My head says one thing my heart says another

Discussion in 'I have a partner with dementia' started by pevensey, Jun 29, 2019.

  1. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    I've not been on here for a while but I've been silently reading lots of posts, some of which are really thought provoking and heart breaking and they make my problem sound nothing major. But I'm really struggling with how I feel about my OH this last few months. Hes got mixed dementia they think, AD and Vasculer Dementia diagnosed 3 and half years ago, he has gone down hill really fast this past 6 months, both physically and mentally. His mobility is now practically zero, he can only walk for couple yards outside, so iits really difficult to walk with as far as Dr or local shop, a five min walk to Dr takes about 25 mins.and hes leaning heavy on me all time, hes had lots of falls indoors, about 3 this week and he cant do very much indoors so the whole house and garden is up to me. I'm really tired, and unhappy I go to bed not wanting morning g to come cos I know it's all going to start again. I really would like a week just on my own or to visit my sister who lives about 4 hrs away , my daughter has said she will take me for a long weekend which would be amazing but OH is refusing to have my son come and stay or anyone at all. I told him he could maybe have a holiday and go for respite in a lovely care home near us, he said he would rather hang himself. The thing is also, we never really had a great marriage we've been married for 57 years, and he wasnt very nice a lot of the time he never celebrated our 25 th or 50th anniversary my family did us a 25 th party but he refused to go said it was a lot of rubbish. I didn't ever get cards for birthdays or anniversys or presents., I left him twice in the past 10 yrs the last time was for 8 months when I went to my daughters and was adamant I wasnt going back to him that time but he was then diagnosed with this dementia and I felt I had to be there to care for him. At first he seemed to have changed a d was good tempered and a nearly proper husband but now all the nastiness has come back, and I feel that I really want him to go into care, I feel I had a very unhappy 5o odd years and I would love my last 10 years if I'm lucky to be happy and content and just me time I would love to know what it's like to do what I want when I wasnt. But I'm not sure hes bad enough even the my daughter says YES MUM you must do this I know he would obviously refuse anyway. But I'm at my wits end , I cry everyday over silly things. I'm seeing his GP with my daughter on Monday to let him know how he has deteriorated, he has had blood and tests to check for infections but they all ca e back clear. I'm sorry this was such long post but must needed to get it of my chest. Am I being really bad wanting to discard him to a care home.
     
  2. patmac

    patmac Registered User

    Jan 14, 2012
    28
    Hi Pevensey, like you I've not been on this site for quite a while. My heart goes out to you as you are struggling with your situation. Mine is slightly different as I live with my mum who was loving and caring in every way, but that changed with the progression of the disease. I moved in with her six years ago after concerns about her ability to cope/manage for herself, she is 90 now. I can't tell you what you should do, that must be your decision. All I can do is repeat what has been said to me. If the situation is affecting your health and well being then change it. Perhaps if your OH went into care you would feel better able to visit him without feeling any animosity towards him. The thing is, would he voluntarily go into care?
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    What a pity you went back to him as by now he would probably be in care. Listen to your daughter and if you can then move back with her. Let SS know you can't do it any more and he is now their responsibility.
     
  4. Donkeyshere

    Donkeyshere Registered User

    May 25, 2016
    158
    channel islands
    I feel for you - my m-in-law lives with us and also refused respite care and despite being usually mild mannered also made her views known when we asked her to go into a home for 2 weeks as we needed a break. I would not beat yourself up about thinking of getting him into care, you need to look after yourself. My friend looked after her gran a few years ago with dementia has always said to me go as far as you can cope but not beyond that. She got to that point when she threw a dinner plate at the wall! You will not be discarding him in the slightest, it sounds like you have reached that point, listen to your daughter, do not feel guilty you are doing the best thing for all of you. Take care of yourself first X
     
  5. PalSal

    PalSal Registered User

    LIsten to marionq and others here...go and have a break, or perhaps better yet go for good and do not return. If he wont accept you son's help then the authorities will step in. Choose to be happier and freer.
     
  6. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Good morning pat mac, thankyou listening, NO, I'm sure he wouldn't want to go into care that is the problem but then I dont think anyone would really, but I would like him to start of going just for a week to give me a break and hopefully he would like it and want to stay longer., but he would o my do what he wants he wouldn't be thinking about me and my needs.
     
  7. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Thankyou marionq, I've been thinking the same thing for past year but mainly for 6 months I really should have listened to my inner self 3 yrs ago, but I've always been a bit of doing what other people want me to do especially where OH is concerned, I have to learn to be more assertive but it's difficult at nearly 78 yrs old.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,391
    Kent
    Hello @pevensey

    Do you think you could detach yourself from your husband even while you are sharing the same house?

    Perhaps do whatever you do for him but as a carer rather than a wife. Withdraw the companionship if he is so unpleasant, sit in a different room if you can. Perhaps thi will make him realise your value.

    When my husband was particularly difficult, I sat in another room and told him I did not deserve his treatment. It was only temporary for us during a very difficult stage but it was the only way I could handle it.

    Dementia or not, once your husband realises he cannot continue to bully you, he might appreciate you more or it might help you to disconnect and make more difficult decisions.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,284
    Female
    South coast
    The big problem with dementia is that their world narrows and narrows so that they can only see their own wants, desires and comforts. From this point of view why should he agree to someone else (even his son) looking after him as it will make his life harder? He is totally unable to see things from your view point, or even to understand that you are tired, so he is never going to agree to anything. If you want to change something you will have to change it yourself, because he is now incapable of changing anything.
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    You left the man he was - you were unhappy, you went back - you are still unhappy - moreso.

    Forget your age for the moment... forget the decline that is dementia.. forget what he might feel about it all - and think of yourself for once.

    Ask yourself the question " Can I see myself being in this situation 10 years from now?"

    If the answer is "No" - and I think it is - then think again. If you cannot see yourself in this situation 10 years from now, remember this situation will no longer exist, as it will get much worse as the disease progresses.

    No one HAS to care for another human being. It is time for you to think of yourself. If he is in a care home, you can still visit him on your terms, and probably have a better relationship with him.

    Do it - get things moving with the support of your daughter, social services etc and give yourself a break to enjoy your own life. You deserve it.
     
  11. Olliebeak

    Olliebeak Registered User

    Sep 13, 2014
    57
    Buckinghamshire
    No of course you are not bad. You have a right to a life as well and it’s good to hear you have your children’s support. Being a carer comes with a huge side order of guilt on top of a situation none of asked for or wanted. It’s so hard to keep loving someone who has changed into a totally different person. In my case from someone who was so caring and gentle into someone who lives in a world of his own. But for you it seems your OH was not a nice person anyway. It’s also so hard to know when is the “right time”. It has to be the right time for YOU. I hope you have a good sympathetic GP who can see what a terrible time you are having and help you make the changes you need.
     
  12. lis66

    lis66 Registered User

    Aug 7, 2015
    253
    Look after you pevensey xxx
     
  13. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Canary that is exactly right, that's exactly how he is, it's so frustrating trying to explain something that's quite straight forward and he thinks it's me being stupid and not understanding it. Even financial situations and official people advising him, there always wrong and hes always right, there all crooks he says after his money.. I've had to cancel a walk in shower we were getting for him with a 50% grant we were getting, because the occupational therapist and the grant manager came to explain it all and what they would be doing, hes convinced they are to builders who are just after his money and dont know what there doing, refusing to have them back in the house, have to sort it out tomorrow.thankyou Canary for your thoughts on my problem, take care.
     
  14. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Hi Granny G, I do that sometimes, if he speaks badly to me, I will walk away and go into conservatory or upstairs somewhere on my own and have a frustrating cry , trouble is once I start I cant stop crying. I will go in garden just to get away from him trying to walk about the house without falling, it's very difficult for him but I'm ashamed to say I've stopped feeling sorry for him, although he has quite a few falls now and that always concerns me, and I feel bad then but hes lucky he hasn't hurt himself badly YET. when I was helping him take his vest off the other day he had 2 nasty bruises and a cut on his back. I usually try and detach myself then have a good cry or bang about in garden.
     
  15. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Hiya maryjoan, thankyou you said exactly what I am feeling, NO I dont want to be doing this in 10 years not even 1 year especially knowing how bad it will get, if I'm even here in 10 years, I REALLY WANT a life I've never had which is pottering , being content , seeing my friends without clock watching which I did before he was I'll, just have me time with my family, I cant have my eldest daughter to our house cos hes detests her they had a falling out about 4 yrs ago, she's tried to come round and make her peace but he wont have her anywhere near the house, and hes not great with my son even though he offers to stay with him for weekend so I could go away, he calls him a waste of space, and he really works hard in a difficult job. And he fell out with our grownup granddaughter, really upset her. SO hes a very difficult man and yes I want a peaceful happy life, no dramas.
     
  16. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Hi Olliebeak, thamkyo for listening. I want it to be the right time I want a happy content life NOW where I'm not crying everyday and dreading waking up in the morning because it will be another long day. But I think it's to soon for OH I've seen people on here talking about there problems and they seem much worse than mine and they have struggled for much more years than me.. But yes I'm seeing OH GP tomorrow with my youngest daughter and tell him how hes deteriorated this last 8 months,hes a lovely GP and does keep a check on OH but hrs also very good and concerns about me always asking if I'm ok YES hes a very good Dr.
     
  17. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Thankyou Lis66, I will try will feel better after tomorrow and chatting to GP.
     
  18. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    Tell the GP the truth about the situation. Don’t be brave and say you’re fine.
     
  19. pevensey

    pevensey Registered User

    Feb 14, 2012
    139
    Female
    Eastbourne
    Ok, so I saw OH GP with my daughter on Monday, I was very anxious as to how sympathetic and if he would really listen to my state of health and especially my OH deterioration. I needn't have worried, he was really wonderful. As I started to explain the situation and trying to emphasize how bad OH mobility is with my daughters help I did what I didn't want to do and got really upset and emotional, so he rang someone in reception to bring me cup of tea. And he listend. The outcome was, He paid a home visit to see OH today and was shocked at how much worse be had got since be last saw him in April. He watched him try to walk but as he took couple steps he lost his balance and fell over. He tried it again later and OH did the same. SO, hes said he urgently needs proper care in a care home, spoke to OH explaining this and oh said he would think about it, but Dr insisted that he couldn't leave with a clear conscience knowing how unsafe he was and that I couldn't give him the care he needs. So we are now in the process of looking for a care home as soon as possible. Dr has referred him to S/S as urgent for them to assess. My head has been all over the place today. And I cant sleep tonight, there seems so much to sort out. Not sure where to start. The self funding and how to do it, we have our own property in joint names but no savings. So that's the most important place to start. Just need to get some sleep now if I can
     
  20. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    If you have no savings it will not be self funded. His state pension and half of any occupational pension will be topped up by SS funds. The house will be disregarded. Be careful when talking to SS and don’t try to rush in with offers to use your own money or sell the house. Neither of these is necessary.
     

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