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

[canary]

Yes, Pete, the desire to "go home" is often a desire to find somewhere safe and escape the confusion of the dementia and the home they are seeking is often a childhood home..

In this case, though, I think it is more likely to be Capgras syndrome (where they think that the real place has been changed for a fake) or Reduplicative Paramnesia. Both of these things are caused by damage to the brain, including dementia.
This site gives a brilliant explanation of Reduplicative Paramnesia
http://sites.psu.edu/alexaugustpassion/2016/04/13/reduplicative-paramnesia/

 

[cumbria35]

I feel terrible too when I tell my daughter about these daily stupid things which are so difficult to live with. He is lovely sometimes so I try to cling onto those moments and keep calm but firm when I have to protect him. The list I created is proving invaluable because I ask him to read it when things get difficult and it saves me having to repeat myself over and over again. We must keep strong and help each other because otherwise we would break and then who would look after our sufferer? I have felt unwell today after a family visit Saturday to Sunday because of the strain I think, so back to routine tomorrow.

P

 

[cumbria35]

I feel terrible too when I tell my daughter about these daily stupid things which are so difficult to live with. He is lovely sometimes so I try to cling onto those moments and keep calm but firm when I have to protect him. The list I created is proving invaluable because I ask him to read it when things get difficult and it saves me having to repeat myself over and over again. We must keep strong and help each other because otherwise we would break and then who would look after our sufferer? I have felt unwell today after a family visit Saturday to Sunday because of the strain I think, so back to routine tomorrow.

 

[cumbria35]

What is this list you have created, sometimes think it a good thing my daughters live a long way away, no chance of them calling unexpectedly and seeing the tears and frustration.

 

[Grahamstown]

What is this list you have created, sometimes think it a good thing my daughters live a long way away, no chance of them calling unexpectedly and seeing the tears and frustration.

Someone suggested on TP that it might help to write down some of the items which you discuss with your OH so that when it all comes up again, which it does over and over again because of the short term memory loss, you can refer to it. In my case he reads it and is still able to understand it and then says, oh yes I remember. It can be anything and is particular to you. It probably doesn’t work for everyone but it does for me at the moment. My daughter is very supportive but lives about an hour away, not far but not close by. If she calls after a difficult incident I can’t hide it but I was pleased to have a good chat yesterday about Easter without mentioning him at all. I wanted her to go without too much worry about her father. We saw them last weekend and they are going to her husband’s family this weekend. We shall see other family this weekend but that brings its own problems. So I am hoping for the best.

 

[karaokePete]

Yes, Pete, the desire to "go home" is often a desire to find somewhere safe and escape the confusion of the dementia and the home they are seeking is often a childhood home..

In this case, though, I think it is more likely to be Capgras syndrome (where they think that the real place has been changed for a fake) or Reduplicative Paramnesia. Both of these things are caused by damage to the brain, including dementia.
This site gives a brilliant explanation of Reduplicative Paramnesia
http://sites.psu.edu/alexaugustpassion/2016/04/13/reduplicative-paramnesia/

I looked at that link and checked out Capgras Syndrome and they make interesting reading, thank you. However, I don't see the connection here as one produces an exact replica of an existing place and the other involves the misidentification of people, places, or objects, neither of which seem to be happening here. Having said that, I won't claim to be an expert.

 

[canary]

Its possible that we were looking at different posts @karaokePete
This is the one I was thinking of - it doesnt seem to be a desire to "go home", more that he thinks there is a duplicate house somewhere.

He is however, driving me nuts! He has it in his head we have another house so keeps asking about it, how did I buy it without telling him, then commenting on the other person that is living in it and they might take the furniture, who is paying the rates etc. This has been a recurring theme of his since last year, it is just getting worse and at points I just say I am not discussing it anymore - give him the same answer everytime - no other house, no other person, etal but somehow that does not compute!!!!! I have occassionally said where is this other house, and he says he doesn't know but sure he has seen it.

I find the way the brain works endlessly fascinating, although a nightmare to live with at times

 

[karaokePete]

Its possible that we were looking at different posts @karaokePete
This is the one I was thinking of - it doesnt seem to be a desire to "go home", more that he thinks there is a duplicate house somewhere.


I find the way the brain works endlessly fascinating, although a nightmare to live with at times

Interesting indeed, it could be a bit of both things going on in the thread. In my earlier career I had to study behavioral sciences, which I enjoyed, so I share your fascination. Yes, caring can be tough and after this morning with my OH I could hardly wait to get out on my afternoon walk today - came back for more punishment though!

 

[dogdayafternoon]

This forum gives so much support, just when I thought my wife had alzhimers for sure she had an almost normal day yesterday, we picked up her glasses and she was happy all day.
Today she was in a bad mood almost all day, it's getting blamed for things you have not done is the most hurtful.
Last night she had pains and I wanted to take her to the hospital but she refused, I awoke in the morning and all was quiet and I had a sudden feeling she had passed away in the night but she was ok just in a bad mood, now I feel guilty about not feeling sad about thinking she had passed.

 

[Grahamstown]

This forum gives so much support, just when I thought my wife had alzhimers for sure she had an almost normal day yesterday, we picked up her glasses and she was happy all day.
Today she was in a bad mood almost all day, it's getting blamed for things you have not done is the most hurtful.
Last night she had pains and I wanted to take her to the hospital but she refused, I awoke in the morning and all was quiet and I had a sudden feeling she had passed away in the night but she was ok just in a bad mood, now I feel guilty about not feeling sad about thinking she had passed.

I have found the same, that one moment my OH is the old person and the next minute someone I don’t recognise because of the abnormal behaviour. The brain seems to be working well in the morning but by the late afternoon until bedtime it is muddled and confused. From the TP forums I think this is called ‘sunsetting’, but it seems to me that it can be any time depending on the brain function.

 

[Mudgee Joy]

Thanks for that great advice !! It all helps - and it helps me to try to be more distant (clinical) in my thinking - not personal and reactive - but hard to keep up !

 

[karaokePete]

I have found the same, that one moment my OH is the old person and the next minute someone I don’t recognise because of the abnormal behaviour. The brain seems to be working well in the morning but by the late afternoon until bedtime it is muddled and confused. From the TP forums I think this is called ‘sunsetting’, but it seems to me that it can be any time depending on the brain function.

That's sundowning Two causes can be shadows in failing light causing confusion and distress, or tiredness. The shadows can be helped by closing curtains early and keeping the home well lit - this is what I have to do for my wife. Tiredness can be helped by letting them wind down slowly and maybe taking an afternoon nap like a child - to keep working well all morning can require a lot of mental energy for a person with dementia so the brain may try to shut down and cause the confusion. I encourage my wife to take a nap any time she feels tired. Hope this helps.

 

[karaokePete]

Thanks for that great advice !! It all helps - and it helps me to try to be more distant (clinical) in my thinking - not personal and reactive - but hard to keep up !

Remember to let it go and be easy on yourself if you fail and react in a way that makes you feel guilty or inadequate. It happens to the best of us and it certainly happens to me.

 

[Reman]

Am I the only one who wants to walk away from this person I do not know any more?

Am I the only one who does not know why she is staying?

No you are not the only one! I want to walk away from my OH especially today, after taking nearly 2 hours to get him up, having to washing all bedding including the duvet,. It's a cruel disease and often lonely, all most carers want is some acknowledgement, I have a friend who I can text anytime, and either rude to me or make fun of the situation just to chivvy me out of the self pity. It does help.

 

[DustyAlfie246]

Hey I am in same position although in the fairly early stages. My husband is slowly disappearing in front of me and I don't recognise him at times. Its a very lonely situation as he seems unable to converse sensibly anymore. He still takes the dog for a walk by himself, with his oyster on, but I don't know how long that is going to last. I have been married over 50 years and I feel so guilty about feeling like this. I am terrified I am starting to dislike him. I see other older couples about and wish we were like them. The guilt is awful.

 

[TedW]

My wife and I will have been married for 50 years this coming September. She was diagnosed with FTD 9 years ago. Currently she has almost no mobility, and no conversation and relies on my care 24/7. I have no assistance with care other than a friend who visits two mornings per week so that I am able to shop, pay bills etc. We do not live in the UK..
I deeply love my wife and it tears me apart to see her this way. I find the acting, being cheerful and upbeat in her presence and then the inevitable tears when alone the most difficult to handle. I hate being away from her, even for a short time, as I know no one else can give her the love and care that she deserves and know that at a future time I will be without her, our time together is precious, whatever the burden.
I am not being critical of other peoples attitudes and reactions to dealing with this terrible disease, we are all different and living our lives under different circumstance. I just prey that all of us have the strength to deal with our huge responsibility in the best way possible.

 

[Violetrose]

Yes I would like to walk away but I can’t so I vent my feelings on the forums. I can’t get used to the complete inability to talk rationally the way one would be able to if it was a physical illness. He thinks that he is being rational while saying things that show his complete lack of reason. The worst thing is that nobody else can understand unless they live with it as we all do because it is the day to day strain of dealing with all the little foibles that wear you out. Also if I am not careful I risk becoming completely obsessed by this and unable to think about anything else, which is one reason why I would rather not tell those I see all the time, because then I can’t talk about it to them.

Your statement resonates so strongly with me. It describes exactly how I feel. I am lonely and long for the partner, friend and good companion
I had for many years, now lost to dementia. His inability to think rationally and to understand things really frustrates me and shamefully I often get annoyed with him. I do not talk to any of our friends about the situation as it feels disloyal and I am quite a private person. My daughter knows how things are and is a loving support, but she lives in Australia. It has been helpful reading this thread, there is some comfort in knowing it is a common experience for many people.

 

[secrets]

As hard as it is I have never wanted to walk away although certainly my life is now very different in being tied to the house with no holidays or trips out as we used to do.Not only does my partner David have dementia,he now has no mobility and is bedbound,plus diabeties and epilepsy.i do pay for a lady to come in and give him a bedbath,but apart from that I do it all,and I must confess that dealing with a commode and the incontanance pants is not at all nice.i think the feeling of isolation is upsetting and I question all those 'friends' who we used to see and were so generous to are no longer in the picture.
David was the most amazing and clever man I have ever known,and he deserves the best I can do,and I will never resort to a care home,for better or worse it is my absolute duty to keep keeping on,for non of us are promised a rose garden.

 

[secrets]

As hard as it is I have never wanted to walk away although certainly my life is now very different in being tied to the house with no holidays or trips out as we used to do.Not only does my partner David have dementia,he now has no mobility and is bedbound,plus diabeties and epilepsy.i do pay for a lady to come in and give him a bedbath,but apart from that I do it all,and I must confess that dealing with a commode and the incontanance pants is not at all nice.i think the feeling of isolation is upsetting and I question all those 'friends' who we used to see and were so generous to are no longer in the picture.
David was the most amazing and clever man I have ever known,and he deserves the best I can do,and I will never resort to a care home,for better or worse it is my absolute duty to keep keeping on,for non of us are promised a rose garden.

 

[Grahamstown]

As hard as it is I have never wanted to walk away although certainly my life is now very different in being tied to the house with no holidays or trips out as we used to do.Not only does my partner David have dementia,he now has no mobility and is bedbound,plus diabeties and epilepsy.i do pay for a lady to come in and give him a bedbath,but apart from that I do it all,and I must confess that dealing with a commode and the incontanance pants is not at all nice.i think the feeling of isolation is upsetting and I question all those 'friends' who we used to see and were so generous to are no longer in the picture.
David was the most amazing and clever man I have ever known,and he deserves the best I can do,and I will never resort to a care home,for better or worse it is my absolute duty to keep keeping on,for non of us are promised a rose garden.

I too feel like you do about my loving clever man but I am conflicted because when he is irrational I do feel that I would like to escape ‘in the moment’ as it were. I sometimes wonder which is worse, a person who can function physically but then do things that are incorrect, or a person who is unable to do those things. You now have such a person and I don’t suppose for one minute that you would not prefer to be able to turn the clock back, but we cannot and have to cope with what we have. Wishing you strength in your life and care for your man.