Who has stolen my husband?

Discussion in 'I have a partner with dementia' started by Sad Staffs, Oct 22, 2018.

  1. Casbow

    Casbow Registered User

    Sep 3, 2013
    997
    Colchester
    Hello, Sad Staffs. I have read every post on your thread and every single person can understand what you are going through. I felt exactly the same and my experience was very much the same. I had to make the decision to put my husband in a home. He was diagnosed with vascular dementia 11 years ago and our life was like you all describe, and just got worse as the years go by. It wasn't all bad, but it drains our energy and we all desperately want to have the love back from our partner that we used to have. My husband has been in a nursing home for nearly 18 months. I had a bit of a tumble and could not visit for six days. When I finally did visit, the beaming smile when he saw me, was priceless. Then one of the carers said my husband had winked at her the other day. I prefer to remember him smiling at me. But then I am pleased that he feels happy with the people caring for him. It is a very difficult journey we have to cope with. I would give almost anything to have my lovely man back, but it is not going to happen. Try very hard to enjoy the better moments. If you can, try to get get a sitter for a few hours once a week. There are companies that provide this service and your social worker will point you in the right direction. And yes, I had the experience of people thinking it wasn't that bad.!!! Because my husband would withdraw into quietness and not speak to anyone. So they probably thought it was always like that.!! I send my love to you all and hope you have had a reasonably good day and hope you have a good night. xxxx
     
  2. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you so much for your post.
    I love that your husband gave you his beaming smile.... and a cheeky wink for the care staff, perhaps he was hoping the wink would induce a lovely cup of tea and custard cream just for him.
    It is all so hard to come to terms with. I know from TP that I am far from alone, so many have responded with heart wrenching stories, but heart warming ones too.
    I know I’m strong, capable, but I’ve always had him there. We haven’t always got on, but we have always loved each other, unconditionally.
    I just don’t want to have this much responsibility, which is stupid as I have had a very responsible rewardimg career.
    I know I have a lot to be thankful for... wonderful memories that many people will never experience.
    We have lived in a bubble, now the bubble is bursting.
    My husband has poor health. In reality I think it is this poor health that is exacerbating his dementia.
    Thank you again for your post. Please keep in touch.
    Sending love, Barbara xx
     
  3. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    A lovely post, so Cyprus village life. A wonderful story of two oranges.
    We came across the navy military marching in a quiet street way off the beaten track. They invited us to watch, of course we did. What was so funny was that two divers were marching complete with flippers, goggles and oxygen bottles and mask! It was a sight to behold.
    I would love to be there with you, tonight I will go to bed and dream about Cyprus. It is lovely that your wife is still able to spend so much time in a place that you both clearly love.
    Love B xx
     
  4. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    I called him selfish last night when I was getting him ready for bed. He seemed to be being difficult on the back of a very bad day.
    So, I couldn’t sleep, he was snoring, I asked him to turn over and he said ‘no, I’m selfish aren’t I!’.
    He remembered that alright!
    So, this morning I toddled off for my quick wash leaving him in bed. When I had finished I went into the bedroom and said ok, now time for your wash. He sits there and asks what he has to do, he can’t remember the steps we go through every day, so I go through, one by one.
    I said let’s get your pyjamas off, then his incontinence layers, then I asked him to get an apple green bag to take the mass of mess.
    He just sat on the loo, I said are you ok?
    He said ‘no, I’m selfish aren’t I?’
    So, he can’t remember the things we do every day, step by step, together, but he can remember I called him selfish!
    It’s an odd confusing life for us both.
    B xx
     
  5. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Oh dear....
    he is so aggressive, difficult, confrontational.
    Just really unpleasant.
    We went for my pre op at hospital lunch time, he came with me.
    He’s finding fault with everything I do, constantly screaming and swearing.
    I’m just so alone. So sad, feeling sorry for myself.
    I know that the escalation in his aggression is because he doesn’t want to go into the care home.
    I can’t do anything about it. If I could keep him at home then I would.
    My operation and him in a care home for two weeks, is a last resort.
    Life is unbearable.
    Everything is a fight.
    Is any of this worth it?
    It’s a desperate desolate life with no happiness. I don’t want it.
    Is the escalation and his increasing tantrums purely because I won’t be pampering to his every need for two weeks?
    Or is it something more?
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,277
    Sweetheart, I doubt if he could actually envisage you being away for two weeks, as a concept I mean. He probably senses something is taking your attention away from him. You ask if any of this is worth it. And say that life is unbearable.
    Darling, I know and you know I know. Look, when you are in hospital, ask if you could talk for a little while to one of the hospital social workers. This is not about putting your husband in a home, but just to talk, tell her how it is, just to unburden a little. No pressure, just a suggestion. I know what a tremendous relief I found it to do that. It was the first point of light I had had in four years.
    I know it's a desperate, desolate life with no happiness. I thought there would be no end to my suffering. Keith and I made a suicide pact earlier on after diagnosis, but by the time we were ready for it, then really it would have been suicide and ... well something else.
    Preparing for my little church group, I read that whenever you think you have nothing left, no resources, God has more. What happened to us was horrible but illustrates that a little I think.
    All my love and thoughts, sweetheart, all. Geraldinexxxx
     
  7. MTM

    MTM Registered User

    Jun 2, 2018
    24
    This isn’t a silly thread, it’s so true. I miss my dad, I really miss him so much sometimes, and I also miss my mum. They’re both still there, but they are so different now. It’s been years for us now, this mourning without closure that can only end in death. Mum came back to me one afternoon a few weeks ago, as bright and sharp as if she didn’t have dementia. It was a gift and it was wonderful, but I had to hand it back. Dad is a little boy who throws tantrums, says inappropriate things to women and likes ice cream. Dad’s dementia began in 2004. That was the point when Mum couldn’t let him go to the loo in the night without talking him through it. I finally persuaded them to get live in care in 2016. Sometimes I wonder if Mum getting dementia isn’t a kind of mercy, so that by the time it gets really awful with Dad, she won’t know what’s going on. And then I feel guilty for being ableist!

    Love to all of you, it’s hard this thing.

    Love MTM
     
  8. MTM

    MTM Registered User

    Jun 2, 2018
    24
    Oh bless you, I’m so sorry. My heart goes out to you. Maybe, if it’s the right kind of care home, he’ll be more settled and happy there. I know that probably doesn’t help.

    God bless,

    MTM xxx
     
  9. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you Geraldine
    It’s been more of a struggle to get everything sorted because it’s a small private hospital funded by the NHS. So they don’t have the facilities such as social worker to help me sort things like advice about the care home. I had the option to go to our local hospital, but I chose to go back to the surgeon who did my hip, also on the NHS at this little hospital. In retrospect I shouldn’t have gone down that route. But too late now.
    I’m happy with the care home and the staff I’ve found. They seem lovely.
    The big problem for my husband is his incontinence. I have to put on and take off his pads, go with him if he feels like a pee to sort his pads out, put pads, booster pads and pull ups at night otherwise he leaks, gets agitated, aggressive and mortified. Getting them off and bagged in the morning is a precision task for me! Without his incontinence our life would be less stressful.
    I know this is at the root of him not wanting to go into the home. Someone he doesn’t know is going to have to do all this for him.
    His dementia is odd.... my goodness it confuses me! It’s like he has a mind of two halves. I’ve said so many times that sometimes I question his dementia. When he can be bothered he can talk to me about what’s happening in the news. But then he can’t work out which way up or back to front. He can’t work his phone, so many things he just can’t understand or work out. The simplest things he can’t sort.
    And his aggression, screaming and swearing, his finding fault with everything I do, these are all getting worse, I think it is quite a rapid decline last few weeks.
    I don’t feel in control anymore, and if I’m not in control then I don’t know what the outcome of our life is. What life? We don’t have any.
    I wouldn’t do anything stupid, but it would be an easy way out.
    I’m sorry if I’m distressing you Geraldine. I don’t know what I would do if I didn’t have you to talk sense to me.....
    You are so good, so generous, you put me to shame. All I can do is thank you..... love B xx
     
  10. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you for your kind words, take care, B xx
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,773
    Female
    South coast
    Hi B, you could have been talking about my OH here. I seem to remember that you said that your husband has FTD, yes? If that it right then I would like to explain that this is normal for FTD. Their memory for facts is relatively undamaged and they are well oriatated in the here and now - they know where and when they are - but their ability to perform tasks and work out how to do things gets worse and worse. My OH can talk about things in theory, but cannot take this "knowledge" and apply it into real life. A few weeks ago the phone rang and I tried to answer it, but realised that OH had picked up the other handset, so I couldnt answer it. I went into the conservatory and found him looked puzzled at the phone. The conversation went like this
    Me - I thought you were going to answer that
    OH - Yes, I was
    Me - So why didnt you?
    OH - I dont know
    Me - Can you remember what to do?
    OH - You press the green button

    But he hadnt done it, because although he could say what to do, he didnt know how to put it into practise.Yet he too, can tell me about the latest Brexit development - although I have started to notice that it is becoming all surface and he doesnt have any opinions of his own, just repeats the view of the artical he has just read.

    And the rages. Oh, yes, the rages! If I contradict him, say I dont agree, or even ask a question he interprets this as me trying to coerce him into thinking something else and taking him over. Saying "No" is like a red rag to a bull. All because his filters are gone and he cannot control the anger. Yet at other times he is so lacking in emotion and apathy takes over.

    It is all so, so different from mum who had Alzheimers.. I feel for you
    ((((((((((((((((((((((((hugs)))))))))))))))))))))
     
  12. kindred

    kindred Registered User

    Apr 8, 2018
    2,277
    My darling darling girl. This is so hard. I do agree, we can cope with a lot but the incontinence is the hardest. The care home sounds lovely, no worries at that level and believe me they will be so experienced at sorting out incontinence and not making him feel humiliated. Please, please always talk to me darling, please. I like the sound of a little hospital, wish we had one of those. Sounds very good.
    I know, it doesn't feel like a life. I know. With you all the way precious one. I promise there will be points of light one day. Sometimes a change, even if it is only an operation and recovery (on the other hand, that's a big change) gives us different thinking. With all my love and thoughts. Geraldinexxxx
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,505
    Oh dearest B, just hold on in there. Absolutely everything has piled up on you. It is so tough. The stay in the home may be the gateway to a way forward. There is just too much for you to think about.a big hug. Xxx
     
  14. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Hi @canary
    Everything you say here makes sense to me. I’m so grateful for your message.
    Nobody has said it could be FTD, they diagnosed Alzheimer’s, but everything I’ve read doesn’t quite make sense to me and to what I see all day every day.

    My husband now won’t answer the home phone. I wondered why, but I’m sure it’s because he can’t work out which button to press. With the remotes I have to explain which one, which button, and he just looks at them and I have to prompt him and he will do it, mostly. I say shall we watch tv, he says yes, but makes no move to switch main button on TV set. He will take cups out to kitchen, but not take tray. He gets out of bed and says what now? Sits on bed until I tell him step by step. But we do the same thing every day. He just can’t work it out, or think it through,

    I don’t know what to think. But he remembers some recent things that I can’t! But then my son came from Durham last week and he held a normal conversation with him, chattered away, and my son text me and said he wasn’t as bad as he’d expected.

    I think his dementia has been going on longer than I realised. I used to think he didn’t do certain things and I thought he was being mentally and physically lazy. He would have these violent aggressive outbursts and I didn’t understand, so the rows we had were really awful, but gone in a flash. I would say this has been going on for 4 or 5 years before it all came to a head last February when he ended up with sepsis, delusion and confusion.

    So what should I do? Should I get the mental health team to reassess him? He’s not due to be seen again until a July.

    I hear what you say about superficial opinions. It is like his mind is lazy, can’t be bothered, easier to let me do everything, then criticises me for taking over. I really struggle with his aggression, I don’t try to keep quiet and shut up most of the time. I just let fly as I need to get it out of my system. I will burst if I don’t.
    Sorry this is such a long message, but what you said made sense. I’m so grateful. Thanks @canary, with much love, B xx
     
  15. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you, always, Geraldine.... and I do know you are there for me, and for so many of us. I am so grateful that I feel I can talk to you. It’s so important. And your posts about Keith and the care home, well, they are always so interesting, warm, special. With love, B xx
     
  16. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    Thank you @AliceA .... your warm words, love and support mean so much. I don’t know how I would cope if I hadn’t found such lovely friends on TP. It would be a dark lonely place without your support. Love B xx
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,505
    Love back, xxx
     
  18. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    678
    Female
    When I knew that I had to go into hospital, I thought that social services would guide me towards the care that my husband needed while I recover.
    So I made a referral, explaining that we would be self funding.
    No one got back to me.
    I began to worry and spoke to the GP who suggested I googled local care homes, which I did. The GP also got his manager to chase it up. Still no one contacted me.
    I sourced a local care home myself and my mind was at rest.
    So, just had a phone call from social services. I said I’d sorted it, but what would have happened if I hadn’t. She said they would have tried to find a place but it could be anywhere in the county, whatever they could find, it seems places are difficult to source, there was no guarantee what, if, where, and we would still have to pay.
    I am such a novice to all this, but I guess I’m learning.
    I’m disappointed with the social care system.
    I thought there would be someone to care about these two 73 year olds, one with dementia the other with pain and physical difficulties.
    I now realise we are on our own.
    The state just doesn’t care.
    They care even less if you have worked and saved all your life.
    It’s like they have washed their hands of us and don’t care if we are alive or dead!
    Thank goodness I can get these things off my chest with my TP friends.
    B xx
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,505
    You are right, it seems as if the state has abandoned us, over the last few years cutbacks have been subtle and cloaked in that word efficiency. Rights are being eroded. This is not party political just a global phenomenon.
    Figures are cold and do not show the anguish and pain we go though. The difficulty in coping with the impossible.

    A blind friend in also in her eighties is caring for her older husband she broke down because his catheter keeps blocking. She is up several times a night. I am really concerned about her. She nearly fell down the stairs the other night, she is exhausted. There is no respite.

    I was told that the local volunteer car service is not taking on clients as there is a shortage of drivers.
    I have managed to get a driver as my husband has skin cancers that need to be dealt with. The hospital is a long journey and advise public transport as parking is so tight. I hope the driver will just drop us off, Walker and all!
    I have spent hours on this and confirming an appointment. Not being so well myself I found it exhausting.

    I really feel for you, dear B.

    I am looking at a care home tomorrow they run a day centre. I have heard it is good.
    It is only a mile and a half away, they have transport that picks up but will not cross the county border.
    My idea was that my husband would get familiar with a place in case I need treatment. My hip is dodgy and I am on radio therapy but there is just no support. It is all DIY.
    If I have the hassle of sorting transport, much advantage is lost.

    We are all trying, we want to be independent but the tools to help us are being taken from us.

    I could go on but you get the drift!

    Holding you in my prayers, B. Xxx
     
  20. GinnyJan

    GinnyJan Registered User

    Jan 20, 2018
    48
    I could have written this post myself, it is EXACTLY how I feel. Love and hate are so close, we can quickly swing from one to the other and back again. In much the same way, my husband is lost, then found (briefly), then lost again. I think we all live for the brief 'found' periods!

    I do hope your operation goes well and your husband is comfortable in the CH. If possible, you could count it as a holiday for both of you....a change of scenery (though I grant yours will not be pretty in a hospital ward) a change of the faces around you. Try not to worry about him, he will be fine I'm sure The staff in the home will have loads of experience in dealing with newcomers, I bet he'll really enjoy the attention :)

    Good luck for the op and your recovery. Love from Jan x
     

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