If you partner has dementia - how many of us want to walk away?

[Rosie4u]

Unfortunately my husband has never had any hobbies - he was a workaholic. I'm an avid reader and have tried, all our married life, to get him interested in books to no avail. He won't even read the newspaper any more or watch tv or listen to the radio.

His concentration is zero so I genuinely don't get a minute to myself from lunchtime onwards. It's like having a small, demanding child but harder because I can't just pop him in a pushchair and go for a walk (he's very bad on his legs and takes an age to walk from the kitchen to the sitting room).

I know I sound negative and that is unfair because we still laugh together about things he can remember from the past bit it's so hard when, as yesterday, he asks me who I am and where I live! He was only diagnosed in September....I didn't expect it to get so bad, so quickly. I guess we're still coming to terms with it and this forum is a massive help.

Oh I think I wrote this !!!! MY OH gets difficult if i am reading / ipad/ anything that distracts me from him. I've also had lots of hobbies but he hasnt - we used to play golf together - he cant and i cant get out for long enough. Again walking is now becoming difficult and i feel I am ageing by the day - I'm 10 yrs younger than him.
Great to be able to speak on this forum
Rosie

 

[carolynp]

Y

Oh I think I wrote this !!!! MY OH gets difficult if i am reading / ipad/ anything that distracts me from him. I've also had lots of hobbies but he hasnt - we used to play golf together - he cant and i cant get out for long enough. Again walking is now becoming difficult and i feel I am ageing by the day - I'm 10 yrs younger than him.
Great to be able to speak on this forum
Rosie

Oh yes Rosie I feel exactly the same as you, I am ten years younger but I am ageing by the day: my OH with FTD was also a workaholic, seven days a week in recent years. So I made my own life, got on, made the best of it - and now he’s almost permanently at a loose end and wanting entertainment. If I were to take him by car on daily outings, he would be so happy. Like Mr Magoo in the cartoons (if anyone but me remembers!), he just potters along, oblivious of all the handling he needs. And despite his words of kindness, he is oblivious, too, of my life as a separate person, and my needs.

 

[Mudgee Joy]

Even though my H is a very good fellow - the 24/7 nature of the task can reduce me to dispair occasionally !
I have a lady carer / cleaner who comes in once a week - but I know my OH is not keen on her (I love the house help) - but next Wednesday we are trying out a fellow who will come obstensibly to help tidy the shed !! I hope it works - he is then going to work towards becoming a friend - taking him for a drive, mucking about in the garden or going for a milkshake -!! it is worth trying different things as time passes.
I do like the idea of taking up playing a musical instrument myself -

 

[marionq]

I tend not to follow the longer threads as I just dont have the time to read them. However this thread has opened up so many aspects of our situation that I have kept reading and being shocked, surprised, amazed, impressed. If the decision makers would pay attention to what is being said on TP they might choose more wisely when making policy.

Best wishes to all of you. You are magnificent.

 

[Lawson58]

I tend not to follow the longer threads as I just dont have the time to read them. However this thread has opened up so many aspects of our situation that I have kept reading and being shocked, surprised, amazed, impressed. If the decision makers would pay attention to what is being said on TP they might choose more wisely when making policy.

Best wishes to all of you. You are magnificent.

COULD WE SIGN ALL OF THE POLITICIANS UP AS TP MEMBERS BUT MAKE IT COMPULSORY READING?

 

[maryjoan]

COULD WE SIGN ALL OF THE POLITICIANS UP AS TP MEMBERS BUT MAKE IT COMPULSORY READING?

About 25 years ago, I was involved in a group of parents whose disabled children had no respite facilities whatsoever in our area.

We were utterly despairing.

We decided to make a video film of what it was like with a disabled child in the family. This was traumatic to make, but we did it.

We took it along to the local County Hall to meet with the BIG BODS at Social Services, and when I gave the Chairman the film, he said he did not have time to watch it !!

However, he took it home.

The following day I had a phone call saying there was a press embargo on what he was telling me, until he formally announced it.

Turns out that his daughter MADE him find time to watch the film at home, and we got the funding.

Our campaign had taken FIVE YEARS and the facility still exists.

My point being that you have to force these people to see what life is like in the bizarre, upsetting, frustrating, peculiar world we and our loved ones now live in. Unfortunately, too much money is involved and it cannot happen.

 

[karaokePete]

Unfortunately my husband has never had any hobbies - he was a workaholic. I'm an avid reader and have tried, all our married life, to get him interested in books to no avail. He won't even read the newspaper any more or watch tv or listen to the radio.

His concentration is zero so I genuinely don't get a minute to myself from lunchtime onwards. It's like having a small, demanding child but harder because I can't just pop him in a pushchair and go for a walk (he's very bad on his legs and takes an age to walk from the kitchen to the sitting room).

I know I sound negative and that is unfair because we still laugh together about things he can remember from the past bit it's so hard when, as yesterday, he asks me who I am and where I live! He was only diagnosed in September....I didn't expect it to get so bad, so quickly. I guess we're still coming to terms with it and this forum is a massive help.

How often has your OH asked you who you are? This happened to me a couple of times a few months ago and I was shocked that my wife had deteriorated so quickly. It was pointed out to me that decline is rarely a smooth drop and getting one bad experience doesn't mean that they are advancing through the stages. This has turned out to be true in my case and I hope it's the same for you.

 

[karaokePete]

Y


Oh yes Rosie I feel exactly the same as you, I am ten years younger but I am ageing by the day: my OH with FTD was also a workaholic, seven days a week in recent years. So I made my own life, got on, made the best of it - and now he’s almost permanently at a loose end and wanting entertainment. If I were to take him by car on daily outings, he would be so happy. Like Mr Magoo in the cartoons (if anyone but me remembers!), he just potters along, oblivious of all the handling he needs. And despite his words of kindness, he is oblivious, too, of my life as a separate person, and my needs.

I'm sure it won't help but I just wanted to say how much I empathise with you there. There are many hardships in the life of a carer but that is the only one that gets to me. The only solace I take from it is that every time I recover from the hurt to my feelings I get to feel the depth of my love for my wife and know that the bond has survived another test. I feel that this is important as the strongest possible bonds will be required as our OH's decline so I'm glad that the love is there.

 

[karaokePete]

Even though my H is a very good fellow - the 24/7 nature of the task can reduce me to dispair occasionally !
I have a lady carer / cleaner who comes in once a week - but I know my OH is not keen on her (I love the house help) - but next Wednesday we are trying out a fellow who will come obstensibly to help tidy the shed !! I hope it works - he is then going to work towards becoming a friend - taking him for a drive, mucking about in the garden or going for a milkshake -!! it is worth trying different things as time passes.
I do like the idea of taking up playing a musical instrument myself -

Other than the word "fellow" I could have written that.
It helps to always remember we travel the same bumpy road and are there for each other.
Stay positive if you can.

 

[LadyA]

Even though my H is a very good fellow - the 24/7 nature of the task can reduce me to dispair occasionally !
I have a lady carer / cleaner who comes in once a week - but I know my OH is not keen on her (I love the house help) - but next Wednesday we are trying out a fellow who will come obstensibly to help tidy the shed !! I hope it works - he is then going to work towards becoming a friend - taking him for a drive, mucking about in the garden or going for a milkshake -!! it is worth trying different things as time passes.
I do like the idea of taking up playing a musical instrument myself -

I had a man come twice a week while I went to work those mornings, "to help with the heavier work in the garden". He and my husband would potter about in the garden together, then there'd be the ritual of making themselves tea and snacks, then a game of "chess" (though my husband couldn't really play anymore), then making lunch. Over the years, as my husband became less able, there was less gardening and more reading newspaper and magazine articles aloud to him, and watching DVD's together. It worked really well. It wouldn't have worked to have a woman in. William would never have accepted it.

 

[imsoblue]

Y


Oh yes Rosie I feel exactly the same as you, I am ten years younger but I am ageing by the day: my OH with FTD was also a workaholic, seven days a week in recent years. So I made my own life, got on, made the best of it - and now he’s almost permanently at a loose end and wanting entertainment. If I were to take him by car on daily outings, he would be so happy. Like Mr Magoo in the cartoons (if anyone but me remembers!), he just potters along, oblivious of all the handling he needs. And despite his words of kindness, he is oblivious, too, of my life as a separate person, and my needs.

Rosie and Carolynp, I too am 10 years younger than OH. About a year and a half ago, I went with him to the doctor due to shuffling of feet and I noticed some stuttering. He'd been saying he had arthritis in his back. Doctor #1 was a general practitioner. He did an MRI, etc and sent us to a back surgeon. After more x-rays, the surgeon said it's something else and to see a neurologist. That's when the road to a form of Parkinson's and then dementia began. Well, I would tell the array of doctors we began seeing that Doctor #1 wouldn't recognize him today and it wasn't even a year. And then it was time for annual check-ups again with Doctor #1. I scheduled one for myself the day before he was to see OH so I could tell him of the diagnosis and let him know he's in a wheel-chair, slumped over, dazed in appearance sometimes. And then I laughed. I bet Doctor #1 didn't recognize ME!!! I feel I have aged a lifetime.
And carolyp be thankful for the words of kindness. I got so frustrated with the foul mouth of OH last night that I pointed out I have cooked your meal, served your meal, brought it to the table, asked what you wanted to drink and brought it to you and will clean up. (I work full time). He said, "no you don't do that." I just stared at him with the salad dressing bottle in my hand. I call it Dementia Denial. His daughter has it too. If They say it, it's true. If he says I don't do anything for him, then he is okay. He doesn't need anybody to take care of him. But I didn't lose it until he took his first bite and dropped the dressing on his leg. He was too proud to ask me for a napkin so he grabbed a newspaper close by, crumbled it up, and wiped his leg off with it!
Is all of this dementia?

 

[Grahamstown]

@imsoblue we are both in the same boat tonight and I feel so bad with a headache and strain after nearly an hour of whinging and complaining about going to the pub, so he is not nearly as incapacitated as your OH. I have to stop him which I am just about able to do at the moment. This is a man who thinks his memory is fine, that he isn’t ill and can’t understand why he needs the pills. Doesn’t it feel ‘good’ as in a relief to get it down here and try and get to 8oclock when he will start going to bed. Total denial is very common I think.

 

[Lawson58]

About 25 years ago, I was involved in a group of parents whose disabled children had no respite facilities whatsoever in our area.

We were utterly despairing.

We decided to make a video film of what it was like with a disabled child in the family. This was traumatic to make, but we did it.

We took it along to the local County Hall to meet with the BIG BODS at Social Services, and when I gave the Chairman the film, he said he did not have time to watch it !!

However, he took it home.

The following day I had a phone call saying there was a press embargo on what he was telling me, until he formally announced it.

Turns out that his daughter MADE him shiploads find time to watch the film at home, and we got the funding.

Our campaign had taken FIVE YEARS and the facility still exists.

My point being that you have to force these people to haveversee what life is like in the bizarre, upsetting, frustrating, peculiar world we and do our loved ones now live in. Unfortunately, too much money is involved and it cannot happen.

I get so angry when our politicians throw a few more truckloads of money down the bottomless pit of defence. Things like health, aging, disability, education all have budgets that MUST be adhered to but defence is always sold to the public that as well as protecting our nation, there are always wonderful opportunities for employment and investment which will benefit us all so they can happily ignore any rational notions such as budgets.

That exactly the same arguments could apply equally well to the more socially responsible areas seems to be totally beyond their comprehension and any sense of accountability.

May your funding continue!

 

[carolynp]

I'm sure it won't help but I just wanted to say how much I empathise with you there. There are many hardships in the life of a carer but that is the only one that gets to me. The only solace I take from it is that every time I recover from the hurt to my feelings I get to feel the depth of my love for my wife and know that the bond has survived another test. I feel that this is important as the strongest possible bonds will be required as our OH's decline so I'm glad that the love is there.

Hello dear @karaokePete and thank you so much. Of course your words help. They help a lot. And your sympathy. More later - I just wanted to reach out and to let you know my thoughts and my gratitude are with you. All the very best, Carolyn.

 

[carolynp]

I

I get so angry when our politicians throw a few more truckloads of money down the bottomless pit of defence. Things like health, aging, disability, education all have budgets that MUST be adhered to but defence is always sold to the public that as well as protecting our nation, there are always wonderful opportunities for employment and investment which will benefit us all so they can happily ignore any rational notions such as budgets.

That exactly the same arguments could apply equally well to the more socially responsible areas seems to be totally beyond their comprehension and any sense of accountability.

May your funding continue!

I agree absolutely and would only add that the very areas of need you mention are also - guess what?! - the fields where employees are paid the least.

 

[GinnyJan]

How often has your OH asked you who you are? This happened to me a couple of times a few months ago and I was shocked that my wife had deteriorated so quickly. It was pointed out to me that decline is rarely a smooth drop and getting one bad experience doesn't mean that they are advancing through the stages. This has turned out to be true in my case and I hope it's the same for you.

Most days he'll either ask me if I've ever been married and if I've got any children. I always answer by saying "I've only been married the once - to you and we've got three children and four grandchildren". Sometimes he thinks I'm joking and sometimes he'll stop dead and then say "oh yes, of course, I forgot". Either way he often follows up an hour or so later by asking me if I want taking home yet??

It hurt at first, but I've got used to it now and I definitely agree that it brings out the depth of my love for him as well as my fear for the future.

 

[Mudgee Joy]

I had a man come twice a week while I went to work those mornings, "to help with the heavier work in the garden". He and my husband would potter about in the garden together, then there'd be the ritual of making themselves tea and snacks, then a game of "chess" (though my husband couldn't really play anymore), then making lunch. Over the years, as my husband became less able, there was less gardening and more reading newspaper and magazine articles aloud to him, and watching DVD's together. It worked really well. It wouldn't have worked to have a woman in. William would never have accepted it.

Many thanks LadyA for that . It’s a long road and I really hope this man-friend works out for my husband !
Thanks mud/ Joy

 

[karaokePete]

Most days he'll either ask me if I've ever been married and if I've got any children. I always answer by saying "I've only been married the once - to you and we've got three children and four grandchildren". Sometimes he thinks I'm joking and sometimes he'll stop dead and then say "oh yes, of course, I forgot". Either way he often follows up an hour or so later by asking me if I want taking home yet??

It hurt at first, but I've got used to it now and I definitely agree that it brings out the depth of my love for him as well as my fear for the future.

Oh that's isn't like my situation then so it must be tough.
I know what you mean about fear for the future as we all know that dementia is progressive. I deal with that by planning for the future(Wills, POA etc) but staying firmly rooted in the present. After all, we live in the present and we can't tell for definite what the future will bring so why ruin the present by being over occupied by worries about the future.
Good luck to both of you and your family.

 

[maryjoan]

Oh that's isn't like my situation then so it must be tough.
I know what you mean about fear for the future as we all know that dementia is progressive. I deal with that by planning for the future(Wills, POA etc) but staying firmly rooted in the present. After all, we live in the present and we can't tell for definite what the future will bring so why ruin the present by being over occupied by worries about the future.
Good luck to both of you and your family.

Last April, my OH family came down for a 'conference' and to sort out POA - seemed sensible at the time, and to my eyes a long way off being needed - here we are just one year later and having been needing it and using it for months - I would never have believed it!

 

[karaokePete]

Last April, my OH family came down for a 'conference' and to sort out POA - seemed sensible at the time, and to my eyes a long way off being needed - here we are just one year later and having been needing it and using it for months - I would never have believed it!

After her diagnosis I virtually swept my wife out the Clinic door and straight into the solicitors office. With dementia the progression is very much "How long is a piece of string?" so plan for the future, but don't fret is what I say.