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Discussion in 'I care for a person with dementia' started by Rageddy Anne, Apr 27, 2016.
Good to hear things are going well so far. Please take care of yourself.
All seemed calm this morning when our son dropped in at the Respite Care Home. I hope the day continues well.
There must be a balance between my husband having a few visitors and us not becoming a nuisance to the carers. I hope we're not overdoing it.
Ann, I can't tell you how thrilled I am that you are getting this break - so, so glad its going well x
As for visiting, I can't imagine that the home would mind how often someone visits or not - but if you are worried, just ask, you could say (or rather, one of his visitors could say for you) that you just want to be sure that the visits don't agitate your husband x
You will not be a nuisance to the carers Anne. From my experience, carers like family to visit regularly , sharing the caring.
However this is respite and you need a break. It`s best to manage a happy medium.
I haven't visited in case my presence upsets his fragile acceptance of his situation. He doesn't seem to remember anyone, not even me, but what if he suddenly does, and it triggers an urgent need to " go home"?
His pal is going tomorrow, and I think our daughter in law might go today, though she hasn't said so.
If it turns out that he seems more contented there, and I think they might have a room available, then he would probably benefit from staying permanently. There's some pressure from family to accept that...I think they're worried about me, and I have realised just how tired and poorly I've become.
For me it would open up the can of worms of the finances, which he abandoned ages ago when he was diagnosed, but only because he insisted he would do it later.i don't know anyone who might help me with that....so I'm looking around for my Guardian Angel.
It's unexplainable Anne but my husband also seemed more contented in residential care. He often told me he was lonely when he was at home with me, probably because he was housebound and didn't see anyone . In the home there were lots of comings and goings which he seemed to enjoy, especially as it didn't put any pressure on him.
Sorry I can't help you with the financial aspect. Social services did a financial assessment for us and it all turned out fine.
Perhaps both of our husbands were quite social in their ways. I'm sure mine misses the comings and goings of his career, and at home lately he's had no one much to talk to but me.
I miss him dreadfully, even though it's a relief to be free of the constant vigilance. Feels like a bereavement, perhaps because at home I'm missing the old jolly, fun Rob, but the shuffling grumpy old man was a stranger. Either way, the house feels so empty, food in the fridge seems pointless, and there's no pleasure in making " a nice cup of tea".
Oh I'm so pleased it's going well so far, do look after YOU though !!!
((Huggss)) xx K
He's been OK according to the people who've visited. Good crew of lovely carers.
I'll be visiting tomorrow for the first time, with a friend who can divert him if he unexpectedly knows who I am and connects me with Going Home. Scared, to be honest.
It's horribly quiet at home, and oh, how I miss him! But am still terribly tired and poorly, didn't know how worn out I was. Fingers crossed he thinks I'm just another friendly face.....seeing him in a place where he feels more comfortable than home here with me.
May I suggest you behave as a friend without a lot of fuss. Good luck xx xx
Wishing you well for tomorrow Anne , knowing how you are feeling.
Friend couldn't come at the last minute, so our younger son came instead. All went well.He greeted me amiably but without drama, volunteered a few appropriate remarks as we chatted, laughed at jokes, and was easily diverted by lunch, so barely noticed we were leaving.
Next day ex-DIL visited him (wish she was still with our older son, but that's another story, they're both happy enough). She said he'd been agitated and " on a mission" so she stayed and after a couple of hours he went quiet. He had no socks on and was unshaven.
Today I went back, and eX-DIL also dropped in briefly, but soon left us on our own. The carers said again he'd been "on a mission, looking for me and calling my name, urgently, the previous evening. But he was unflustered when I went in, and greeted me amiably, looking at me a little puzzled, but too polite, I think, to ask who I was. I read the headlines to him, and he made appropriate noises when I mentioned the current news stories. He had a bruise on his elbow, no towel to dry his hands with, and mismatching slippers. Weekend staff, some from an agency, were kind but busy, and I ended up helping a lady with a knickers problem, as no one came when she called urgently. Lunch looked very good, and I left him chatting to the lady I'd helped. He asked why I couldn't stay, when I said I had a doctor's appointment he asked why I couldn't change it, but accepted that I'd better go.
I might go back later with a towel, to see how things are around teatime, and how close the residents are to their bedtime.. That's his anxious time of day, so should be interesting. I know he was allowed to sit up with the staff when he was wakeful....
So, it has gone quite well I suppose, so far. He's had his usual anxieties around evening, but the Care staff seem to have managed well, so I'm getting the break I need.
Sorting out the finances if we think he should stay will be a nightmare, but at least the respite will give me some time to think straight.
You're going to have to learn how to fill the day up, Anne. Have a film or music playing in the background. Get into whatever hobby you have, assuming you do? Go out when you can. Even if it's just to the shops - go out.
If your hubby ends up living in the CH permanently, then get a financial assessment done if you think you need one. You know my story now, so you can make that decision, or if you think you can manage, then that's also your choice. I hope your visit goes well for you. I've only read up to this message, so far, Anne. Just wanted to tell you I'm watching over you. Please take care, Anne, and please don't over-worry. Worrying never did any good, xxxxxxxxxxxxxxxxxxx
Considering how other homes and centres have failed you Anne, this is a promising start, not perfect but what is.
Agree, 100% - I am so glad that (whilst not perfect) it is going well.
I've found that there are a few (OK, a LOT) of things that I have to get my head around, now Mil isn't coming back, Anne and if you decide that permenent care is how it has to be, I guess it will be hard for you too, hun. I am (just about) hiding my disapproval when we go to visit Mil and her hair looks as though it hasn't been brushed (let alone washed) for 3 or 4 days, and though it means biting my lip, I say nothing about the food stains down her top - or the fact that she been wearing it for at least 2 days. A few times she has had someone elses cardie on, which I also really don't like, but I say 'nowt'. I think that I have to accept that a home or even the assessment unit where she currently is, simply don't have the time to be as 'fussy' about things like that as I am. But they are kind to her, she eats well, she has company, she seems to enjoy the activities, and just the fact that there are enough people to distract and stop her fixating on and getting cross with one person (which is what happened when I had her solo for long hours) means that although there is agitation and upset on occasion, I don't think its anyway near as bad as it was at home (most of the time, at least) - and that has to be better for her, so the greasy hair and grubby clothes are by comparison, a small price to pay. (And I am so much better at preaching that, than I am at actually doing it, of course ). I still tend to panic when I get told that she is or has been agitated, and feel somehow responsible or as though I should do something - but even when she was home, I couldn't stop that or even ease her upset, most of the time, and I just have to keep reminding myself of that fact.
I miss her too - I feel at such a 'loose end' at times - but the Mil I really miss is the pre-dementia Mil. And it would be 'that Mil' that I would still be missing, even if she were at home with us, because 'that Mil' has been taken away by the dementia anyway
Its an odd and difficult adjustement to make, when you go from 'full on, hands on' dealing with everything from practical personal care to the delusions and the anxiety and paranoia, to someone else taking all that (and everything in between) on, in your stead. I think (hope) it gets easier, and I am just trying to focus on the benfits for Mil when I start to fret and feel guilty. So far, if I really stop and think, they are tipping the balance and helping me come to terms xxxxxx
That's it, Ann. It's Care, but not as WE know it! It's going to be upsetting, I hate to see him so diminished, but for the time being, he's probably better off without me running on empty.
I didn't go back last evening, fell asleep, and when I woke I thought I was too tired to drive safely, then slept through most of the football....
But I can't rest, really, as I must organise finances that have got in a terrible muddle through years of denial and defensiveness. " I can do it, don't you interfere, I'll see to it later".
Goodness me, I hadn't realised just how tired I was! I practically collapsed in a heap. After two weeks of not having to force myself to keep going, I'm still tired and falling asleep every time I sit down.... Some people say it takes a long time.
We are very lucky, I think, the carers are lovely at the Care Home, and Rob has settled as well as possible. But he is aware that he isn't at home, and that he isn't with me all the time. But, strangely, although he knows my name, and is affectionate when he sees me, I don't really think he knows just who I am to him. He is equally pleased to be helped by other people. He gets dejected at being surrounded by people who don't really communicate, so it's very important that he gets visitors. When I go, I read the paper, and discuss selected news items in the old accustomed way, and he chips in, not always making sense, but he feels included in a grown up conversation. He's not exactly thrilled at playing bingo, which he's never done in his busy life. And woe betide anyone who suggests he colours in! He knows he's still a grown up.
Most of the family are encouraging me to let him stay, as there is a place for him to become a resident, and I'm really awfully worn down. But we all know what a difficult decision that is, while there's still a glimpse of the old Rob.
Rob seems to be settling fairly well into this Care Home, the carers are very kind, and with plenty of visitors he seems less agitated than he was at home. I hadn't realised just how tired and poorly I'd become, still keep falling asleep, and with all sorts of aches and pains.
They say he could keep his nice room if he stays on permanently. It's very tempting to accept that the time has come for me to give up the struggle of keeping him at home...neither of us is likely to get much better....and I know the family worries.
Sending you a massive hug and lots of love. I know only too well the decision is extremely hard, but you do have to think about yourself as well as Rob. Take care, Diana xxxxxxx
Dhiren only went into respite care once Anne and when he came home I realised the time had come for permanent care.
When I went to pick him up from Respite he was sitting happily and comfortably in a chair by the fire. He wasn`t expecting me and I had time to observe him.
When he cane home, and he seemed really pleased to be home, the contentment was short lived. He soon became restless and agitated. I was calling paramedics out almost nightly to help pick him up when he fell out of bed. A few weeks of this and I knew the time had come.
It was the most difficult and upsetting decision I had ever made but turned out to be one of the best.