from London . My heart was in my mouth, wanting to know, but at the same time not wanting to know .

    When I asked how Dhiren was, the carer said `What are you worrying for? He`s a darling!`
     
  10. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    He had one week respite in September and to be honest all the information I got was, He had a bath today. Next time I rang He hit a carer today. When I quieryed
    that she said Don't worry we get used to it. Next time I rang He shouted at another resident.. When i went to get him after 1 week, He had not been shaved, (I know they cannot make him) 4 items of clothes missing. All with his name on. Wearing the same pair of socks although I had sent 6 pairs. I could go on but I just didn't think it went very well. He wouldn't even look at me when I went to get him home. I will be taking the respite break even though it is worrying me. Need it. This is so far today-- Wouldn't get out of bed again. He went to bed at nine last night. Got out of it at 12.15. The biggest problem its that it is soaking wet by the time he gets out. I go in and out every 15 minutes and he has his eyes shut and mostly won't open them. Just says no he is not getting up. Then when he does he lets me take his wet things off (I try to wipe him with wet wipes at this stage as later he often won't let me wash him.) Then he eats his breakfast. Them he starts being horrible again. The voices come back and I just have to leave him to get on with it. So no going anywhere at all again. He is still in Dressing gown. I wonder if I will remember the way to town when I go next.!!!! x
     
  11. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,495
    Ireland
    William often wouldn't allow me to wash him either, but I was often able to use incontinence wipes (larger than wet wipes, and have moisture barrier built-in to help prevent nappy rash) and bath in bed wipes, which can be gently warmed in the microwave (or, for just one or two, in a plastic freezer bag in hot, but not boiling, water).

    Sent from my Moto G Play using Talking Point mobile app
     
  12. Wiggy41

    Wiggy41 Registered User

    Dec 25, 2016
    37
    Eastbourne
    I feel so guilty after reading your post Casbow and all the replys you had of carers in the same position. I've been on here with a post about my OH with VD and talking about his aggression, verbal and close to physical but not quite yet. All your problems seem far more heartbreaking and such hard work and unrelentless 24/7. At least my OH can look after himself and go out by himself, not that he does go out very much now. I know I have to deal with his verbal abuse and accusations but I can sometimes walk away from that if I can at the time, lock myself in a room for an hr. But all you carers on here havie to cope all day everyday. and it seems without a break. I thought I had it hard but now realize no way as hard as the people who's posts I've read on here today. Take care and keep strong
     
  13. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Hello Lady A and Wiggy. I will look on the internet for the wipes Lady A. Thankyou. Wiggy we all have to deal with different situations with this awful disease . It is not easy for any of us including you. The thing is it changes every so often so that just as we think we can't do this anymore the very worst thing changes, and we find we can carry on. (Until the next more challenging behaviour starts. Thankyou for your kindness.------ Meantime our youngest son and his wife visited this p.m. and usually my husband shouts as them and tells them to **** go. Today he was like a three year old playing with all the bits he has accumulated like a little boy with new toys. They, I think enjoyed their visit for a change and we even all had a laugh. So that was really good. And he stayed ok for the rest of the afternoon and evening. No matter how we try we cannot understand or predict this awful disease.xxx
     
  14. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,495
    Ireland
    Casbow, I got the wipes, and other stuff, from completecareshop.co.uk And as your husband has been diagnosed with dementia, you shouldn't have to pay VAT on supplies like this.

    Sent from my Moto G Play using Talking Point mobile app
     
  15. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Thankyou LadyA have ordered today.xx
     
  16. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    This is yesterday. Running a bit late. Mostly I think because the manager came from the Care home to see David. He was in a good mood and I managed to get him up by 10.30. I think it all went well. They are accepting him for two weeks. Now I am in the process of trying to get his medication in liquid form. He has not been able to swallow tablets for about 2 years. So I crush them and mix them in 2 teaspoons full of yogurt. I know that care homes are not meant to do this but the last respite home did and so did the hospital when he had his seizures. So just another thing to sort out. After they left he was in a good mood so managed to go to the local shop for a couple of things. Not important but so good to get out for a short while. By this time after a late lunch the time went quickly and we had a small dinner as it was a bit close to lunch. Then he started pacing and shouting at the t.v. Pointing to a women who was apparently sitting on the kitchen worktop. Eventually i managed to get him to sit with me and what was left of the evening went quietly.x
     
  17. Casbow

    Casbow Registered User

    Sep 3, 2013
    815
    Colchester
    Hi there. Well David finally got out of bed at 10.30ish which is an improvement. But he was in a very bad mood and remained like that until about 1.00. Didn't eat all of his breakfast and would not drink anything. So nothing to drink since 6.00 last night. I thought he might have a urine infection with the lack of drink and the agitation. But then he settled down and the rest of the day right up to bedtime has been as lovely as dementia can be. He sat all afternoon playing and talking to himself. In good humour. then ate his dinner. Which was ok but this time did not use his fork at all. Just sort of managing with a knife. Then sat with me this evening dosing and watching TV. So if I discount boredom it has been an o.k. day. Hope your day has been o.k.xx
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    64,186
    Kent
    It really is 24/7 responsibility isn`t it Casbow.
     
  19. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,495
    Ireland
    Casbow, will he eat stuff like ice cream? William would never drink nearly enough here at home, but he loved ice cream, and that counts as a liquid. Not the healthiest, I know- but as his GP said, when you're stuck between a rock and a hard place...!

    Sent from my Moto G Play using Talking Point mobile app
     
  20. Agzy

    Agzy Registered User

    Nov 16, 2016
    318
    Moreton, Wirral. UK.
    Oh Casbow, how my heart goes out to you in your daily struggle made worse by the the knowledge that I, and others, are already are already struggling with similar or will be in the future. My long term concern on the wetting front is that Pauline has to self catheratise three times a day, a task I can't imagine me ever doing never mind coping with everything else. Hope you have managed to cool off and that the respite holiday goes well for you xx
     

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