1. Sarav

    Sarav Registered User

    Jul 26, 2015
    My husband was diagnosed with Alzheimers three years ago at age 90. Until the middle of last year I was managing ok but realised I needed more help as incontinence was a problem at night caused by mobility. many wet floors, bed etc. I'm in my latish 70's so was getting so tired. In the middle of August my husband who was attending a charity time out for carers day had a stroke and was rushed to hospital. 24 hours later I was told to take him home as he did not need to be in hospital. He had been walking with the aid of a stick, now needed a frame could not wash, dress,shower in fact all the things he had been able to do albeit with help from me. My stepdaughter who lives in the west country came to help after a week when I was at my wits end. Even with two of us it was really hard. Regrettably we had to make the most awful decision about care. Live in care was totally impractical as well as expensive. He has settled very well into the second home, yes, we had to move him as the care he was receiving was totally inadequate. Now he seems happy is eating well and recognises me still which is a huge relief for me. My main problem is the guilt, I've let him down and miss him so much. We have been married for 43 years and have had so many happy times together. I keep telling myself I am lucky to have had such a wonderful husband for such a long time but how do you ever get over the emptiness. I only visit three times now I usually fall apart when I get home to think I've left him behind and he is never coming home. Does it ever get any better? I know he is getting really good care and does seem happy but I am the one who should be doing the caring.Sorry this is so long, I have wanted to post for a long time.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hello Sarav and welcome to TP.

    I'm sorry you and your husband have had to face all of this. I'm glad that he seems to be settled and well cared for though. I'm afraid I don't have experience to answer your question but I know other members will have. I'm sure they'll be along soon.

    Take care.
  3. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Sarav, that old thing we know here as the Guilt Monster has come to visit you. Kick it out, my friend. Never forget the days; weeks; months and years of caring you have put in. It's only fair that others help share the burden as it is very hard work.

    It's good advice I've often read here that you can now spend your time having quality time visits with your loved one and your nerves are no longer stretched to breaking point. Just enjoy your visits and remember that the love that was between you still exists as you're still giving it.

    Much love and courage to you, xxx
  4. gringo

    gringo Registered User

    Feb 1, 2012
    Welcome to TP. Sarav.
    I’m sorry to say that I have no easy words of comfort for you. If you’ve had a happy life together, the empty feeling will always stay with you. I’m afraid that’s the price you have to pay for ensuring that he is being well-looked after. I fear you have to accept, and you will learn to live with it.
    Above all remember your role is still vital. His well-being depends on your vigilance.
    My wife has been in care for over three years, and I still struggle. Our 62nd. wedding anniversary was last week.
  5. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    O dear, Sarav - the guilt. Speaking personally, I would say it never leaves you but it does get squeezed out sometimes by all the other stuff that comes along.

    I fully understand how you must be feeling. My husband was rushed into hospital with a sore on his foot, expecting to be in only overnight and ended up having an upper thigh amputation, due to his Peripheral Artery disease, and never returning home again.
    He was 3 months in the acute hospital, followed by nerly 6 months in the community hodpital for mental health where it was decided, against my wishes, that he would be better cared for in a nursing home.The guilt has never left me even though he died just over a year ago after being in the nursing home for 3 years. We 'celebrated' out golden wedding 2 months after he arrived there but by this time his awareness had deteriorated so much that he knew nothing about it.

    I can still hear his plea to come home when in the hospital and though I argued and protested, it didn't make any difference as the minds of the professionals were made up and in the end I conceded that maybe they did know better than I did. That doesn't help to take away the guilt though.

    You have cared for your husband at home far longer than I did to as he wasn't that bad before the amputation, so you have nothing to feel guilty about. You are still caring for him albeit in a different way. Being involved in his nursing home was the way I coped with the emptiness although having my lovely golden retriever helped of course.

    Some people say it's like a slow bereavement but I have to say that the final, real bereavement holds far more emptiness. Do make the most of your visits and try not to fous on your husband never coming home. I was desperate to bring my husband home but, as someone said to me, he may very likely no longer recognise this house as his home so maybe, just maybe, it wouldn't have been a good thing to have done anyway.

    Do keep coming back here as the support is wonderful. Very best wishes. x

    p.s. Welcome to TP!
  6. Jinx

    Jinx Registered User

    Mar 13, 2014
    Welcome to TP Sarav, my husband hasn't reached that stage yet although I think it is a decision that will have to be made one day. Take note of what other's have said and know that you did everything you could until your husband's health deteriorated to a point where you could no longer cope alone and now you are still supporting and loving him whilst other's take on the full burden of his increasing needs. I hope you have friends who can help you but you'll also find lots of support here. Big hug.

    Sent from my iPad using Talking Point
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    Sarav, don't feel upset. You are doing the very best thing to keep him safe and well looked after. There is no guilt in that!
  8. truth24

    truth24 Registered User

    Oct 13, 2013
    North Somerset
    Welcome Sarav. My OH went into his home a year ago and was very unhappy at first so I was as you are, terrIbly upset after each visit. Now he is contented and happy and most visits are a pleasure so the guilt has lessened but I shall never lose the feeling that it should be me caring for him. Best wishes.
  9. mcmidlothian

    mcmidlothian Registered User

    Feb 11, 2015
    feeling of guilt

    Hi Sarav
    I am going through the same thing right now and the overwhelming feeling of guilt is dreadful. Your heart tells you one thing but your head tells you, you are not wonderwoman, you are human and there is only so much we can do. There come a time when professionals have to take over, for their safety and your sanity.
    If you continued to try to do it on your own, you would probable go into depression, and what good would you be to him then. You are still seeing him now and in time you will feel less stressed about it, which will make your visits more pleasant.
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    Hi Sarav. Feeling guilty is a normal reaction to what you are going through. But it is a false guilt. It's because we tend to, in our minds, (and maybe hearts?) lump "caring" in together with "loving" as if the two were inseparable - if we are not doing one, then maybe we aren't doing the other either, whispers that little guilt monster. *slaps guilt monster with the Talking Point community Guilt Monster stick!*

    In fact nothing could be further from the truth. We all have had to get to the point where we realised that we couldn't give our loved ones the care they needed and deserved on our own anymore - the best possible care. There comes a point when it's a job for more than one person. It needs a round the clock team. So, at that point, ensuring that they get that level of care - the best possible level of care, rather than just exhausted us, struggling to do it all - is taking care of them.

    I, like others, had been so determined to keep my husband at home. But I simply couldn't. It was getting dangerous for both of us, between the level of care he was coming to need, and his increasing aggression. Still though, when he finally went to a nursing home, I felt like I'd let him down, like I should be able to cope, maybe I just hadn't tried hard enough - etc. etc. Now though - when I can see the level of care he needs (because of course dementia doesn't stand still) - and when I can see the level of care he gets, and the equipment the nursing home have on hand, and the ease with which they can arrange changes, like getting him on to pureed diet, getting dietary supplements, getting him an air mattress, a high dependency chair - all those things that I know would have been such a battle for me to manage at home. Do I still feel guilty? Not a bit. Sad, yes. But not guilty. Rather, thankful that he can have such a high level of care.

    So you (and the rest of you!:D ) hold up your head and steel your resolve - because you are doing it for love, even if it's not what either of you want. xx

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