Partner in denial

[Dutchman]

I guess it depends if Dutchman is in Holland or not, the rules may be different there, my wife refused an assessment but they did one anyway as I lead her to believe the assessment was for me, in fact it was for both of us.
K

Just for the record I’m in the uk but my father was Dutch.
I’ve had a tiring day. Started with my wife getting up too early for a short drive out and being generally annoying with constant repeat questions that got on my nerves, I flip and have a go, she throws the keys on the floor, I sulk all the way to end of our drive. I’m fed up with this and I admittedly feel I would be better off on my own but that’s only going to happen in a pretend universe. No one can sit in judgment on us unless they experience this day in and day out. We go to Waitrose and wander aimlessly along with her not deciding on anything. By the time we get home I’m tired of it all. She’s trying to write out some Christmas cards but it’s hopeless (I don’t tell her that) and I feel really sad for her as her writing and comprehension is shot and it must be so depressing for her knowing that those qualities are gone. So I’m floundering in a mixture of frustration and regret, sorrow and sadness.

 

[PalSal]

how does one deal with a partner with Alzheimer's who refuses to acknowledge that he has anything more serious than a 'bit forgetful'?

Everything I read seems to assume the sufferer acknowledges the disease and wants to help themselves and their carer. We visit the Dementia Nurse every six months, and it is a struggle to get him to even do that, but I can't imagine he will ever accept respite care or home carers or even being financially assessed .

Anyone got any ideas what I should do? Thank you for your help.

@Annakey TIME---eventually it will not matter if he denies it....it happens to most that they are just off in their own world of Alzheimers. Mine kept driving so I had to sell the cars, never wanted to talk about what was happening but was aware for many of the early years.
I do not know where you are reading the suffer acknowledges the disease and wants to help themselves, maybe some with very early diagnosis. But not the geneeral experience here on TP. But certainly 16 years ago when my hubby got Alz...he was hiding it and not acknowledging it in any way. He never really believed the diagnosis, even though both our daughters are doctors and were assuring him of the diagnosis, he never really wanted to accept it. He was 49

 

[Dutchman]

Just for the record I’m in the uk but my father was Dutch.
I’ve had a tiring day. Started with my wife getting up too early for a short drive out and being generally annoying with constant repeat questions that got on my nerves, I flip and have a go, she throws the keys on the floor, I sulk all the way to end of our drive. I’m fed up with this and I admittedly feel I would be better off on my own but that’s only going to happen in a pretend universe. No one can sit in judgment on us unless they experience this day in and day out. We go to Waitrose and wander aimlessly along with her not deciding on anything. By the time we get home I’m tired of it all. She’s trying to write out some Christmas cards but it’s hopeless (I don’t tell her that) and I feel really sad for her as her writing and comprehension is shot and it must be so depressing for her knowing that those qualities are gone. So I’m floundering in a mixture of frustration and regret, sorrow and sadness.

Finally got the Power of Attorney registered but the bank needs me to go in for an interview to get their approval. How do I leave the house to do this? Early hurdle in my adventure with dementia. Hundreds to go!

 

[Dutchman]

Finally got the Power of Attorney registered but the bank needs me to go in for an interview to get their approval. How do I leave the house to do this? Early hurdle in my adventure with dementia. Hundreds to go!

My wife is now unable to act as my Attorney so I’m drafting a new one. Anyone out there given thought to preferences to end of life care, what to write on the form? I’ve never given it much thought before and my wife can’t help so this forum is all I’ve got.

 

[Norfolk Cherry]

I kept my mum at home in her bubble of "memory not what it used to be" for about 9 years until she started getting acutely anxious, leaving the house and attempting to walk too far. I put her into a dementia unit t that point and it has been a nightmare for her. She describes the other residents ad "zombies", and says it's a prison. I'm feeling very guilty, but are there dementia homes where the residents are not so far down the road? I looked at 14 and they all seemed similar, some a lot worse. Overall though I agree, keeping the person content by avoiding confronting them is the best way to think about it for everyone's sake. In the end though, I lost the battle and gave up, hence the home.

 

[PalSal]

My wife is now unable to act as my Attorney so I’m drafting a new one. Anyone out there given thought to preferences to end of life care, what to write on the form? I’ve never given it much thought before and my wife can’t help so this forum is all I’ve got.

When I got my leukemia in 2015, I did mine, and our trusted dear friend and Alzheimers physician from the USA came walked my hubby thru his.
We used a standard Swiss form and then added specifics. We have given copies to our children, our doctors and my primary treatment hospital.
Also, a copy in the safety despoit box, just in case the kids cannot find theirs at the time.
It was important to my hubby that I was doing one, too. He went thru a time of being very paranoid. When we had tried to do one earlier he bulked, but when I got sick, he was somehow aware of me being sick. So, at last he was agreeable.

 

[Spamar]

When fil got ill with dementia we had an enormous problem with accessing his money to pay his bills. Hence we both did POA as soon as possible! And told everyone else to do them. That was 1986 or thereabouts.

 

[Dutchman]

My wife is now unable to act as my Attorney so I’m drafting a new one. Anyone out there given thought to preferences to end of life care, what to write on the form? I’ve never given it much thought before and my wife can’t help so this forum is all I’ve got.

Had quite a nice day today. Went to our local seaside (in Devon) and then had a coffee and cake. So far so good. Came home a decided to book a table for 18.00 for a fish and chip meal. I knew this would happen, OH wants to leave the house 14.30 and it’s 10 mins away. No matter how I try to reason the time she won’t have it, says I’m horrible and has now left the house off to somewhere and I’m now getting worried. Probably will have to cancel the meal as no point if we’re both up tight. She’s also going to bed much earlier now just as it gets dark and bothers me to also go but I stand my ground and manage to stay up till 20.00 and hopefully read for a little while. Today is the first day for a while that she’s been loudly aggressive, I thought that had stopped. Going out now to find her.

 

[Dutchman]

Had quite a nice day today. Went to our local seaside (in Devon) and then had a coffee and cake. So far so good. Came home a decided to book a table for 18.00 for a fish and chip meal. I knew this would happen, OH wants to leave the house 14.30 and it’s 10 mins away. No matter how I try to reason the time she won’t have it, says I’m horrible and has now left the house off to somewhere and I’m now getting worried. Probably will have to cancel the meal as no point if we’re both up tight. She’s also going to bed much earlier now just as it gets dark and bothers me to also go but I stand my ground and manage to stay up till 20.00 and hopefully read for a little while. Today is the first day for a while that she’s been loudly aggressive, I thought that had stopped. Going out now to find her.

Found her. Sitting in the pub at the table booked for 16.00 proudly waiting for me . Never going to book a table for a future time again. Any suggestions anyone. Perhaps spring it on her just before the right time

 

[canary]

Perhaps spring it on her just before the right time

Yup, thats the way to do it, otherwise they just obsess about the time and worry that they are going to be late.
Today OH got up early and got dressed ready for the remembrance service in the village. He then spent the next 4 hours obsessively reading the notice of the time it was starting. Drove me mad.

 

[Duggies-girl]

Found her. Sitting in the pub at the table booked for 16.00 proudly waiting for me . Never going to book a table for a future time again. Any suggestions anyone. Perhaps spring it on her just before the right time

Oh yes the surprise. Dad's GP and the hospital often ring me at the last minute if they need to fit dad in for a check up. I set my alarm on the phone and answer it and "How nice of them dad to just fit you in like that' 'can't possibly not turn up when they have been so kind as to fit you in'

It always works.

 

[mickeyplum]

I am sure the experts will say I did everything wrong but right from the start of my husband's memory problems I said I didn't want the word dementia mentioned to him. Our family argued that I should be up-front with him but to me, there seemed no point in telling him about a disease that is uncurable.
I explained my wishes to all the professionals we saw but quite naturally they were not about to start covering up. Thankfully they mentioned the diagnosis in a gentle casual way and he has asked not one single question concerning dementia since. That was 4years ago.
I too used to switch the telly over when helpless dementia sufferers were shown in later stages but don't bother now. If we meet anyone who says their relative has dementia, sometimes he will say as we walk away, 'What did she say was wrong with Bill?' I say something like, 'Oh I couldn't hear her properly,' or, 'She said Bill's not well but he's being taken good care of in a home.'
He often comments about his bad memory but tells the family, 'It's old age, that's all.' He's 90. I asked him if it worries him and he said no, it's to be expected at his age.
I find that if I make a point of mentioning my bad memory re something that I've forgotten to do, it reassures him in a way, and he'll say, ' Don't worry about it, it's no problem. I'm the same with my memory.'
If he had any other illness I wouldn't waste my time or upset him by talking about it and reminding him.
But as I said at the beginning... I'm probably doing it all wrong but it works for us and keeps him contented.

 

[Rosebush]

I am sure the experts will say I did everything wrong but right from the start of my husband's memory problems I said I didn't want the word dementia mentioned to him. Our family argued that I should be up-front with him but to me, there seemed no point in telling him about a disease that is uncurable.
I explained my wishes to all the professionals we saw but quite naturally they were not about to start covering up. Thankfully they mentioned the diagnosis in a gentle casual way and he has asked not one single question concerning dementia since. That was 4years ago.
I too used to switch the telly over when helpless dementia sufferers were shown in later stages but don't bother now. If we meet anyone who says their relative has dementia, sometimes he will say as we walk away, 'What did she say was wrong with Bill?' I say something like, 'Oh I couldn't hear her properly,' or, 'She said Bill's not well but he's being taken good care of in a home.'
He often comments about his bad memory but tells the family, 'It's old age, that's all.' He's 90. I asked him if it worries him and he said no, it's to be expected at his age.
I find that if I make a point of mentioning my bad memory re something that I've forgotten to do, it reassures him in a way, and he'll say, ' Don't worry about it, it's no problem. I'm the same with my memory.'
If he had any other illness I wouldn't waste my time or upset him by talking about it and reminding him.
But as I said at the beginning... I'm probably doing it all wrong but it works for us and keeps him contented.

I don't mention it either, what's the point he wouldn't t remember anyway. My husband is 71. Lx

 

[Amy in the US]

Mickeyplum, I also have never mentioned dementia or Alzheimer's or any sort of similar words or diagnosis, to my mother (now almost four years since she was diagnosed but was clearly affected by the dementia for years prior). Earlier on, it would have upset her and that was what we tried to avoid at all costs. I am not sure she would comprehend it now, but to be safe, I still don't mention it. She cared for her mother (with dementia) and if she understood she has it as well, she would be distraught. I have always asked all carers, doctors, nurses, staff, everyone, not to mention it to her or in front of her.

 

[canary]

Im sure that what you are doing is right @mickeyplum It is important to minimise distress and if something that cant be altered distresses her then why mention it? I did exactly the same with mum - I just used to refer to her "memory problem". The doctor at the memory clinic told us gently that it was Alzheimers, but it seemed to go right over her head and no-one ever mentioned it to her again.

 

[maryjoan]

My OH knows he has dementia - but they might as well have told him he has blue eyes - he has anasogosnia as well so it does not bother him in the least.
We all have to tread this path as best we can.

 

[mickeyplum]

Wow, how reassuring to read from some of you that I haven't made a mess by hiding my husband's dementia from him! He's never had the slightest interest in medical conditions or their names. Even before his memory problems he wouldn't have batted an eyelid if I'd suddenly announced I was going to have a vasectomy! I used to have a standing joke with him about that.

 

[Dutchman]

Found her. Sitting in the pub at the table booked for 16.00 proudly waiting for me . Never going to book a table for a future time again. Any suggestions anyone. Perhaps spring it on her just before the right time

I managed to go out for a walk, about an hour. When I got back my wife was worried I’d be meeting up with someone. Actually on my walk I got to thinking about her side of things and it hit me how cruel dementia is and how it destroys the one you used to know. My wife never asked for this and it must be a frightning place at times, confusing and frustrating. She tried to write a Christmas card today and couldn’t work out the letters and how to write the address. This is someone who did all the cards in an afternoon, arranged all of Christmas for our family, wiped the floor with me at Scrabble, was first at word games, very confident at making meals, etc.....all gone now. To watch her struggle over writing a word is painful and it chokes me up . I try to help but want her to be at least a little independent.

I think as carers we sometimes feel sorry for ourselves too much, and yes I know we should care for ourselves, but I can’t help thinking what a despairing place it must be in my wife’s mind. All I can do is to protect her and try to lessen the anxiety she feels. We learn as we go along.

 

[Dutchman]

I managed to go out for a walk, about an hour. When I got back my wife was worried I’d be meeting up with someone. Actually on my walk I got to thinking about her side of things and it hit me how cruel dementia is and how it destroys the one you used to know. My wife never asked for this and it must be a frightning place at times, confusing and frustrating. She tried to write a Christmas card today and couldn’t work out the letters and how to write the address. This is someone who did all the cards in an afternoon, arranged all of Christmas for our family, wiped the floor with me at Scrabble, was first at word games, very confident at making meals, etc.....all gone now. To watch her struggle over writing a word is painful and it chokes me up . I try to help but want her to be at least a little independent.

I think as carers we sometimes feel sorry for ourselves too much, and yes I know we should care for ourselves, but I can’t help thinking what a despairing place it must be in my wife’s mind. All I can do is to protect her and try to lessen the anxiety she feels. We learn as we go along.

I’ve been thinking about how I’ve come across in that last paragraph and I don’t want to lessen the heartache that people experience while they’re trying to manage the caring role. The feeling I had when I tried to be inside my wife’s mind was extremely strong and I felt , and at the same time, sorry for her and and myself.

 

[kindred]

I’ve been thinking about how I’ve come across in that last paragraph and I don’t want to lessen the heartache that people experience while they’re trying to manage the caring role. The feeling I had when I tried to be inside my wife’s mind was extremely strong and I felt , and at the same time, sorry for her and and myself.

I know, I so understand. Sometimes the relentlessness of it all kind of turns the loved one with dementia into the enemy and we can lose sight of the anxious, confused world they are in. I know. With love, Kindred.