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How do you cope with being broken hearted?

Discussion in 'I have a partner with dementia' started by maryjoan, Apr 25, 2019.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,326
    Female
    South of the Border
    I have suffered bereavement, marriage breakdown, other things that break your heart, but one tends to be able to move on from these sadnesses eventually.

    It is not the same with dementia is it?

    Everytime I think I have an angle on it all, something reminds me that I haven't. How can we possibly move on when the person that has broken our hearts, is unaware that they have done so? When you live with them, see them every day, you are constantly reminded of what you and they have lost, and that the losing carries on every day?

    Day In Day Out. Like a dripping tap. Sometimes the anguish is like tendrils of smoke or mist, that you cannot really see. You know he has diminished more today than yesterday, something he doesn't 'get' tells you, or the blank look on his face. Sometimes it is so tenuous that you cannot even give it a name.....

    'They' talk about 'Living well with Dementia' and jolly us along. But these kind hearted people don't really know, because they have not experienced what I am going through - even if their partner, parent etc has dementia - because every one is so different. And I think that is why I cannot understand this disease.

    Today it is a case of is he unwell or isn't he? He doesn't know, he thinks he is OK, but he is off his food. How can we live 2 lives? Our own, for what it is, and everything to do with our PWD? it's like trying to pat your head and rub your tummy all at the same time......
     
  2. Mrs Ozz

    Mrs Ozz Registered User

    Apr 20, 2011
    19
    Lincoln
    Oh my sentiments entirely,I can’t believe how amazing it is to hear someone’s words and thoughts about this horrible disease and to know that you’re not the only one battling on day by day, thank you so much
     
  3. Martarita

    Martarita Registered User

    May 11, 2018
    112
    OH ,maryjoan please if you get the answer to that one please let me know .My husband has been in a residential care home just a few week ,since then I've been in bed ill not seen him for two week because of my illness,I went everyday up to then , I had months and months of trying to get though each day until it got to much . Now I feel empty full of sadness and broken-hearted just as you must do. Now I've been told that he needs moving to a dementia nursing home ,they can't cater for his needs , so that was another blow , when will this anguish ever stop .so if maryjoan you ever get the answer to you question please let me know , sorry my love this probably has been any help to you My thoughts are with you take care and try to look after yourself.which I really do know how hard that is . xx
     
  4. Dosey

    Dosey Registered User

    Nov 27, 2017
    96
    Aw Margarita sorry to hear your husband has not settled well and the home can't meet his needs.
    My husband is 3 weeks into his 4 week assessment at the CH. They have already said he will be staying there which is a great relief. This is a dementia unit for under 65 , he just turned 62 on 11th. There are not many places for early onset dementia (under 65) available.
    I feel your pain, I am trying to accept this is the next chapter in this horrible situation. I have been busy with the grandchildren and visiting my husband. Worse time is in the evening when I am alone. Can't focus on anything at the moment, tv , knitting etc.
    Please look after yourself and get well soon.
    Rose x
     
  5. Dosey

    Dosey Registered User

    Nov 27, 2017
    96
    Oh Maryjoan I feel your pain. This is such a such a cruel disease. We are on a constant rollercoaster that we can't get off. It is the carer that suffers, our PWD often are not aware of their situation. I tried for 7 years to care for my beautiful husband. It took its toll on me being a carer 24/7. He didn't want anyone but me, wouldn't let our 4 sons or grandchildren near. Heartbreaking as they were all so close. OH is now in a CH since 2nd April age 62. He is settling in well considering.
    Please don't beat yourself up. You can only take each day at a time. Hopefully you are getting some help and you will get loads of support and advice on here
    Rose x
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,409
    East of England
    Oh @maryjoan you hit the nail on the head every time because my experience of dementia is the same, what a terrible disease. I had a bit of a crisis this morning trying to explain to him that a young lady from the respite care home is coming to see him because he is no longer well enough to go with me on holiday and I need a break. I put it quite gently not quite as explicit as that but he assured me that he could look after himself and was perfectly well, which drives me up the wall. What a waste of effort and anger because the irrationality is profound and yet he still has some capacity! She came and did a thorough check out of all his habits and needs which he answered as if it was two years ago. He did this and he did that etc. After half an hour he asked if he could go to bed having only been up an hour. When she left she went up and said goodbye and told him that he was going to stay where she will look after him because I needed a break and apparently he agreed with her completely! I am going to persist with the respite although it is going to be difficult to push it all through.
     
  7. Martarita

    Martarita Registered User

    May 11, 2018
    112
    Thank you for your kind words and understanding they're very much appreciated and a comfort to me , husband as I could go everyday it's not far from where we live ,and then another blow for me to deal with, a new care home as he needs more care now just after a few short weeks , I too can't focus on anything everything is just going through my mind , if onlys and I should have done this or why did I have to let this happen.I miss him so much but I just can't do anything to help him now only to go and see him hold his hand and love him ,but he's well cared for my days was full of caring aways very busy ,and now nothing . although my family are really good and very supportive, I hope it'll get easier but it just takes time so everybody tells me it can't get any harder I'm finding it really hard to come to terms with as you must be . I'm trying to get my strength back and my head together and deal with what has happened to us because of that horrible horrible disease , So thank so much for your kindness .Look afte yourself.Take Care xx
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,429
    Mary, if you find an answer you will make a fortune!
    Just seen a letter from Andrea Leadsom saying social care is not about throwing money at the problem. Well, proper funding would help!
    A green paper is on its way, it it is the first piece of green paper promised on social care it will be curling at the edges.
     
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,326
    Female
    South of the Border
    I would like to see Andrea Leadsom's letter - if Social Care is not about throwing money at the problem - and they certainly DON'T throw money - what is it supposed to be about? Us carers quietly going mad with grief and frustration and loss....?
     
  10. vmmh

    vmmh Registered User

    Jun 25, 2018
    71
    My thoughts exactly Maryjoan - I think out of everything I have been through with my OH the heartbreak is the worst! And it never stops.
     
  11. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
     
  12. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
    Mary Joan,
    Your words could not have hit a more truer note for me today.
    Mum is 84 ..moderate AD and my hubby and I have noticed such a change these last few weeks.
    Dad died end of Oct 2018 and I became main carer with care coming in 3 x day.
    She self funds and I always promised myself I would be able to keep her at home with a live in carer but to be very honest I think this will be totally unrealistic.
    She had a UTI few weeks ago and since then we've noticed such a change in her behaviour and conversation.
    She can be delusional, talking to herself,quite rational..it's just a day to day change to live and watch.
    She's been to day centre today and came back with such a story which has continued each time I've been up to see her and constantly asks 'how dad is'.
    We've not grieved for dad as we have to try and be matter of fact each time she asks about him..if I'm not il just break my heart.
    I've only been doing this for 6months but already know that it's affecting me,my hubby and our relationship and mine and mums relationship.
    I've come home tonight in tears for the mum I'm losing,the relationship that's going, the stress it's causing,the guilt I'm feeling and any other emotion I can think of.
    I've started looking at care homes ,as I really think that despite all the professionals saying that keeping her in her own home will be best they don't have to deal with it daily.
    This is the most cruel disease for our LO ,and to watch it destroy relationships continues to destroy me.
    Sorry for the long txt but so pleased that this site is available for us.
    Much love to all the caring angels out there.
     
  13. lis66

    lis66 Registered User

    Aug 7, 2015
    261
    Hi Mary Joan sending hugs to you and joy 1960, my mum has had AD for six years ,has progressed the last two I'm her main carer,and it's truly total heartbreaking, illness,I've cried many many times for me and for mum ,the grief consumes you xx
     
  14. Lawson58

    Lawson58 Registered User

    I have come to the conclusion that what you are talking about is the really one defining thing about dementia and it is the one thing no one can tell you about. If the person you were caring for had cancer, the conversation would be completely different but no one, in spite of how much they tell you they know about dementia (including Living well with dementias) can have that same conversation about dementia.. Simply the number of people living into old age with dementia is outstripping what people think they know or believe about the disease. Most of them are trying ha d to find 'cures' or treatment for dementia but somehow lhey don't really know what they are talking about,
     
  15. patbryn

    patbryn Registered User

    Mar 22, 2019
    81
    Male
    Wales
    #15 patbryn, Apr 27, 2019
    Last edited: Apr 27, 2019
    I hit hot rock bottom about six months ago, mum has AD and vascular and the dementia had taken a jump. even now I feel tearful if I let myself feel that way, in my case and only my case because I cant speak for anyone else I realized I was feeling sad, sorry for myself and my own feelings rather than mum's, after all she is the one that's ill not me. I cant change anything for mum but I can change the way I feel and deal with 'life' but its a steep learning curve.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,409
    East of England
    My daughter and I often discuss this and realise that it is us who have to bear the knowledge and pain of his disease while he is contented provided he has a stress free quiet life. When this desire bumps up against real life is when he is unhappy because he is one of the sufferers who are in denial about their situation. This conflict between what he believes and what we know to be reality is so painful but we are well and have to bear it.
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,326
    Female
    South of the Border
    You are so right - this is exactly how I feel. He is contented and happy most of the time, he certainly has no stress whatsoever - but I am doing this alone, and it is so very lonely. I feel I am living a lie for him. He thinks there is nothing wrong with him, and I am working very hard for all to be well for him - but it is all a lie, because I live with the knowledge of what it really is. I have seen the phrase 'love lies' and I suppose it is - but it is a false reality that we, the carers, carry the burden for....
     
  18. patbryn

    patbryn Registered User

    Mar 22, 2019
    81
    Male
    Wales
    I know this may sound daft? but you cant make all well for him, none of us can do that, we cant do everything so its best to step back, some of the best advice I was given was 'you cant do it all so don't even try' and it is the best way for us carers
    take care
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,326
    Female
    South of the Border
    I don't try and do it all - I agree, we have to step back. I think I have put in place as many activities as he wants, and I take care of everything household related. I let him make mistakes, but I am often sorting things out with other people after him.
    I carry on working from home, and have now convinced myself that, with as much as can be in place at this stage of his dementia, I now live alone - that's the best place to be in my mind. Expect no interaction, no caring, no responses no nothing - and just bumble along with my own life, whilst still holding the steering wheel in check that keeps his life on track......
     
  20. patbryn

    patbryn Registered User

    Mar 22, 2019
    81
    Male
    Wales
    Churchill used to say KBO, keep buggering on, that's all we can do
     

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