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

[LadyA]

I was my husband's second wife. He was widowed when we met, and was 30 years older than me. He remembered his first wife dying. He didn't remember marrying me. He didn't know my name. But he would regularly say, with a smile, "you are mine". Once, he asked what my name was, and I told him my first name, assuming that's what he meant. "No" he said. "Your other name". So I told him. He laughed delightedly and said "Ha, same as mine! No wonder I like you!"

He didn't know who I was, but I count myself lucky. He always knew me as someone he loved very much, and referred to me as "The One". And to the day he died, his face would just light up when he saw me coming.

 

[Mudgee Joy]

Thanks @karaokePete for your words - and to everyone here on TP. At the end of the day I like to browse through the comments, learn from some, feel for others- it’s a great sister-brother hood that helps us all grow in peace and acceptance. I would love to have a few of you in my town so I could call in and give you encouragement, share a cuppa and even perhaps a laugh.

 

[Shedrech]

Oh dear, I live with a man who has early onset dementia, I don't know what to do as he is aggressive today. Keeps making messes every where, I am so stressed, My beloved mother has just died and i am struggling with that. I will have sufficient money to be able to buy myself a small home if I move north, I just don't think I can cope with, I feel so bad even thinking about going away, help.....

Hello @March
so sorry to read of your mother's death; my condolences - it's tough, isn't it to deal with grief for a loss and the grief of seeing someone changing and behaving in ways that you just never expected
I hope the day improved
maybe you called the Helpline and had the chance to speak with one of the operators; if not, maybe call when you have time, the folk there are understanding and have a lot of knowledge to help
and don't be afraid to call the police if you feel threatened; they are much more used to such situations than we realise, and can themselves make referrals to get help for you
if you haven't yet, do contact your Local Authority Adult Services to have an assessment of your man's care needs, and a carer's assessment for yourself - a care package with maybe some day care/ respite may give you some time for yourself
now you've started, keep posting; it helps to share

 

[canary]

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?

Yes, it is the dementia.
It not denial.because they truly, truly believe that they have done things and you have done nothing. Their memory is playing tricks on them and in their memory things are quite different to they way we know they are in real life. But if we try and correct the way they remember things, they dont believe it because they have all these false memories created by dementia in their heads. It may not have been pride that stopped him asking for a napkin, but confusion and an inability to work out what he needed.

 

[imsoblue]

Yes, it is the dementia.
It not denial.because they truly, truly believe that they have done things and you have done nothing. Their memory is playing tricks on them and in their memory things are quite different to they way we know they are in real life. But if we try and correct the way they remember things, they dont believe it because they have all these false memories created by dementia in their heads. It may not have been pride that stopped him asking for a napkin, but confusion and an inability to work out what he needed.

I appreciate that @canary. I hope I'll handle it better next time. It's so new to me and he seems so normal!

 

[karaokePete]

I appreciate that @canary. I hope I'll handle it better next time. It's so new to me and he seems so normal!

I read your original post in this exchange and I just wondered if you had noticed a link I had posted earlier in this thread. It’s a link that’s often shared on the forum as it gives useful insight and advice. In case you didn’t see it I thought it might help to post it again. It’s one I have read more than once myself as it’s easy to be so overwhelmed by dementia that best practice can be forgotten in the heat of the moment. It’s this one:-
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I hope it helps you as things get very tough for us carers at times. Forgive me if you’ve already seen it.

 

[canary]

I appreciate that @canary. I hope I'll handle it better next time. It's so new to me and he seems so normal!

Yes, thats the problem. It is so easy to try and relate to him the way you would always previously done. I still get seduced into doingthis, even though I know its not going to work and its actually better if I just keep the conversation light and dont comment on the weird stuff.

 

[Lawson58]

I think what I really hate most is when my husband can totally pull the rug from under me in the space of one minute flat. Knowing that he just doesn't get it is no consolation at all.

As I mentioned in my earlier post, we were both addicted to travelling and of course with the Alzheimer's, cardiac arrest and heart failure, several surgeries, bleeds and recently a bout of cellulitis, any idea of a decent holiday for either of us went out the window. No more travelling.

During a recent conversation, he informed me that he might not play so much bridge next year. I was surprised by that and asked him what he was planning to do instead. He replied that he understood that I am unable to travel but he thought that next year he might do a little travelling, somewhere like Tasmania sounded good for a few days and he would really love to go to Northern Territory.

I know very well that he doesn't understand how sick he really is , that there is no comprehension or empathy for the impact of it on my life and mostly I try not let it bother me.

I have coped with all his illnesses and I have learned to ignore his paranoia but this gets beyond me.

 

[canary]

Ha! @Lawson58 - we both know that the travel"plans" are pie in the sky . Do you think that the real reason he is thinking about cutting back on his bridge playing is because he is finding it too hard now?

 

[carolynp]

I think what I really hate most is when my husband can totally pull the rug from under me in the space of one minute flat. Knowing that he just doesn't get it is no consolation at all.

As I mentioned in my earlier post, we were both addicted to travelling and of course with the Alzheimer's, cardiac arrest and heart failure, several surgeries, bleeds and recently a bout of cellulitis, any idea of a decent holiday for either of us went out the window. No more travelling.

During a recent conversation, he informed me that he might not play so much bridge next year. I was surprised by that and asked him what he was planning to do instead. He replied that he understood that I am unable to travel but he thought that next year he might do a little travelling, somewhere like Tasmania sounded good for a few days and he would really love to go to Northern Territory.

I know very well that he doesn't understand how sick he really is , that there is no comprehension or empathy for the impact of it on my life and mostly I try not let it bother me.

I have coped with all his illnesses and I have learned to ignore his paranoia but this gets beyond me.

What is so ultra infuriating (at least to me) about this is your OH's willingness to disappear into the far blue yonder, leaving you behind! So blissfully unaware, not only of the impossibility of his going anywhere, but also of his supreme selfishness in contemplating doing so. And the lack of reciprocity for the phenomenal effort you are putting in, in order to care for him - and to keep him on such a nice, even keel that he can even think of travelling by himself! Isn't it breathtaking when they say something like this?!

My sympathies. It all sounds so familiar to me. Perhaps I'm overreacting ... sorry if so ... but honestly!!!

 

[canary]

The loss of empathy is hard. OH is truly, truly unaware of how things he decides to do are affecting me, is totally unaware of how much I do and only understands things as how they relate to his own desires and comforts. He has lost so much.

 

[Nandi]

I think we all wish at times we could runaway there is such a lack of empathy I am battling a urine infection on antibiotics not feeling great but he is still waiting for me to take him out u just feel you are on your own I know he can't help his attitude but that doesn't help.

 

[carolynp]

I think we all wish at times we could runaway there is such a lack of empathy I am battling a urine infection on antibiotics not feeling great but he is still waiting for me to take him out u just feel you are on your own I know he can't help his attitude but that doesn't help.

Yes exactly, @Nandi, we all know they can’t help the lack of empathy but that doesn’t make it any easier for us as carers. So sorry,@canary, it sounds ghastly for you. Hugs to both from C. xxx

 

[maryjoan]

The loss of empathy is hard. OH is truly, truly unaware of how things he decides to do are affecting me, is totally unaware of how much I do and only understands things as how they relate to his own desires and comforts. He has lost so much.

And so have you Canary. The loss of empathy is common - I have it with my OH- and is absolutely tragic. You are left feeling like a servant most of the time. It was explained to me that OH lives in his own little bubble now, and as long as everything is OK there, he is unconcerned about anything else.

In our case, the only thing saving my sanity is that he does love 'our' grandchildren. They are mine really, he does not have any of his own, but they call him Granddad and he loves being Granddad. You would think that these two small children were the most beautiful,most clever, and best behaved children ever invented according to him ! They are super, but not quite as perfect as he thinks!!

 

[Lawson58]

T

Ha! @Lawson58 - we both know that the travel"plans" are pie in the sky . Do you think that the real reason he is thinking about cutting back on his bridge playing is because he is finding it too hard now?

I know what you mean Canary, but these plans of his are supposedly for next year and he still seems to be enjoying it. I think it's just the travel bug has resurfaced again and he still thinks he can toddle off and do what he wants.

He did say that he was going to miss our pets while he was away so I suppose that really puts me in my place!

 

[carolynp]

T

I know what you mean Canary, but these plans of his are supposedly for next year and he still seems to be enjoying it. I think it's just the travel bug has resurfaced again and he still thinks he can toddle off and do what he wants.

He did say that he was going to miss our pets while he was away so I suppose that really puts me in my place!

Worse and worse!

 

[karaokePete]

The loss of empathy is hard. OH is truly, truly unaware of how things he decides to do are affecting me, is totally unaware of how much I do and only understands things as how they relate to his own desires and comforts. He has lost so much.

That is the hardest thing for me and it has had me in tears more than once. I have got over(I think), but cannot forget the recent occasion when my wife called me her carer rather than her husband. She will never acknowledge that I do anything 'extra' for her so I just felt like asking her why she needs a carer, though I just 'bit my lip' instead!

 

[imsoblue]

I read your original post in this exchange and I just wondered if you had noticed a link I had posted earlier in this thread. It’s a link that’s often shared on the forum as it gives useful insight and advice. In case you didn’t see it I thought it might help to post it again. It’s one I have read more than once myself as it’s easy to be so overwhelmed by dementia that best practice can be forgotten in the heat of the moment. It’s this one:-
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I hope it helps you as things get very tough for us carers at times. Forgive me if you’ve already seen it.

Oh @karaokePete, I DID read it. I read it right after I posted what I said and also put it in my files and made a copy for my purse! I wanted to find it again in the forum and post it with a "Nevermind, I have just read something and here it is." Thank you thank you thank you. The timing was perfect for me. You came through when I needed this piece of advice.

 

[karaokePete]

Pleased to be of assistance

 

[Mudgee Joy]

That is the hardest thing for me and it has had me in tears more than once. I have got over(I think), but cannot forget the recent occasion when my wife called me her carer rather than her husband. She will never acknowledge that I do anything 'extra' for her so I just felt like asking her why she needs a carer, though I just 'bit my lip' instead!

I am convinced we can’t judge the Dementia person - each night my H doesn’t know he is home - he wants to pack etc - so this morning- when he was at his best, I tackled him about it - he very genuinely does not remember his night personality and became upset to think I didn’t know he is home !!
But is terribly hard to manage that when you love the person and they are distant and strange.