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Who has stolen my husband?

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

  1. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    Central Scotland
    I came on here tonight to start a thread, then found this one, which says everything I was going to say.
    I feel as if I am a grieving widow whose dearly loved husband has gone and been replaced by a grumpy, awkward, demanding stranger/lodger who cares not a whit about me, how I am feeling, or what I might prefer. Tonight for the first time in our 50+ years of marriage, I served him the fatty piece of pork (he hates fat) and kept the bigger leaner piece for myself. I cannot see the point anymore of serving HIS favourite foods and watching HIS favourite TV shows rather than mine, when he moans about them anyway.
  2. AliceA

    AliceA Registered User

    May 27, 2016
    I think I am lucky in some ways. I was warned by the memory nurse that lack of empathy is what I would have to expect. I read lately that empathy uses advanced cognitive skills and these are first to decline, so to expect is like expecting a legless man to walk.
    It is was still a shock because incidents catch me unawares, when I am tired. I have serious health issues so I do miss not being looked after and cared for as in the past.
    If I say I am tired I hear back how tired he is.
    I have stopped, well almost, expecting.
    Loving gestures are often a need for reassurance. In my heart I know it is the condition not personal but even so it feels very personal. It hurts, I grieve, I know about grief, so I try to care for myself.
    As my carers assessor said tell yourself what you would tell others. I understand but it still hurts. Understanding is just not enough, perhaps it helps, how can I be sure? My rug has been snatched I feel I walk on quick sand.

    We met and married after a whirlwind romance, we did get a retirement time when we shared interests and took on outside projects.
    Now as a lone carer, it is very lonely.
    My physical abilitity is poorer, my age is seldom taken into account. I would love an easier time. My tiredness is a major enemy in the scheme of things. I cannot like many of you also, leave him unattended.
    He only wants me, I have only wanted him. Although we lived independent lives we were two sides of one coin. We watched each other's back.
    Now I spin to watch both backs. I am getting forgetful if distracted, a GP dismissed my concern as 'holding everything together'.
    So what to do, I slow down so I act rather than react. It works when I am not tired. I apologise when I am a bit sharp with a repeated answer.
    I try to honour the love we shared, the life we had. I am grateful he is still here so many friends have now gone.
    I am grateful for the kindness of strangers. A cheerful exchange with delivery person brightens a dull day.
    My remaining few friends with struggles of their own, we cannot meet up but we have contact.
    I am very grateful that there is this place where we can express ourselves.
    An old homeopath used to say, better out than in. She referred to the healing sign of a rash!
    Perhaps the same for feelings as well, bringing thoughts out eases deeper thoughts we cannot access.
    I constantly remind myself the only change we have control over is our attitude, I smile ruefully, it is such hard work.
    Creating a calm loving atmosphere is like oil on rough water, some times it works, sometimes it doesn't!
    Thanks for listening to these ramblings.
    I have always had a strong faith, when the children were small I felt they had been given for me to care for I did not own them, I feel I am in a similar place.
    I had a yoga friend who once said to truly care it takes three Cs.
    Cool, Compassionate, Care. Very Zen perhaps.
    I read last night that Lifesavers are taught to detach emotionally, just enough to just do the job.
    Not at all easy but if it gets us though another chore it is worth a try.
    I should sleep again before the real day starts.
    Enough unto the day. ❤️X
  3. Manc70

    Manc70 Registered User

    May 30, 2018
    S. Yorkshire
    Hi B, so many replies from lovely people to your thread strike a cord with me, I want to shout yes yes that’s just what it’s like to live this life with someone you love who has this awful disease. I find the whole of TP a comfort, knowing we are not alone. The business of other people seeing him in a different light is so hard but at the same time I don’t want our kids burdened as they have busy lives - although I know they are there for us. My OH can go from looking like someone I don’t recognise, confused, hunched over, shuffling etc etc to ‘almost’ the perfect host if one of the kids calls round. I know it takes it out of him and he usually then goes to bed and sleeps and sleeps (a nice respite for me although I darent go out as he can wake up very confused) - but nobody sees our life as it is most of the time. I have to be fair and say although I can trace a change in him to a few years back he is still fairly newly diagnosed and we do still manage with the help of medication to have a few so called normal times but that can change at the drop of a hat. I think you’ve said before it’s such a rollercoaster of emotions. I feel drawn to your posts and am truly wishing you some peace and hope your plans for your procedure are going ok. Wish me luck, I have a much needed appt at the hairdressers then get back to take him for a haircut but at the moment he has gone back to bed and I need to make sure he has something to eat and meds before I go out in about half an hour. All sounds so trivial when I know what some people on here have to cope with, including yourself, but the anxiety levels never seem to come down. Sorry for rambling on. Thinking about you, love S xx
  4. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hi S
    It’s true that some people’s posts just ring a bell and everything you have written I relate to.
    I manage to get to the hairdresser. But I’ve had to change to one at the bottom of the street, so I can be home quicker. I look like worzel gummidge by the time I go, I leave it that long!
    It’s like they (husband not hairdresser) are two total opposites. He has finished his antibiotics and he has calmed down, only a couple of angry outbursts yesterday. And I’m beginning to use the word sundowning, as there is little doubt that he goes off on one at night! Trouble is, with his incontinence, I can’t not be on hand, literally, every minute.
    I have no idea what stage my husband is at. Sometimes I look at him and think there’s nothing wrong, then it’s like a black mist descends and I want to hate him, I’d say kill but I don’t want the police banging on the door. But I can’t hate him, because as soon as that happens I feel guilty as hell, and I know he still loves me even though it’s not obvious anymore. Gosh, I’m rambling....
    I hope you manage the hairdresser’s today and it gives you a lift. And you get your husband to the hairdresser to.
    I see the surgeon on the 2 November. Should have been this Thursday. I’m in so much pain, getting up from a chair and on the stairs. Never thought I would consider a stair lift, but pride is nonexistent!!
    It’s lovely to talk to you. I feel we have so much in common.
    Take care, love Barbara xx
  5. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hi @AliceA
    Your post is so interesting, informative, supportive, helpful... I could go on, but some of the things you said really hit home with me. Especially when you talk about two sides of a coin. That is a perfect way to describe my husband and I. I have always explained to people that we have been very insular, never needing anyone else, doing everything together. Yes, we both worked, but other than that we were inseparable. And oh how I miss that.
    How true that he doesn’t consider me now. It’s like I don’t really exist in his mind. He does sometimes say let me do that, and I do, like empty the dishwasher. But I want him to really feel for me, love me, like he used to.... such a short time ago.
    I too struggle to sleep, but I listen to my sad songs on my iPod and and have a quiet sob, and I do eventually get off to sleep. It’s like I can’t go to sleep unless I have had a cry, perhaps I’m just feeling sorry for myself!
    I’m trying to come to terms with the death of my friend of 52 years. She had so very few worldly goods, but she would have given me her last penny. She would always remember things happening in my life and comfort and support me. But she has gone, and left a hole that can never be filled.
    Thank you for your post... I hope you managed to rest and get some sleep.
    take care
    Love B xx
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    It is the lack of empathy and expressions of love I miss the most. I feel like a servant when it seems not long ago that we were lovers.

    He is away til Thursday - and I wish it was longer - I need to recharge. He phoned this morning, and sounds like the person I fell in love with - but I know that is the 'hosting' mode.

    Perhaps this will make you laugh ( or grimace)

    I thought I would let him pack his own stuff yesterday - just, I suppose, to see where he was at.
    He packed his bowling woods - he says he is going bowling with daughter - might be - but she told him you can hire woods. Have you ever felt how heavy 1 wood is? let alone 4???
    OK he has his woods, he also packed a plug in electric clock from his bedroom- he has his watch and phone with him.
    He packed 2 empty plastic bottles for the diluting juice palaver
    He packed 1 largish plastic jug also for the diluting juice palaver.
    He packed 1 bottle diluting juice - in case son doesn't have any
    He packed 1 bottle Horlicks - also in case son doesn't have any

    Very large suitcase now not closing happily - so when I asked if he had everything - he said he could manage without anything he might have forgotten.

    I asked him if he had packed his " Stoma kit" - absolutely essential, I would have thought - but NO he had not !
    Insists this all goes in a cardboard box - suitcase now protesting very loudly.

    He rang this morning to say he had forgotten all his underwear, and his shirts, so his son was taking him to buy some!!!!

    Oh well, I am happy to let his son cope for a couple of days !!!!
  7. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    New South Wales Australia
    I am scared of uti's The doctor gave me a prescription for antibiotics so if it happens I can get onto it straight away - I also have some test kit to check him - but we have been OK for many months now - the UTI causes delerium which makes the dementia much worse - and takes a while to clear - maybe 6 months in his case - so you will be getting a great overload of delerium. There are some drinks to help keep the urinary tract clear - but I can see in your case it's hugely difficult - I hope you have a break soon! Best wishes for you - mud-joy X
  8. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hi @Wifenotcarer
    I can really understand the feeling of a grieving widow. My husband is all those things you mentioned. It’s like we carers/wives/whatever are a clan of like minded people who are suffering lives we are not trained for, nor do we want. And yes I use the word suffering. Some might argue this word. But I’m suffering....
    I’m thinking about you, keep in touch...
    B xx
  9. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hi @Mudgee Joy
    Thank you for your post. Yes, infections terrify me to. When he came home from his first stents he was brewing an infection. He was so poorly, confused, delirious. He was rushed back in with sepsis, and for weeks he was really ill. His dementia was diagnosed post all this trauma, but I think he has had dementia for possibly a couple of years. Who knows, and I guess I will never know. But I’m paranoid now, trying to get urine samples if I think an infection might be happening.
    With all his problems life is a lottery. I just know that it is a lottery I will never win.
    Take care, Bxx
  10. kindred

    kindred Registered User

    Apr 8, 2018
    Of course it's suffering, what else could it be? Thank you with all heart for telling it like it is. It's mental anguish and all we can do about thinking creatively about it isn't much good. As you know, my way of coping is the get in there and join the staff in Keith's home. But when I was on my own with him for so many years, and so severe, it was traumatic and diabolical suffering and I used to wonder what I had done to deserve it. I hope I can be a fully functioning human being again one day, but doubt it sometimes. I have to contain my anxiety all the time, especially as am a mental health professional. Thank you with all my heart. With love and best, Kindred.xxx
  11. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hi Geraldine
    Your words are always pertinent and profound, always so helpful. Thank you. I hear what you say about one day hoping to be a fully functioning human being again. I’m sitting here, we are having a quiet half hour, and I’m thinking about your words. I don’t think I will ever be me again, I’ve gone somewhere, not sure where, but I don’t exist as the Barbara that I and others know. Yes, I can put on a brave face, but my interactions with others are now so limited that I spend all my time caring for, watching over, managing him, there is so little left.
    So little of me left for me.
    I’m not sure where I have gone, but sadly I don’t think there is any future. And what future there is... well, do I want it?
    I would like to just have something to look forward to. It’s so long since I looked forward to anything.
    I’m sick of being such a misery.
    But saying all of the above, it is lovely to hear from you and to talk with you, and I do hope that your visit with your lovely Keith was a good one today.
    Thank you Geraldine, love Barbara xx
  12. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    Oh Sad Staffs everything you say describes my life, I just don't have anything to look forward to any more, it's been 3 years since I had a holiday, I can't go anywhere without OH, if I go in the kitchen he follows me, if I go into the garden he follows me, if I go to the toilet after a few minutes he comes looking for me. I also struggle to sleep on the other hand OH is asleep minutes after getting into bed and him snoring doesn't help. Well enough moaning before I go something to make you smile, yesterday I asked OH to put the bin out and I have to watch him to make sure he puts the right one out also to make sure he doesn't wander off, as he was pushing the bin down the drive I thought he looked strange and then I realised he had his trousers on back to front and when I mentioned it to him he had no idea what I was talking about:eek:. Just as well I noticed before we went into town(again). Take care Lxx
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    I’m exactly the same. I look at early photos, photos that show a woman full of life, someone who would delight in beating me at scrabble and would organise Christmas. She would independently drive halfway across country to see someone. She was a teacher of teachers and now she can’t understand snakes and ladders! Where did my rock and comfort go and leave me to manage everything. My old wife is gone and memories aren’t sufficient enough to fill the gap. Sometimes I feel that I’m just feeling sorry for myself and I should be strong but few of us are natural Carers and it’s absolutely natural to want the old person back. After all, we had plans, we had things we wanted to do together and alone, but all that has been taken away so, sod it, why shouldn’t we feel angry. If it’s any help I can recommend a book called ‘the selfish pigs guide to caring’ ( on Amazon) which tells it like it is by a carer and dumps all the platitudes for straight advice and help. Let me know. Loving kindness for you.
  14. Starbright

    Starbright Registered User

    Apr 8, 2018
    All of what has been said resonates with me, but like @canary i don’t care if I have to do everything because I always have, what I do miss so terribly is tenderness, him caring how tired I am, being able to Just Be in each other’s company. There’s no empathy anymore, oh I coul go on but what’s the point it’s a vile, nasty, greedy selfish disease that has eaten up the love of my life. But he’s in there somewhere if only I could find him.
    A x
  15. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    New South Wales Australia
    Hello all - I agree with you all but I have had a few breaks . We just had a "holiday" recently . I took my husband and his daughter - we managed quite well- only a few scary times - like when he went into the hotel lobby in undies looking for bathroom - he had just walked past it.
    Today I was tearful - I think it's some sort of biorhythm problem - sometimes I'm tough and can get by fine and others I can't ?? Today I cried because I couldn't get my OH to put sensible clothes on- we went out to lunch in 30 degree heat and he wore his winter coat. And this afternoon he offered to help mow the lawn!, - I let him for a few minutes and he mowed down my little herb garden -I still feel tearful. But we are stuck - and just have to cope. Tomorrow he has a carer take him out for 4 hours - so I get some good respite. Barbara X
  16. vmmh

    vmmh Registered User

    Jun 25, 2018
    To all that have written above, I can definitely relate to all you have said. My OH just turned 63 years old. I baked him a cake and wished him a happy birthday. But in fact, he has no idea how old he is or what day it is, and most of the time has no idea who I am. We went through the confusion stage, the confrontational argumentative stage, the loss of interest stage, then the loss of meaningful speech stage and are not in the incontinent stage, inability to walk stage, difficulty eating stage. It now requires two caregivers to stand him up and place on the portable commode. BUT, he is at home, he smiles, and once in a great while he will look at me as if he knows who I am and will kiss me back. I too wish I knew who stole him away from me. The same "person" has ripped half of my heart out of my chest and reduced me to tears every day. It's mean, its cruel, it's VERY lonely, and if there is any meaning to it, it escapes me. No one around me truly understands what we are going through. They are concerned and supportive but they cannot understand the depth of despair we here on TP feel. It is truly a blessing to have this forum. Please keep posting even though reading the posts generates even more tears. Do we ever run out...
  17. yorkie1432

    yorkie1432 Registered User

    Mar 27, 2012
    sad staffs. You thoughts are the same as mine. Didn't know how much more I could cope with. Then today after a week of being miss my hubby called my name & all the years just fell away & I had the biggest smile ever.. Stay strong because they are still with us.xx
  18. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    Totally agree with that
  19. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    We all find this site helpful as our position is one of the loneliest places to be, friends think he looks fine but don’t know what the earl situation is like. We all have bouts of tears and feeling guilty for our shortness at times but we are only human. I too miss the cuddles but I find that most nights his hand looks for mine in bed so that to me means he stills has feelings for me. I am lucky that he appreciates what I do for him and that means a lot. We still manage to get out most days but not doing as much as we did this time last year. I M thankful that this horrible illness did not appear until he was 8 years old and after almost sixty years of marriage. I am thankful for what we still have despite the down times. Thank you all for this page.
  20. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    Hello Dutchman
    Thank you for your post. I can relate to all you say. It’s the blank, mostly empty look on his face that I find so hard. My husband was in advertising. He hated his job because of the pressure, never a people person, but now....
    You are right that memories aren’t enough, but my memories are mostly happy, my life now isn’t. I can’t imagine ever laughing like I used to. Someone once called me ebullient. I had to look it up! I thought he was being unkind! But I’m not ebullient anymore.
    You are entitled to feel sorry for yourself. I do. Like you I get angry that life has dealt me this hand.
    We worked hard, made provisions for our retirement so that we could live the same sort of life that we had when working. Now I’m spending it on incontinence pads by the ton, getting changes made to hard floors, paying for him to be looked after when I go into hospital, etc etc.
    Life will never be the same, but we can’t change it, but I don’t want to get on with it either....
    I will look for the book, thank you, keep in touch.
    Take care, thinking of you, love B xx

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