Is he starting to go down?

[SandyRose]

Not sure if this is really worth asking but, my husband has now been in a care home for 19 months, he improved, settled almost at once and really does not appear to have deteriated and, in as much as you can get used to things, I am used to the 'new' person to a large extent. No longer the person he was, but 'new'. I know he walked continuously round the care home all day long, thinks he is at his old place of work from 30 odd years ago, no idea where he is.

So what has changed? I'm not sure. Every time in the last 2/3 weeks he is sleeping. Thought it was because he is having bad nights, but the last carer I spoke to today says not, he just sleeps a lot now and this is normal. All the residents do seem to be always asleep, but he wasn't one of them. I this the next stage down or nothing much? I have got used to nothing much changing, at least as far as I am aware.

Not sure what I am asking for here. Had him home yesterday, he never really engaged in any way and was falling asleep all the time. Really felt/feel - where has my husband gone! The man I have known for 50 years and even now is only 69. He left the house without a backward glance. I know people say that he is still there somewhere and sometimes I can believe it but - often, I don't. He has gone, the man I have known most of my life is no longer there.

 

[AJAY59]

I know how your feeling my wife of 36 years disappeared over 2 years ago - she is 67 now and had early onset Alzheimers -bad genes - I have looked after her during the pandemic at home sometimes she is with me or knows me and other times not Sleeping is part of it -She sleeps more and more -not eating or drinking much now She tells me its awful sometimes - when lucid - I hate seeing her suffer -and I have told her get out when you get the chance -don't look back She collapsed the other day following the Pfziser Booster Jab -big coincidence - currently in hospital but she is medically optimised they tell me to day (just want her bed) -*** - she can't stand up on her feet without support - Looks like its rehab placement or a Nursing Home as I can't manage her if she is bed bound - Her time is coming and it will be a blessing as this is not life just a living hell for her Our Care systems in this country are rubbish -

 

[Sigricb]

I know how your feeling my wife of 36 years disappeared over 2 years ago - she is 67 now and had early onset Alzheimers -bad genes - I have looked after her during the pandemic at home sometimes she is with me or knows me and other times not Sleeping is part of it -She sleeps more and more -not eating or drinking much now She tells me its awful sometimes - when lucid - I hate seeing her suffer -and I have told her get out when you get the chance -don't look back She collapsed the other day following the Pfziser Booster Jab -big coincidence - currently in hospital but she is medically optimised they tell me to day (just want her bed) -*** - she can't stand up on her feet without support - Looks like its rehab placement or a Nursing Home as I can't manage her if she is bed bound - Her time is coming and it will be a blessing as this is not life just a living hell for her Our Care systems in this country are rubbish -

Medically optimised we were told that about mum a few weeks ago after she had a TIA and ended up in hospital for over two weeks. What an awful expression like they are some sort of machine! I'm sure its so health can tick a box on a computer to say this is now a social problem. I'm so sick if hearing that well its Dementia its social care and you have to pay. Mum came home carers in 4x a day obsolutely useless we had to stay with her most if the time one week after discharge she was on the floor again. Now in residential care at a mere £850 per week! Such a cruel disease everyone says yes we understand they don't its just left to partners and families to cope as best they can.

 

[SandyRose]

Care Home rang this evening. He is having medication for UTI tomorrow. I know how these things can affect a person but he's been agitated and verbally abusive to the staff and even kicked another resident. I also asked if they think the dementia is progressing. They do.

I think things have been so relatively stable so long I somewhat forget that it is a progressive disease, he will get worse, much worse. For some reason this upsets me a little as the man I knew draws ever further away from me, his family and any grip on reality.

 

[SandyF]

Hi. I just want to say you are not alone. Just when you think it’s kind of okay, kind of manageable, emotionally, something changes and that aching feeling of loss comes to the fore. It’s grief. It’s awful at times. I’ve stopped trying to make it go away and opted instead for telling myself the truth. The truth for me is that watching my mum fade is unfathomably painful and is the hardest thing I’ve ever been through. There’s no glossing over it. I miss who she was. I love the bones of her and hold her as much as I can knowing she is the most precious thing still - and that the moments we have are running out. I was doing my own head in trying to rationalise it and find something positive to think, or just trying to make sense of what has happened to her. I’ve stopped going that and weirdly feel much better acknowledging the fact that this is a difficult, changeable, tragic and terribly sad state of affairs.

 

[SandyRose]

You have put that very well and it mirrors my feelings almost exactly. You just can't make sense of it. Rang him on his own mobile, which he leaves in his room, last night at 10pm which strangely is a time when he seems so normal and he did except for the first time he was not speaking into the phone, speaking 'at it' if that makes sense, could barely hear what he said, so, I think, is this another step down from what he understands, unable to know to hold the phone to his ear/mouth? From what I could hear though he sounded 'normal' and this comforted me somewhat.

 

[Grannie G]

this is a difficult, changeable, tragic and terribly sad state of affairs.

Yes, it is and is and the progression is a shock to all of us. It`s really difficult to accept but however vacant the person with dementia seems to be, no one knows what is going on inside.

All we can do is hold on to what we had. Years of loving can`t be wiped out when illness makes a person with dementia unresponsive.

It might be time to think of what we can offer them rather than what we can ask of them and give them our best in their final years while being thankful we are not the ones who are ill.

 

[canary]

for the first time he was not speaking into the phone, speaking 'at it' if that makes sense, could barely hear what he said, so, I think, is this another step down from what he understands, unable to know to hold the phone to his ear/mouth?

My mum did this. Soon after, she lost the concept that there was another person at the other end of the phone and that marked the end of telephone conversations.
So sad.

 

[SandyF]

You have put that very well and it mirrors my feelings almost exactly. You just can't make sense of it. Rang him on his own mobile, which he leaves in his room, last night at 10pm which strangely is a time when he seems so normal and he did except for the first time he was not speaking into the phone, speaking 'at it' if that makes sense, could barely hear what he said, so, I think, is this another step down from what he understands, unable to know to hold the phone to his ear/mouth? From what I could hear though he sounded 'normal' and this comforted me somewhat.

That’s lovely. The good little things that happen are great aren’t they - and they feel like big things. Thinking of you and your dad and sending hope.

 

[Prajna]

My husband, aged 88, has Alzheimer’s and I’ve been his sole carer for the last 2 years. It is increasingly demanding and I have now developed a serious heart condition I am 81 - is it time to put him in a care home?

 

[Bunpoots]

I’m sorry to read you’re not well @Prajna

I found looking after my dad with dementia very stressful and, at times, physically demanding and I’m fit and relatively young. I’d certainly have been looking for a carehome sooner rather than later if I hadn’t been well. You need to think of yourself too.

 

[Shedrech]

oh my days @Prajna
for both your sakes start making arrangements for your husband to move into residential care ... he needs a team of carers to take on the hands-on care, and you need to be able to look after yourself so you can be with him as his wife when you visit

 

[k.woodley]

Sadly this is dementia in progress. You may see an occasional glimpse of that man you loved but these glimpses will get fewer and fewer. Dementia is a CRUEL CREUL disease - it strips away the sufferers humanity - the closer you are/were to that person the more you see it. Keep in your mind THIS IS NOT YOUR FAULT, IT IS THE DISEASE OF DEMENTIA. The personality changes and his reaction to you can be anything from completely nothing to the most horrible verbal and/or physical abuse. THIS IS NOT YOUR FAULT, IT IS THE DISEASE OF DEMENTIA.
Talk to other carers - this will give you understanding of the process you are seeing. Love and hugs Kath

 

[martinsta]

My wife was diagnosed with Vascular dementia earlier this year, although showing symptoms for two years previously she refused to see a doctor. The diagnosis was a relief to me as it explained so much but did not tell me how to cope with the change in personality of the person I cherished she was 66 years old
Although she is still in the early/mid stage of the disease it was hard to cope with the change and I was frustrated and puzzled when the doctors appeared to be more concerned with my health than hers. However as things have progressed I have realised that the best help for people with dementia comes from those closest to them, and to start with we know nothing. Very much like a new born baby doesn't have instructions printed on its bum ) so as new parents we get advice and as carers the same goes. I am finding that I am empowered by knowledge not from doctors but from this forum, the society and recently the Admiral nurses.
The life my wife lives is lived in the world as she understands it and I think for the most part she is content and we should be glad this is the case, we can best help by being strong and informed Although I am not a religious person I was reminded recently of something I was told was the soldiers prayer which I think is very appropriate.......

grant me the strength to accept the things I cannot change,​

the courage to change the things I can,​

and the wisdom to know the difference.​

Merry Christmas all

 

[Floridagal]

My mum did this. Soon after, she lost the concept that there was another person at the other end of the phone and that marked the end of telephone conversations.
So sad.

 

[jennifer1967]

My wife was diagnosed with Vascular dementia earlier this year, although showing symptoms for two years previously she refused to see a doctor. The diagnosis was a relief to me as it explained so much but did not tell me how to cope with the change in personality of the person I cherished she was 66 years old
Although she is still in the early/mid stage of the disease it was hard to cope with the change and I was frustrated and puzzled when the doctors appeared to be more concerned with my health than hers. However as things have progressed I have realised that the best help for people with dementia comes from those closest to them, and to start with we know nothing. Very much like a new born baby doesn't have instructions printed on its bum ) so as new parents we get advice and as carers the same goes. I am finding that I am empowered by knowledge not from doctors but from this forum, the society and recently the Admiral nurses.
The life my wife lives is lived in the world as she understands it and I think for the most part she is content and we should be glad this is the case, we can best help by being strong and informed Although I am not a religious person I was reminded recently of something I was told was the soldiers prayer which I think is very appropriate.......

grant me the strength to accept the things I cannot change,​

the courage to change the things I can,​

and the wisdom to know the difference.​

Merry Christmas all

its the prayer of serenity. i have it framed on my wall.

 

[canary]

its the prayer of serenity. i have it framed on my wall.

Ive got it on a fridge magnet.
Some days it helps, but some days not so much

 

[Jude48]

I know how your feeling my wife of 36 years disappeared over 2 years ago - she is 67 now and had early onset Alzheimers -bad genes - I have looked after her during the pandemic at home sometimes she is with me or knows me and other times not Sleeping is part of it -She sleeps more and more -not eating or drinking much now She tells me its awful sometimes - when lucid - I hate seeing her suffer -and I have told her get out when you get the chance -don't look back She collapsed the other day following the Pfziser Booster Jab -big coincidence - currently in hospital but she is medically optimised they tell me to day (just want her bed) -*** - she can't stand up on her feet without support - Looks like its rehab placement or a Nursing Home as I can't manage her if she is bed bound - Her time is coming and it will be a blessing as this is not life just a living hell for her Our Care systems in this country are rubbish -

How I agree with you. Different counties and local authorities have very different levels of help and complex red tape to negotiate even getting diagnosis is a nightmare

 

[Hickory dickory dock]

My mum did this. Soon after, she lost the concept that there was another person at the other end of the phone and that marked the end of telephone conversations.
So sad.

We cancelled my mother’s phone in her room in the care home when she started phoning us in the night- no concept of time- and goodness knew who else she might have been disturbing. Now she enjoys video calls with the help of carers in the home, likes to see our faces and chat. Too many others eg on zoom is now getting to be a problem as the faces as smaller& she’s not readily recognising them and starts to lose interest: so now I think as she is getting worse with her dementia she’s better with fewer familiar face at any one time.She got distressed with Xmas cards, unable to remember who’s who. Got a little suspicious & paranoid too)So I think next year, if she makes it, we’ll just have immediate family cards only.

 

[Windy28]

My husband, aged 88, has Alzheimer’s and I’ve been his sole carer for the last 2 years. It is increasingly demanding and I have now developed a serious heart condition I am 81 - is it time to put him in a care home?

I think you need to look after yourself now and consider all the options open to you. Please ask questions on this site and friends will reply. Keep safe.