Dear Marylil52. How difficult and painful for you. This is what i dread happening to us. At the moment I am trying to arrange a weeks respite and that makes me feel bad. I have been told that whilst us carers are feeling so miserable the chances are that our loved one will settle and actually like the life in care home. I will be thinking of you today and send you a big hug and hope that things go better than you could hope for. Lots of love and let us know how you are getting on.xxx
I can't bear to put my husband in a home
- Thread starter Marylil52
- Start date
I've just left my darling D. The care home people were incredibly nice. We're treating it as respite but I think he's there for the long haul. We had a wonderful peaceful waking up in sunlight. Yesterday he looked coldly at me and said "go away" very calmly and hatefully. This morning we cuddled and slept and cuddled, then I helped him dress and we had breakfast. And then I told him (again) that I was taking him for respite so that I could have a rest. His old and much loved friend drove us there, where we left him In a really nice room, with kind, kind carers. I may go in tomorrow, more likely Sunday.
I've come home to peace, quiet and the cats and really, more than anything else, want to die.
I expect things will get better.
You have all been wonderful. Thank you so very much.
I've come home to peace, quiet and the cats and really, more than anything else, want to die.
I expect things will get better.
You have all been wonderful. Thank you so very much.
Im glad it went well for him Marylil - even if it didnt go so well for you. Well done for holding it together while you were there. Its going to take time for both of you to adjust. You will still be caring for him, there will still be a lot for you to do, it will just be a different way of caring - and you will be able to sleep at night!
Can you do something nice for yourself that would have previously been difficult? A long soak in the bath, watching a DVD that you would like to watch or a walk in the country?
Be gentle with yourself.
Can you do something nice for yourself that would have previously been difficult? A long soak in the bath, watching a DVD that you would like to watch or a walk in the country?
Be gentle with yourself.
Thank you so much canary. I'm watching the Olympics. Wonderful 10,000 metres by a tiny Kenyan woman and now Jessica Ennis Hill. They are so brave and full of heart.
I rang the CH just now. They put me on to D. He sounded very slow and tired but was himself and said he was fine. I told him he is in my heart and he told me he loves me. Feel a bit better. Your words about my still being able to care for him are really comforting. And true. I must just keep the courage up, as D is doing and as so many here on TP are doing, inspiringly, every day.
Thank you again.
Oh Sweetie, I can't remember ever reading about a carer, who went with their loved one to a care home, with a skip in their step, singing "oh what a beautiful morning".
We all feel/felt rotten, guilty and inadequate. But we know in our hearts that there is no shame in saying "I Can't Cope".And the next person who apologises for "whingeing" on here, is going to find themselves sitting on the naughty step.
You have nothing to apologise for, when all you are doing is relating the hell you're going through. You are still D's wife, whether you are next to him in the marital bed, or 20 miles away. You are still caring for him, and about him, and he is your number one priority. The only thing that has changed is instead of wearing yourself down, to an exhausted wreck, you'll now have the opportunity to have an uninterrupted sleep at night, and recharge your batteries.
In my case, it took weeks for me to get used to the luxury of a Private Wee, as I even had to take John to the toilet with me, as I couldn't leave him alone for a second. I hope you sleep well. xxx
I went to the CH this evening and found D in OK shape, very quiet, confused, but clear about who I was. They had not shaved him (though I had stressed he likes to be clean shaven) or dressed him in his shirt - just a t shirt and jersey. He looked awful. I gave him a quick shave (even though it was evening) and showered him and got him into pyjamas and sat with him until he went to sleep. I asked the carers to make sure he was shaved tomorrow, and given one of his shirts to wear. They were sitting chatting outside his room, one if them cuddling a very old lady, stroking her head. They were very gentle and very nice.
These are minor things, aren't they? But they showed the difference between me looking after him at home (and being constantly exhausted) and a CH, which is less concerned with incidentals, maybe.
The one thing that did worry me - and I didn't mention to the carers - was that I found a small chunk of foecal matter on the floor of his bathroom - which was otherwise impeccably clean. Should I say something?
D is so diminished in the CH. I'm sure he is looked after, and the fact that there have been no incidents of anger or aggression is reassuring. But I'm missing him desperately. He's supposed to be in for two or three weeks respite (and knows I need a rest), but the general view is that if this works and he settles, he should stay there. But I'm back to my original message. I can't bear it. I can't bear not to have him here, to care for him and love him. But I'm exhausted, and he has been aggressive. I know that TP friends will advise that I leave him there. But this is really agonizing. Am I living in cloud cuckoo land, wanting to bring my darling home? If only he could be quiet, we could manage. Might the progression of his DLB make him calmer? If so I could organise care at home.
I'm so sorry to go on and on.
Someone in another thread has written movingly about despair. He's right. This is utter loneliness, complete sorrow.
These are minor things, aren't they? But they showed the difference between me looking after him at home (and being constantly exhausted) and a CH, which is less concerned with incidentals, maybe.
The one thing that did worry me - and I didn't mention to the carers - was that I found a small chunk of foecal matter on the floor of his bathroom - which was otherwise impeccably clean. Should I say something?
D is so diminished in the CH. I'm sure he is looked after, and the fact that there have been no incidents of anger or aggression is reassuring. But I'm missing him desperately. He's supposed to be in for two or three weeks respite (and knows I need a rest), but the general view is that if this works and he settles, he should stay there. But I'm back to my original message. I can't bear it. I can't bear not to have him here, to care for him and love him. But I'm exhausted, and he has been aggressive. I know that TP friends will advise that I leave him there. But this is really agonizing. Am I living in cloud cuckoo land, wanting to bring my darling home? If only he could be quiet, we could manage. Might the progression of his DLB make him calmer? If so I could organise care at home.
I'm so sorry to go on and on.
Someone in another thread has written movingly about despair. He's right. This is utter loneliness, complete sorrow.
Morning Marylil.
You're doing so well.
I think that if ANYTHING worries you about D's care/environment, no matter how insignificant it might seem, it would make you feel better to mention it. The care staff are used to this, don't worry, and it shows how much you ARE still caring.
Do try to have some "me time" too - that's what the purpose of this break originally was! xxx
You're doing so well.
I think that if ANYTHING worries you about D's care/environment, no matter how insignificant it might seem, it would make you feel better to mention it. The care staff are used to this, don't worry, and it shows how much you ARE still caring.
Do try to have some "me time" too - that's what the purpose of this break originally was! xxx
Hello Marylil, l didn't visit my husband for 2 weeks, the Manager at tha CH advised me not too, as he needed time to settle, l did phone everyday, l was so exhausted l think that two weeks without caring 24/7 3 months with hardly any sleep.
It may sound strange, but l felt absolutely wonderful!! We are all different, if you feel you can cope with looking after your husband, there is no rule that you have to keep your husband in the CH. It will be your decision, just see how you feel in a couple of weeks, you are over the first hurdle, l took my husband to the CH it was a very difficult thing to do, bless you.
It may sound strange, but l felt absolutely wonderful!! We are all different, if you feel you can cope with looking after your husband, there is no rule that you have to keep your husband in the CH. It will be your decision, just see how you feel in a couple of weeks, you are over the first hurdle, l took my husband to the CH it was a very difficult thing to do, bless you.
How well I understand your dilemma, Marylil.
It all got too much for me too, and when my husband (his dementia, it wasn't HIM) frightened me with his capacity for violence, I knew I had to find somewhere for him to get some respite...
But that wasn't something that could be arranged there and then...it took two failed attempts to get him accepted before a place became available at a small care home, and weeks later that's where he went, just so that we could both get some rest. By then I was, and remain exhausted.
With hindsight, I wish I'd accepted earlier that we both needed this solution, so that perhaps I would be less exhausted now. I visit him and do his laundry, organise a rota of visitors, and am struggling to sort out the financial muddle he wouldn't let me deal with. But I'm very very tired, and afraid my own health will fail. But at least, if that happens, I know he's somewhere safe where they can look after him.
What if your health fails?
It all got too much for me too, and when my husband (his dementia, it wasn't HIM) frightened me with his capacity for violence, I knew I had to find somewhere for him to get some respite...
But that wasn't something that could be arranged there and then...it took two failed attempts to get him accepted before a place became available at a small care home, and weeks later that's where he went, just so that we could both get some rest. By then I was, and remain exhausted.
With hindsight, I wish I'd accepted earlier that we both needed this solution, so that perhaps I would be less exhausted now. I visit him and do his laundry, organise a rota of visitors, and am struggling to sort out the financial muddle he wouldn't let me deal with. But I'm very very tired, and afraid my own health will fail. But at least, if that happens, I know he's somewhere safe where they can look after him.
What if your health fails?
Have been catching up, and recognise exactly how despairing you feel Marylil. My husband is now in his seventh week of what started as respite, and I've only just started to get a whole nights sleep. But have no energy whatever.
If he had remained at home, and if I had collapsed, which I truly think could have happened, someone would have had to find him somewhere to move to in a hurry. The people at that place wouldn't have known anything about him, and I wouldn't have seen the place where we was. So for that reason, it makes sense for him to remain where he is, where they know both of us, and I've been able to help them understand him.
It's not perfect, and I hope to be able to take him out by myself a bit later on, but for now, I haven't the energy. So friends and family visit him there and also take him for little outings. And I spend as much time as possible with him.
If your husband comes hom after the respite, at least now there's a place where they know him, and know you..and hopefully they would have a room available later should one be needed.
It was never meant to be like this was it? And what I realise is that what we're going through is also happening to so many others.....such a cruel disease.....
If he had remained at home, and if I had collapsed, which I truly think could have happened, someone would have had to find him somewhere to move to in a hurry. The people at that place wouldn't have known anything about him, and I wouldn't have seen the place where we was. So for that reason, it makes sense for him to remain where he is, where they know both of us, and I've been able to help them understand him.
It's not perfect, and I hope to be able to take him out by myself a bit later on, but for now, I haven't the energy. So friends and family visit him there and also take him for little outings. And I spend as much time as possible with him.
If your husband comes hom after the respite, at least now there's a place where they know him, and know you..and hopefully they would have a room available later should one be needed.
It was never meant to be like this was it? And what I realise is that what we're going through is also happening to so many others.....such a cruel disease.....
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Dear Raggedy Ann and other TP friends
We really are all in this together, aren't we? Every single thing you say I recognise instantly. I hope you are holding on and getting the rest you need.
I'm spending most of my time also organising visitors - our friends have been wonderful - and now need to go back to the CCG to argue about funding. I'm dreading thus and so far gave been too tired to take up the cudgels, but it will need doing. There's a very nice woman whose terribly ill husband us in the CH room next t to my D. He is a major nuisance because he wanders about and the other day urinated on D's slippers - and carpet - while we were in the CH garden. This was territorial marking, not incontinence. He still keeps floating in. His wife has warned that he will be aggressive if I try to get him out and said to call a carer. But I feel that D is vulnerable. I've spoken to the CH about it and have asked them to take this very seriously. But what struck me us the condition of his wife, who is spending up to 8h a day there and is clearly on the edge. She can't stop talking and moving her hands. I feel desperately sorry for her and have advised where she could get help, Inc TP, which I've said might be a life saver for her. But she won't go online and disapproves of asking g for help. I don't know what else to do but am reminded of the need for all of us to look after ourselves...
Thank you for all your help. Very many good wishes.
I've had the same problem with my husband at the nursing home. He wanders into other rooms and gets onto their beds. Several times he got into a cot where there was a very frail immobile lady. I suggested he be moved away from her room, and so far it's worked and he hasn't done it since. There was no sexual motive and he didn't harm her, just wanted to get onto her bed. I am at the nursing home every afternoon, and without fail a resident will wander into Peter's room. His dressing gown, slippers, glasses and remote control have all gone missing, but been found. There is one resident who likes to help herself from his sweets. I'm afraid this is what happens in dementia care.
I've put a box of Quality Street in Rob's room, and invited carers and anyone who pops in to help themselves. Rob always like to Play host, and is pleased, plus I hope he'll get company when he might otherwise be on his own.... So far, no one has abused his hospitality.
I doubt it is territorial marking! I expect that he was wandering about, needed to go to the loo, didnt know where the toilet was and so just went where he was.
Theres a gent in mums CH who does the same and the carers try and keep an eye out for him.
My husband has unwanted visitors in his room, l am always finding ladies in his bed, ( not with my husband) most of the residents rooms are locked, if they lock my husbands door he gets cross and tries to brake the door down. Its a nightmare at times, can't leave anything much in his room as things disappear. I have a key so when l visit l can lock his door, as l am forever stopping residents going in his room. Most care homes have the same problem with rooms that are left open.
Yes, people wandering in and out of rooms, things going walkabout, people undressing (and worse) in public - theres never a dull moment in a dementia home!
Im afraid that it is all part of the rich tapestry of life and eventually it all seems quite normal. Make sure that everything is named. Eventually most things turn up, but make sure that there is nothing valuable or irreplaceable there. Take scans of photos and send the scans there in case the photos get damaged.
Try not to get too upset by the behaviour. I have found that as I have got to know the residents and their families I have become much more tolerant of their foibles.
Im afraid that it is all part of the rich tapestry of life and eventually it all seems quite normal. Make sure that everything is named. Eventually most things turn up, but make sure that there is nothing valuable or irreplaceable there. Take scans of photos and send the scans there in case the photos get damaged.
Try not to get too upset by the behaviour. I have found that as I have got to know the residents and their families I have become much more tolerant of their foibles.
