Husband in care.....how do I cope

Discussion in 'ARCHIVE FORUM: Support discussions' started by Bastan, Feb 14, 2011.

  1. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    #21 Loopiloo, Feb 15, 2011
    Last edited: Feb 16, 2011
    Dear Bastan

    .

    Well as you can see, many of us did and will stay and have been or are approaching where you are and have, or do, feel just as you do.

    My husband is presently in hospital 12 weeks, and I now know he will never come home. I am struggling to believe this is happening, that he has to go into a care home.

    Yes it is like a living bereavement. Your words echo my present feelings and as you can read, those of many others here.

    They have survived the painful battle, and you will, as I hope I do too. Also others who are at this point on the ever changing dementia road.

    Like you I wish I had found TP years ago. There are no words to express how I feel about TP, how much I have learned from others here, and the wonderful caring support I have received.

    Keep writing, it helps, and you too will benefit so much from all that is here and so kindly given from others who truly do understand.

    But it is hard. Difficult beyond words to accept. I empathise with you and everyone else in this situation, and everyone who has gone through this. I think you are right, the key is learning to accept.

    Love
    Loo xx
     
  2. Melanne

    Melanne Registered User

    Jun 24, 2008
    4
    Sydney
    Hi Bastan

    Have you talked to your doctor about how you are feeling?
    You seem to be suffering from depression which is completely understandable
    Maybe your doctor will prescribe something to help in the short term. Or maybe he/she knows of a support group you can join locally

    you must be quite young. do you work? if you haven't got work to throw your self into maybe you could think of doing some voluntary work, joining a local club, taking up painting or something you have always wanted to do.

    I found moving my focus away from the whole issue hard but worked eventually and i made new friends
    good luck
     
  3. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    #23 Bastan, Feb 16, 2011
    Last edited: Feb 17, 2011
    Gosh I am so overwhelmed by all the responses. Thank you all so much for your advice and words of support and for sharing your experiences. It is shocking and sad that so many people are suffering this cruel disease which affects the whole family and brings us carers to our knees.

    Melanne, I have suffered from depression for the past 2 yrs and have been taking medication for the last 18 months. I retired from foster caring 10 months into my hubby's diagnosis and cared for him full time until Sept when he went into care. I am 55 and still feel robbed of our fifties. I have toyed with the idea of getting a job but I know I am not ready. It takes every ounce of strength I possess to get dressed in time to visit the home and feed my husband his tea. (pity pot sounding, but that's just where I am right now).

    I want to say so much more but can't quite find the words. To all of you that say my story echo's yours, some of you not this far on, some of you right here now and some of you further down the road, bless you all for taking time out to share with me. You seem an amazing bunch of people
    Love Bastan xx
     
  4. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    An other day an other dollar, what ever that means!!!

    As I sat in the care home this evening, and looked at my dh with food dried and stuck to his jumper, it saddened me. As he can kick off when getting changed, the battle in my head started. 'Change him, he looks disgusting,'.....'but is he bothered?'.....'are you changing him for you or him?'......
    'just sponge him down'......Oh how I wish this disease had not stolen him.

    I looked into his vacant eyes, the ones that used to sparkle. And I asked him where he'd gone. I asked him to come back to me. He covered his face with his hands and laughed. He laughed like a naughty boy. I laughed with him but inside I hurt. There is a void in my heart...........how I wish this disease had not stolen him. xx
     
  5. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    7,188
    Female
    South Ribble
    Hi Bastan

    I am familiar with the bittersweet moments you describe so eloquently in your posts when I see glimpses of the mum I knew before dementia took hold of her.

    I am just wondering if you have heard of John Suchet's book about his beloved wife Bonnie? He has described on the radio his feelings of a "living bereavement".

    I just thought I would mention it. You have a lot of support and friendship here, and TP has been a lifeline to me.

    I hope you find some peace of mind soon xx:)
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,578
    Female
    Dundee
    I hope so too Bastan. x
     
  7. crazychick

    crazychick Registered User

    Feb 18, 2011
    9
    portsmouth hants
    Just wanted to say hello.
    I really do take my hat off to you and how you have coped.
    Give yourself time to readjust (I know its easier said than done)
    Recharge your batteries
    Things will become easier for you
    Sending you a big fat hug xx
     
  8. sadness

    sadness Registered User

    Mar 7, 2009
    10
    chatham kent
    hi loopiloo did your husband have vascular dementia an how long before you noticed bi

    did he suffer with severe headaches
     
  9. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    Hello TP ers,

    Just been re-reading your replies, and wanted to say thanks again for support, hugs and advice.

    Bronwen I was wondering how it is for you now, having brought Trevor home. I have just written and realized as lonely and upset as I am, I couldn't keep up that level of care if my own life depended on it. I hate what has happened to us and how it has ended up. But I now know if I brought him home (which I have contemplated almost daily) I'd be signing our death warrants......Guess I'm trying to say if it doesn't work out, at least you tried. Good on you.

    Thank you Loo for your advice and sharing your painful experience.

    Piedwarbler thanks for your kind words and yes I have got the book. John Suchet was at our Admiral Nurses Christmas dinner to give a talk and promote his book. My friend bought a copy and has passed it to me, I will get round to reading it soon.

    Susiesue your husband is young too, I couldn't tell if he is still at home or in care. Thanks for your message.

    Merlin, what a lovely husband you are. I go pm too, I feed him and we walk the corridors and spend time in his room. He stopped getting ready for bed about two years ago as any change of clothes is distressing to him. And he is likely to land you a punch or push you over. (bless) Pot luck with teeth cleaning to, give him the brush he'll clean the mirror, try to clean them for him and he'll either co-operate or swear at you. I've even ended up against the wall with his hands around my throat. (never a dull moment). He had a longer beard than Santa at one point, for the same reason. Thank God he has allowed 2 chaps and our eldest daughter to shave him recently.:)

    Muriel your post made me cry, please don't hate yourself, you have done nothing wrong. I like you have wished many times for the release of death, that doesn't mean we don't love our husbands, it proves we do. I hope you have found a suitable home for Bryan nd you can let him go. My daughters took their dad in as I couldn't face it, and asked me not to visit for two days as they knew I would just bring him straight home. Good luck.

    Sorry to anyone not answered, can't seem to go back to beginning.

    love Bastan. xxx
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hello Bastan.

    Never mind about the house being a mess. Mine is a mess and there is no-one ill here any more. We just sort of got used to it being a mess.

    Glad you like a joke. When mum first entered the care home, on our first visit we were in the communal lounge. A man and woman were sitting together, in front of the table with the daily newspapers. The man said, it that todays paper? The woman got up and looked and said "it says Monday". The man said "What day is it today" and she said "Wednesday" (it was Tuesday) and he said "Oh, that must be tomorrow's paper then".

    Love

    Margaret
     
  11. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    Oh Margaret, that's just what I needed,thank you.

    I've just posted a new member and told her I can come to the site sad and end up laughing. And that's just what happened now. It's our 37th wedding anniversary today and I'm in my pity pot, no card, no flowers and no meal out. Of course I could buy them for myself but it's not quite the same. I could say on the plus side no row! however I'd give anything for a good old ding dong like the old days.

    My friends and I often say you couldn't write this stuff. One of them said we could suggest 'Dementia in the Big Brother House' and have a instant hit on our hands. Hope nobody takes offence at this, it's just a mechanism for coping.

    Is your loved one now in care?

    Bastan xxx
     
  12. milly123

    milly123 Registered User

    Mar 15, 2009
    896
    England
    hello bastan my husband has been in a nursing home 18months he wandered out of the hospital where he had gone to have his cateracts op we left him at the hospital at9 oclock in the morning 1hr later he walked out he aws found at 3 30 2miles away on the canal bank someone saw him staring at the water and saw he was wearing a hospital tag on his wrist this was feb 2002 that was the first time the next 8yrs was like living in a fortruos doors and gate locked he even took the fence panel out and went he is settled in the nh now but cant walk or talk and doesnt reconise anyone it still take three carers to dress and shower him i miss him at home but like many others he started to get voilent and it was hard at first visiting but now he is content and safe im just off now to give him his dinner i feel now that the time i spend with him is quality time .hope you feel better soon abig hug from me milly
     
  13. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Sorry, sadness, just caught up with you. No, my husband didn't have headaches and yes he does have vascular dementia. He was diagnosed February 2007 but it had been creeping up on him a few years before then. At least 3 years before, maybe more.

    Loo xx
     
  14. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    That's just what I have done! Your words made me laugh! I bet it would be an instant hit!

    Also hope no one takes offence, but sometimes if you didn't laugh you'd drown in an avalanche of tears.

    Loo xx
     
  15. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Bastan

    I've just read your post and the replies. I'm going through a similar thing as you in terms of "what do I do now?" I too feel like I'm grieving for someone who isn't dead.

    My mum has been in care for two weeks. When the men came to clear her flat out a few weeks ago and shifted the cooker, I saw something roll out from underneath it. It looked like a roast potato. I pondered how long it had been there. I now look and feel like that old roastie!

    I loved that you said there'd be no rows on your wedding anniversiary... Keep up your Mancunian humour girl. Mine has kept me going.

    x
     
  16. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    Wedding Anniversary turned out well. Took grandkids to cinema to see Yogi Bear, was dreading it, but I found myself laughing out loud more than they did. It really lifted my spirits.

    Next stop CH, took cakes to celebrate, the grandchildren were messy and noisy but S didn't get mad or even raise his voice at them. Wow!!!
    My son arrived with flowers and chocs and a card from his Dad for me. Unbeknown to me the 3 of them had decided to buy them, even though I'd said I didn't want anything. It really meant a lot and I left a happy bunny.

    Loo so glad you had a laugh and what a wonderfully true expression "if you didn't laugh you'd drown in an avalanche of tears"

    Lucille it's very early days for you. Who'd ever believe we could miss our loved ones so much when they (their illness) drove us to distraction and brought us to our knees. I've got some old 'roasties' sat on top of my stove right now (please don't ask) and I keep smiling at your description of yourself.
    Not that I think how you feel is anything to smile about, I understand totally. It's hard I know.
    Is your sense of humour from Manchester also?

    Millie it amazes me how the similarities run through these pages. My hubby wasn't quite as good at escaping as yours but one day he'd gone for a lie down. A very rare, but most welcome event, I decided to take advantage and enjoy a coffee and read a magazine. Kept thinking 'must check on him' but was enjoying the break so much kept deciding 'just a few minutes more'. Rudely interrupted by a loud knock on the door, I remembered the district nurse was coming to change beloved's catheter. When I went to get him up, no sign whatsoever, the so and so had got out, (My fault, I'd left the key in the door). Took some explaining and I felt like the worst carer in the world. Found him wandering locally none the worst but too late for the nurse!
    I am sorry your husband has deteriorated so much, it is such a sad and hard disease. I like that you at last, share quality time, I hope that day comes for me too. Take care.

    Bastan xxx
     
  17. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Good to read the Wedding Anniversary turned out so well, Bastan. Also that, earlier, Yogi Bear made you laugh and lifted your spirits. Laughter can be a tonic.

    How true. I find that the awful, terrible times over the years, the non-life we were leading, seem to have gone to the back of my mind (except the glimpes on bad visiting days) and the love has come to the surface. Before Henry's fall and hospital since November, there were times when it was very difficult to feel loving. I wouldn't let myself dwell on past happier times because it was too painful. Now more and more I am recalling them. Yet at the same time grieving.

    Milly I have just re-read your post again:

    Encouraging to read that your husband is now content, and you spend quality time with him. I wistfully hope it works out that way for us when my husband does move from hospital to a care home. But I just still cannot come to terms with this move, no matter how hard I try. One day I feel I am accepting it, the next ...

    Loo xx
     
  18. chucky

    chucky Registered User

    Feb 17, 2011
    968
    UK
    hi bastan

    So sad to hear your story, but like many others here, all too familiar. Im much further down the road with my dad, its been 5 long years now and he has been in CH for two and a half. The road is long and very weary and you will experience things that will make you sad, angry, shocked, despair,guilty,just about every emotion possible. My dad was (and still is at times) a nightmare but i battled on alone without help and it broke me down bit by bit till i couldnt function. I was such a mess emotionally, financially, my house was a tip, i had no social life, lost my job, my house,even declared bankrupt having no income, it was bad. I did it all because i loved my dad and thought it was my duty to look after him. I was too proud to ask for help. Would i do it again, NEVER IN A MILLION YEARS, am i sorry i did it,NO.I was doing what my heart told me to do. A mothers love for a child is unconditional and now the roles are reversed, im the parent and hes the child. My long and winded point is, the journey is long, hard very tiring and emotionally draining so you do what you have to do. They are living "in the moment" so i leared to live the same way. You will find courage and strentgh you didnt know you had, and with help (and a massive supply of tissues) you get through it. I wish i had the courage to join the forum 5 years ago when i was at my lowest, it has really helped and im sure you will find it helpful too. My thoughts are with you xx
     
  19. Bastan

    Bastan Registered User

    Feb 10, 2011
    483
    Manchester
    Thank you Chucky for sharing your story, you have been through so much. This disease has cost you dearly and I'm sorry you have lost so much. None of this is easy for any of us, is it. I agree with living in the moment, I've been trying to do that on and off for yrs.

    I'm feeling sad tonight, and thinking ahead. I'll be 56 on Monday and all that keeps running through my mind is.....my God is this it for the rest of our lives, him in care, me sat in with the laptop, TV and chocolate. Now 10st overweight, eating myself to death.

    I need to make a life but don't know where to begin. I fear I am one of life's odd bods and cannot find a niche to fit into.......

    Bastan xx
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,544
    Kent
    Enter your birthday on the calendar Bastan and join the celebrations with two other TP members on Monday.
    It`s not the same but it`s better than nothing.
     

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