My wonderful husband's decline

Discussion in 'I have a partner with dementia' started by tigerlady, Dec 9, 2015.

  1. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    I have tried several times to start this thread but each time I end up going on and on and writing a book instead of a post and crying all the time.

    Still got the crying going on. I'll try and keep it short. I think he started suffering from dementia in about 2006 but he refused to accept that anything was wrong. He wasn't officially diagnosed until February 2013, when he was quite bad and eventually I persuaded him to go to the doctors. When he had the memory test, and the doctor said that he was immediately going to cancel his driving license and that he scored so low (8) on the test there was no medication that would help him. I then contacted the social services and the alzheimers society for advice. I had visits from the SW, AS and the CPN, and he was always fairly ok on their visits, but the only help that was offered was carers coming in twice a day but that wasn't the sort of help I needed - he needed watching and helping when I wasn't there, not just flying visits. In the end I had to video him on one of the difficult nights to show them how difficult he could be.

    Another blow was that in May 2013 I was diagnosed with breast cancer and had to have a mastectomy in June, chemo from August to December and a lymph node op in January 2014. I didnt have radiotherapy as my surgeon thought it wasn't necessary as my lymph nodes were clear, and I couldn't have left my OH every day for 3 weeks. OH never did understand what was going on with me - still doesnt.

    I found it increasingly difficult to cope with his erratic behaviour and the "sundowning" which was originally in the evenings but then was all day. He used to bring some of his clothes from the bedroom and beg me to take him home and then he would go off anyway - even in the middle of the night. He even climbed out the window in the night when the door was locked, and a neighbour coming back from a shift had to wake me up at 2am to let him in. He alternated between insisting he had to go home and on the other hand telling me to get out of his house as I wasn't his wife. I suppose the wig and the scarf when I wasn't wearing the wig might have made him think I was a different person. He was also getting quite aggressive with me, but he could never remember afterwards.

    In June 2014 the social services sent an assessment team out and he was sectioned but the horror of that day haunts me - he went quietly enough in the car of an aide of the CPS he had a good relationship with, but I felt worse than I had ever done when he was aggressive with me. He was not cognitively aware enough to take another memory test, but after a brain scan it was confirmed that he had alzheimers and some vascular dementia. I wanted to have him home again after the section had finished, but they said I wouldn't cope and put him on a DoLs as he was very aggressive when it came to personal care. He was assessed as being eligible for CHC, and as I couldn't find a home that had a vacancy that would take him due to his aggression, he was in the hospital unit for 4 months. Out of desperation to get him out of there, I placed him in the only nursing home that accepted him, realised after 1 week that it was no good, (even though it was on the list of homes receiving CHC funding) and I searched for better homes but they all had long waiting lists. Eventually 4 months pleading and letter writing and phoning, saying that I would have to take him out of that home and back to live with me, the CHC pulled some strings and got him into a really good care home at the end of January.

    The home is as good as it can be, with kind, gentle carers. It has free access to the courtyard garden and I can take out dog in and I take him out for meals and outings but always he wants to come home, although thats what he always said when he was at home. He gets quite distressed sometimes -he hates the other residents coming near him and has hit out at 2 of the male residents. He mostly spends his time sitting alone in the corridor or in the dining room when others are in the lounge. He says to me, in his more lucid moments - that "these people aren't right and I just want to be with you" When I am there visiting, and he gets in one of those moods, I have to sneak out while he is wandering the corridors and then I cry all the way home. The carers say he's fine when I'm not there - he thinks he is there doing work, as he was a builder, and he thinks he built it. He also sometimes thinks that I live there with him.

    Now, as I said in my original thread - they want to give him an anti-psychotic drug to try and calm the aggression down. After reading everyone's posts and reading the excellent book by Graham Stokes "And Still The Music Plays" I am so worried about this, and I wish I had discovered this forum and that book before I got desperate - I might have been able to manage at home. I am crying so much thinking I have let him down.
    He was so adamant that he never wanted carers in the house (as there was nothing wrong with him), but I wish now that I had tried that option first, but would a carer have been able to cope with the aggression he had when he was determined to "go home"

    And why do they have to shower him every other day anyway - he went 2 weeks between showers at home sometimes - when I felt he had to have one I had to plead and cajole and promise rewards until he showered - it took hours sometimes - but no way could I have forced him. He is such a private man, that it must horrify him to be forcibly restrained while someone takes off his clothes - I cant think that any drug will stop him feeling as if he has been violated. They say afterwards he is pleasant and happy and can't remember being aggressive.

    I cant remember the name of the drug they are going to give him - sulpiride was mentioned but I read its not suitable for people with dementia - the doctor today mentioned a drug beginning with R -cant remember exactly what it was called - I will ring tomorrow and find out

    Sorry about the long post - I felt it might clear my head to write down a bit of my story about this terrible disease
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I'm so sorry you're feeling so bad.

    You haven't let him down at all. You've fought for him every inch of the way.
    Unfortunately this vile disease means we are helpless in so many ways.
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Good morning tigerlady

    What an awful situation you find yourself in. I'm sorry things are so bad for you both. It's clear that you love your husband very much and that you have done your very best for him. You certainly haven't let him down. I hope the medication your husband is about to receive gives him some peace of mind.

    I'm glad you have been able to share on TP and I hope it has helped in some way to write it all down.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello tigerlady

    I`m not surprised your post is long, so much is happening in your life it would be imossibe to put it in a nutshell.

    I cannot possibly know what you have been going through with your own health worries in addition to your husband`s. I can however identify with the behaviour challenges and the sundowning. `Sundowning` sounds so romantic , while the reality is a nightmare.

    My husband was prescribed Amisulpride to try to modify his behaviour. He was given very small doses. It didn`t solve our problems completely but it did calm him a little so at least we had some better times.

    You can only try. If it doesn`t help, your husband can discontinue taking it. My husband had to try a few different drugs until one was found which suited him and although it was a painful experience, it did enable me to keep him at home for a further 18 months.

    I know there drugs are frowned upon but when someone is living in torment, all the compassionate communication in the world cannot help.
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    Tigerlady, I read you post with tears in my eyes, as it echoed so many of the other posts on here, from spouses who are doing their level best to cope with their own private and horrific nightmare.

    When my husband became a Care Home resident last year, I too, like so many other spouses on here, wondered if I should bring him home, but realised I couldn't, but oh! -the guilt. :( Hindsight gives us 20/20 vision, but often we forget just how tough things were at home.

    You've had so much to cope with. My husband was in the early/middle stages when I had breast cancer, and couldn't offer any sympathy or understanding - because Alzheimer's had robbed him of it.

    These lovely spouses that we've known for decades as kind, gentle people, in my case nearly 50 years, change into strangers we no longer recognise. Please keep posting, because the wonderful people on here will understand everything you write about. Often, others will be able to suggest some strategies to make both yours and your hubby's lives, a wee bit better.

    It may be he is being showered because of Incontinence problems, or "every other day" is the rule of that particular Home. But if you have a word with the Manager, and explain your concerns, it may help. It may not, but alas, all we can all do is Try Our Best, and that's what you're doing, and have done, for years.

    I wish you well. xxxxxxxxxxx
  6. angiebails

    angiebails Registered User

    Oct 8, 2009
    My husband has been on risperdol for his aggression and it has worked to calm him down but he does now spend quite a lot of time asleep. But it does give me a break and he was extremely aggressive a lot of the time. I have gone from constant threats and physical abuse to very little so my life has been a lot better and so has his. Most the time he is at peace with himself where as before he hallucinated and turned violent constantly.

    Sent from my iPad using Talking Point
  7. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Thank you so much for your reply and thank you to the others. I am getting in such a state about showering and antipsychotic drug thing - maybe i'm over-reacting. The doctor says his aggression is unpredictable and puts others at risk, but if you look at the situations where aggression occurs there is always a reason - how ever illogical it sounds. When the CHC gave him the funding they said there was some hours of 1 to 1 included but I only found out recently from the home that it was for the provision of a carer to go with me when I took him out, and I have never used that, as I assumed it was for a carer to spend time with him. At the bad home they said they were paying for 13 hours a day 1 to 1 to stop him wandering into other peoples rooms, but I know they werent doing that.

    He isn't incontinent, although he does sometimes has accidents but I'm sure its because he isnt prompted for and guided to the toilet enough. He always let me know and lets me assist if necessary. On Sunday they said he had to have a shower, even though I checked his pants and they were clean and dry. I stayed for a while to try and persuade him to have one and he said he would have one when he got home. I chickened out of staying when they did it as I have tried that before and he just gets so distressed by all the people round him and I cant bear it.

    On Tuesday he was as good as gold. I visited to be there when the chiropodist came, as he wouldnt let her do his feet if I wasnt there. He shaved himself with prompting from me, and had his hair cut, so I took him out to lunch and for a walk with the dog afterwards. He was just like his old self but when we got back to the home he wouldnt get out the car - he said he had finished his work there and wanted to go home. After a while he gave in and went in and I stayed quite a while after that as there was a relatives meeting in the evening, and he kept looking through the door and waving at me and blowing kisses and even came in and kissed me. Again I had to sneak home when he went wandering - how I hate this life!

    I wish he could have had more 1 to 1 care with a regular carer so he formed a trusting relationship.
  8. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    This funding lark is unfair, and again, another example of postcode lottery. My friend in Devon's husband, has had Parkinson's for years, then developed dementia, and following a fall, was taken into hospital, where my friend was told he had 3 months to live.

    That was over 2 and a half years ago. His Care Home fees are fully paid, plus he has a 1 to 1 carer, all day and all night. I love her dearly, but she doesn't realise how fortunate she is that he receives all this care, and grumbles on the phone to me that sometimes, some of his carers take biscuits from his tin!!
  9. tigerlady

    tigerlady Registered User

    Nov 29, 2015

    I had mixed feelings when my husband was awarded CHC - obviously it meant that I didnt have to worry about care home fees but the fact that he was classed as "severe" in both cognition and aggressive behaviour just was a huge blow - he was my lovely husband who wasn't the same person anymore and it was in writing and official - I found it very hard to come to terms with, even though I had a very bad time with him in the time before he went to be assessed, somehow I was in denial that he was really that bad. I blamed myself for being too drained after cancer to be able to cope properly

    As for your friend moaning about biscuits being taken, I would buy them biscuits all the while - good carers are worth their weight in gold!
  10. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    My thoughts exactly! xxx

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