Rocky relationship, diagnosis of vascular dementia, assumption I'm a carer?

Discussion in 'I have a partner with dementia' started by woolf, Mar 6, 2015.

  1. woolf

    woolf Registered User

    Mar 6, 2015
    My husband was diagnosed with vascular dementia today. We have had a rocky relationship for a considerable time and I was on the point of leaving him but knew there was something wrong and I do care about him. Despite obstructive GP's, his denial, endless rows and hidden appointment letters I eventually managed to get a diagnosis. I now seem to be automatically cast in the role of his carer, I have not agreed to this or made a decision to be his carer so what are my options? I am emotionally & physically exhausted.
  2. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Sorry that you are in such a difficult position - do you think the behaviour that was causing problems in your relationship might have been caused by his dementia? I wonder if you have any adult children?

    It sounds as if you really need a professional counsellor to talk to so that you can step back and work out what is best for you both for the future, sorry I have no suggestions but hopefully someone will be along with advice soon.
  3. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    It seems to be the going thing that if we're married, we will take up the reins of caring. Everyone just assumes and expects it, I'm sure. I often wanted to run out the door when things got especially rough, and, over the last five years, sometimes, things have actually been dreadful. Now into my sixth year of caring for my hubby. I know he's too frail for me to cut and run. I couldn't do that and live with myself afterwards. Many reasons for that.

    Are you being offered any support of any kind, Woolf?
  4. malc

    malc Registered User

    if your not in a strong relationship or in the frame of mind to be a carer your not going to cope with the role,therefore not do yourself any favours or your partner,remember nobody can force you to care for anybody,social services will then have to organise care.
  5. Delphie

    Delphie Registered User

    Dec 14, 2011
    Hi woolf :)

    No one can force you to be your husband's carer, but it's easier, in practical terms, to step back if one's not under the same roof, so if you and your husband share a home you might have a bit of a fight on your hands to make sure that your local social services provide him with enough support. To be perfectly honest, I doubt this will actually happen. I hope I'm wrong!

    What I would urge you to do is consider your future. Are you still thinking of leaving? If so, how will you manage the financial aspects of the separation? Does your husband still have capacity to manage his own finances? If you stay, are you prepared to do any caring? Do you have children/family who might be prepared to help? Is he still managing relatively well, or does it look like residential care would be a good option for him? Will he be self-funding? If yes, you might want to have a look at how your joint finances, if you have any, are arranged.

    I know I'm not offering much help (sorry!) but all the above, and other questions, might have a substantial impact on how the next phase of your life unfolds. Obviously, the exhaustion you're understandably feeling won't help when you're faced with such important decisions.
  6. woolf

    woolf Registered User

    Mar 6, 2015
    Thank you for the unjudgmental support

    This is to everyone who has posted a comment. Thank you so much for the support! We do share the same house and we do have adult children. I have been offered one, 1to1 counselling session through the memory clinic which I have accepted, we have also been offered a 'what next' session which we will go to and I have booked a private counselling session to begin to talk things through. He seems to be coping better than I am and is focusing more on looking after himself which is good. I think I am in shock even though it was what I expected, falling asleep, forgetting stuff and being generally vague. I am meeting with my children so we can talk through the implications for us as a family. I am sure a lot of his difficult behaviours are down to his illness but the past few years have taken their toll on me, hopefully things will get better. He is in relatively good shape at present so we do need to plan whilst he still has capacity, but I think I also need to give myself the space to absorb the news. I wonder if my conflicted attitude to being a carer is a personal thing or generational as I am younger than my partner and from the 'feminist generation'. I do find the 'idealised perfect loving couple' imagery on dementia publicity quite difficult to cope with as it just does not reflect me and my situation.

  7. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    Hi Wolf, I don't have any advice beyond the very sound opinions already expressed. Glad you have been able to come onto TP and be honest though. It's a horrid diagnosis to get and a very difficult role to take on even if you have a very stable and loving relationship. I've often thought there must be an awful lot of couples out there who do have rocky relationships and how then do you cope with the demands. Glad you have got counselling booked. I hope this will help you to come up with a plan for the future. It's not going to be easy in any way I'm sure.
    I hope you will feel you can still post on here whatever you decide. I think the vast majority of members are probably completely grounded in the reality of the difficulties of the situation you find yourself in, and would be aware there are no easy answers. You are the one who has to live with the consequences of your decision, no one else knows what it's all about.
    Love and very best wishes to you. Es
  8. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    Hello Wolf, so sorry to hear of the situation you and your husband are now in, it is very similar to mine, and I too find it hard to cope with the "but he/she was my beloved partner so I care" point of view. I wish he had been, it might have made things easier. The assumption is of course that if you are partners, you will care. I made the same assumption myself - with much anger, depression, resentment, sense of unfairness and fear. There didn't appear to be any other option. I don't know if there was.

    Nearly four years after diagnosis I am still here. His condition is not hugely changed, he doesn't actually DO anything other than stare into space unless I take him out or organise something for him, and his memory for immediate things is almost non-existent, but one very good and strange thing has happened. He used to be a very aggressive, bullying person, I accused him of sucking the joy from my life in the past, but since this Alzheimers business, he has got nicer. Everyone we know has noticed. He is grateful for things done for him, meals prepared, outings etc, and although he still shouts and gets angry about some things, in a way he is a much easier person to live with. This helps. My daughters are very supportive (one lives abroad, one has a toddler and a baby, so neither in a position to do much physically, but always there on phone or Skype to talk ) so that helps too. Friends are very supportive of me, that helps.

    As others have said, whatever else you do, sort out out your finances separately, power of attorney, whatever, while it is still possible and before you take any big decisions.

    At the end of last year I began to get very low, in a real dark place, but someone told me about an on-line psychology service and that has been helpful in making me look at my situation and try to change a few things, and has so far had quite a positive effect on me. Friends are important. Continuing to do things that you want to do is important. Get all the help you can in whatever form it comes.

    I'm so sorry you are in this sad and difficult situation. I am seven years younger than my husband, he is coming up to 73 now, I was 62 and had just retired when he was diagnosed. I had planned to travel, to do so many things that my husband had always refused to do while he was well, leaving him at home to get on with it. Financially, separation had not seemed possible, jointly owned house and him with almost no income (I had been main bread winner for many years, he was artist not earning much) but at least I thought I'd finally get to do something for me. Life is a bummer
  9. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    And if you CAN escape, well, good on you and I will envy you. I have many fantasies ...
  10. Lawson58

    Lawson58 Registered User

    Well said JennyC.

    So often I read the posts about how much the carer loves the OH or partner and feel sad that I cannot feel that way anymore.

    Years of constant battles, denial, paranoia etc prior to finally getting a diagnosis wrecked our relationship and it was certainly no shock or surprise to me when told that he had AD. Strangely enough, the diagnosis brought some relief as he knew I had been right in being concerned about his welfare and medication calmed him down for a while as well.

    Some months before his diagnosis we discussed separation but we would both have ended up poor and being old AND poor is no fun for anyone. I could have survived but I knew he wouldn't so decided to stick it out.

    He has several other health issues and now the paranoia is rearing its ugly head again. I have great family support and have a couple of things that I volunteer for and enjoy but feel that in the middle of all this I have somehow lost sight of me.

    Frankly, I just hope that I outlive him and that I can manage a couple of years doing things I love and just being me again.

    So to all those carers who are caught in this situation go my best wishes and sympathy.
  11. JigJog

    JigJog Registered User

    Nov 6, 2013
    Well said Jenny C and Lawson58. I know exactly where you’re coming from.

    I too had decided to leave my husband prior to diagnosis. Mine too was a bully and only wanted to do the things he wanted to do. I really wanted to go to Rome and asked if he would come with me for my 50th. The response was 'No, I'll leave you some money when I die, and you can go on your own then!' Such a selfish man.

    But, as the AD has progressed, his personality has changed. I'm not sure whether it's the AD or the medication but he has had a complete personality change. He is much more passive and grateful. We have become closer. He now enjoys us going out together and we have one day a week when we just go out somewhere together. It may only be a garden centre or lunch in a local supermarket but we are spending time together and enjoying it. We didn't do that before. It’s much easier to like him now.

    He never discusses AD, he went into total denial, but he knows deep down I’m sure and is grateful for what I am doing. Last night he looked at me, stroked my arm and said, 'You're gorgeous you.' That came from the heart and would never have happened pre AD days.

    But like Lawson58, I too hope that I outlive him and have a few years being me and doing the things I like. Yes I too have many fantasies, a list hidden that I look at from time to time and dream.

    Wolf, I wish you all the best. I'm sure the counselling will help. Just give yourself time to get your head around this. I felt as if a steamroller had run through my life for the first 6 months but that bit does get easier with time. I understand where you are coming from with being cast into the role of his carer. During my husband’s first visit to the memory clinic, part way through his memory test, the nurse stopped to give him a break and told me that I would be able to get a carer’s assessment! Carer’s assessment? I'm his wife, not his carer! He hasn't been diagnosed with anything yet!

    I went to meltdown with lots of thoughts along the lines of, ‘I didn't sign up for this! This isn't what I want!’ I remember reading The Selfish Pigs Guide to Caring – that helped. I still have these times now, being honest, but somehow decide to carry on.

    Thanks to all who have posted for your honesty. To everyone caught in this situation my best wishes and sympathy too.

    JJ x
  12. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi Woolf
    It's you decision and your's alone don't get trapped/talked/persuaded to do anything you don't want to do. If your relationship was "rocky" and you were ready to go before he got diagnosed then whilst there is a chance things may get better more likely than not they will get more stressed not less.
    There will be all kinds of pressures, rarely do children like seeing their parents split up and their judgement may be coloured as your going will make them more responsible for him.
    I'd go to the sessions and counselling and see what they have to say but the sooner you make a decision the better as you'll need to get house sale and property splits and all that arranged while he still has capacity, leave it too long and it could get messy.
    You'll have to prepare yourself for the people who take the "what a cow, he get's diagnosed and she leaves him" attitude, it is a point of view some people will take, well stuff them it's you life and it's you who has to decide how to live it.
    Good luck
  13. woolf

    woolf Registered User

    Mar 6, 2015
    Lost of wonderful advice and support from everyone.

    Again thanks to everyone who has posted.
    Just starting to put myself first so have taken the day off work today to give myself some head space and am about to contact the bank to ask about separating our finances. What I am considering at present is selling the house and buying 2 small flats or whatever we can afford, close together (no small task). The general consensus seems to be that it would be easier to get a care package if we are not sharing a house? I could maintain contact with my husband even if separated and could do some caring, perhaps having him stay with me at weekends, going out together etc, but don't think I could manage 24 - 7. This is where I am at present but its bound to change. I am in many ways lucky I have lots of good and supportive friends and also my new online community. Thanks again.

  14. casey1

    casey1 Registered User

    Mar 13, 2015
    My first post because your situation is similar to mine. This may horrify others but here goes.
    Pre-Alz, I too have wanted to leave my older husband but do feel responsible for him. And he is a good person. We have independent resources and have always had 2 houses (2nd marriage). I have decided that I will remain involved in his care but will not become his only caregiver.. I don't think I should give up my active life since he can afford to purchase care.
    His life is winding down but I can't save him. I don't see that endless sacrifice will affect his outcome.
    I have forced his adult children to assume some responsibility and make sure they see what life with him is like.
    I realize this is atypical in that he can afford to buy care so I don't have to be there all the time, but I think a rocky relationship going in could result in harm to both parties. I feel constant irritation and anger since there is no reservoir of good will to draw on. Even if it meant a divorce so the state would have to assume some care, that is an option. I just don't see that giving up your life helps either of you.
    You sound like a solution seeker but it will take time -and time to feel at peace with whatever decision you make- perhaps your children might be able to help too.
    I wish you the best.
  15. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013

    Sweetie, it used to make me inwardly scream! Especially when they would be looking at old photos together. Nobody filmed John and I when I tried to do this, and he threw the photo album at me!

    I had 12 years of caring, and damned hard it was too. If people haven't lived with someone with AD they have no idea, and if your relationship has its problems pre-AD, it'd not likely to improve.

    I wish you the very best of luck in finding a solution that suits everyone. :)

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