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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I’ve probably said this before. The saddest thing I’m feeling now is that I have a wife who cannot love me anymore. Dementia has killed that deep mysterious feeling when you love one another. I miss being loved - simple.

And a regret I have is that we didn’t express our love enough when times were normal. But we always took for granted that we had forever but, really, the shows of affection could have been more. I go to visit and I say repeatedly to her, without any hesitation, that I love you and miss you. She smiles and sometimes says ok. I’m trying to “get through” I suppose, to enter that damaged brain, to get her to understand that I love her. It’s not going to work I know but she must know that I’m trying. She say “I’m lovely” so that’s something I suppose.

I’m desperately trying to maintain any special connection that’s left and that makes it uncertain, trying, upsetting certainly and altogether heartbreakingly sad.
 

kindred

Registered User
Apr 8, 2018
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I’ve probably said this before. The saddest thing I’m feeling now is that I have a wife who cannot love me anymore. Dementia has killed that deep mysterious feeling when you love one another. I miss being loved - simple.

And a regret I have is that we didn’t express our love enough when times were normal. But we always took for granted that we had forever but, really, the shows of affection could have been more. I go to visit and I say repeatedly to her, without any hesitation, that I love you and miss you. She smiles and sometimes says ok. I’m trying to “get through” I suppose, to enter that damaged brain, to get her to understand that I love her. It’s not going to work I know but she must know that I’m trying. She say “I’m lovely” so that’s something I suppose.

I’m desperately trying to maintain any special connection that’s left and that makes it uncertain, trying, upsetting certainly and altogether heartbreakingly sad.
Peter, I so understand. I wrestle with not holding hands with Keith enough. I used to spend hours of our time together just holding hands trying to make up. I know you will understand.
Kx
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Kindred, always there to understand ❤️.I was going to the home today but I’m very tired and I’ve made excuses to the staff and now I feel guilty. It’s almost like Bridget will
know ( she won’t) that I’ve let her down. And also I sometimes feel that if I leave it too long she’ll really will forget me and what little connection we still have will disappear.
We beat ourselves up all the time ( well I do ) over not doing enough about a situation of which we have very little control and one that’s left to others.
Thanks for everyone’s replies
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
It’s Sunday and I’m not great. Sunday’s are always a struggle as they remind me of the situation when Bridget used to demand a trip to the hospital to look for “me “.

I’ve gone back to bed and resting. I just wish there was some form of resolution, a degree of acceptance on my part that would give me comfort. My minds a mess sometimes and I imagine her getting better, her speech getting better and we could lead a life. Crazy I know but in times like now I’m so lonely for her that I can’t be rational and sensible.
 

blackmortimer

Registered User
Jan 2, 2021
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I know exactly what you mean, @Dutchman . I think we have to have hope in a sense. Perhaps it's the only way we keep going. Yesterday when I was with Margaret most of the time she was in a fairly deep sleep. Then she awoke to the extent that she ever does these days and I gave her some milk shake and a calorie shot which had been left for her. Towards the end of that she asked a question in her garbled dream-speech which seemed in the moment to make some kind of sense and I literally felt my heart leap. Just for a moment I thought "is she coming back to us?" but of course hard as I tried to continue some kind of conversation it didn't work and eventually she fell asleep again.
It's a bit like Sleeping Beauty. Where's the handsome prince? But seriously, I think we need some kind of hope, no matter how unrealistic, just in order to keep going. Perhaps that's how we're programmed at least those of us who soldier on against the odds.
So, take comfort, @Dutchman . You're nor alone. God bless
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hello @blackmortimer. How right you are. Yes we do need hope but we hope for that that cannot happen but we hope anyway.

I’ve decided to get the caravan ready for selling it so I’ve spent most of the morning clearing and cleaning. Of course, what happens? I start to have memories of the times we spent using it and I see her sitting in it doing a word puzzle, on her phone, making a drink and us enjoying the holiday. It’s been a tough morning but it’s done now. Actually our last trip away she didn’t enjoy as she was on the edge of dementia anxiety. Now she doesn’t remember the caravan or our holidays at all.😡😥
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
It only takes the smallest spark and I’m upset. I’m trying my hardest to speak loving words to her over tea time and get a loving response back and suddenly, because she doesn’t want me to help her eat or drink, she looks daggers at me, at real hurtful look, and I have to leave her and go to her room crying.

I’ve got years of this possibly and it seems never ending. I’ve driven home thinking that it might be good if I die first and I’ll be spared the agony of her death.
 

notsogooddtr

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Jul 2, 2011
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It only takes the smallest spark and I’m upset. I’m trying my hardest to speak loving words to her over tea time and get a loving response back and suddenly, because she doesn’t want me to help her eat or drink, she looks daggers at me, at real hurtful look, and I have to leave her and go to her room crying.

I’ve got years of this possibly and it seems never ending. I’ve driven home thinking that it might be good if I die first and I’ll be spared the agony of her death.
Do you think the visits are a bit too intense? My late FIL used to visit his wife in her NH every day for most of the day. He could never seem to just'be', he had to to wipe her face, plump her pillows, help her to eat or drink. He wanted to be useful. Unfortunately she could get upset and agitated, visits were much more successful when he listened to advice and could just sit and read, watch TV or listen to some music.
 

blackmortimer

Registered User
Jan 2, 2021
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I'm a bit like that, @notsogooddtr. I tend to busy myself with tidying up Margaret's bedclothes and seeing that she has something to drink but in my case the staff seem to approve. I usually go in the afternoon when it's quieter and so as not to get too much in the way. Once I've sorted her out I do find myself sitting back and reading the news or whatever on my smart phone. However, to address @Dutchman's point, I too have had the odd occasion when Margaret has looked daggers at me particularly when I've been trying to get her to drink or eat when she didn't want to and objected to me trying to push her. It is a bit of a slap in the face, but I've learned not to take it too much to heart. It's almost certainly the dementia and not personal. I also think that to the extent that she recognises me, it's only in my guise as carer. After all, I was sole carer for 5 years or so. The same might apply in your case, @Dutchman
so try not to be upset. I know how hard it is. God bless
 

notsogooddtr

Registered User
Jul 2, 2011
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I'm a bit like that, @notsogooddtr. I tend to busy myself with tidying up Margaret's bedclothes and seeing that she has something to drink but in my case the staff seem to approve. I usually go in the afternoon when it's quieter and so as not to get too much in the way. Once I've sorted her out I do find myself sitting back and reading the news or whatever on my smart phone. However, to address @Dutchman's point, I too have had the odd occasion when Margaret has looked daggers at me particularly when I've been trying to get her to drink or eat when she didn't want to and objected to me trying to push her. It is a bit of a slap in the face, but I've learned not to take it too much to heart. It's almost certainly the dementia and not personal. I also think that to the extent that she recognises me, it's only in my guise as carer. After all, I was sole carer for 5 years or so. The same might apply in your case, @Dutchman
so try not to be upset. I know how hard it is. God bless
I think my FIL needed to learn when to back away, he sometimes became quite desperate especially about fluids. Like you he had looked after his wife at home for several years,it's hard to let go
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
How like my circumstances. It’s so hard to let go, to realise that you’re not needed as much. I try to squeeze any amount of recognition out of Bridget by trying to recall past events, even really important ones like parents, childhood friends, school. Nothing. I do need to calm down - I’ll try that. Relax more when I go.

I’ve come to the conclusion that the constant walking is a search for something, like trying to resolve the anxiety she feels. It’s a combination of the inability to communicate and trying to make sense of her world and this sets up an irritation that make her fidget that can only be resolved by going somewhere , by doing something. And walking is that only thing she can do. Anyway, that’s my theory.

Bless you all, Peter
 

wightdancer

Registered User
Mar 15, 2017
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You are doing the right thing, simply walking with someone with Alzheimer's (who can walk), is the best gift you can possibly give them; walking gets the blood flowing and stimulates the brain. Good on you.
 

kindred

Registered User
Apr 8, 2018
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You are doing the right thing, simply walking with someone with Alzheimer's (who can walk), is the best gift you can possibly give them; walking gets the blood flowing and stimulates the brain. Good on you.
It does! I used to sing. Together we go, together we go, together together together we go … any tune you like. Link arms and sing. It really feels like togetherness.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
It’s 10.30 am and I’ve checked with the home and Bridget has had her shower , the hairdresser is doing her hair and I’m told she’s slept through the night and I saw she looked good in the new clothes I bought her from
M and S.

So all things considered I’m taking a day off from worry, anxiousness, self pity, longing and all the other many feelings I have - that’s the plan anyway!
It’s a lovely day here in Totnes Devon and I’m taking it easy. Who knows when the next meltdown will occur and I’ll be a grieving mess on the sofa?
Love to all my friends here❤️Peter
 

blackmortimer

Registered User
Jan 2, 2021
284
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Lucky Totnes !!! It's misty/murky here in the far East. I've just come in from raking leaves. It felt extremely autumnal and as ever makes me feel sad. I think you're doing the right thing, @Dutchman. All's obviously well at the home, so treat yourself to a day off and enjoy the weather. I shall go this afternoon, but I'm planning a day off tomorrow as I have to get a flu jab and will take the opportunity to do some other jobs in time as well. I'm going to be firm with myself and not feel obliged to go to the home every day. After all, I tell myself, they know how to get hold of me and I can be there in 30 minutes. I'll see how it goes. God bless everyone.
 

Dutchman

Registered User
May 26, 2017
1,449
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73
Devon, Totnes
I’ve just driven for an hour and it’s times like this that I realise I miss her when she’s not next to me talking away while I drive. The seat is empty and always will be. Also I’ve just spent a frustrating time arranging car insurance where Bridget would always help and advise. There’s no one else to keep you company and give support.

I’m finding sometimes I get quite hard and cynical about things now, I get impatient and frustrated. The whole business of Bridget having dementia and losing a loving wife has left me vulnerable to the littlest upset.
 

Dutchman

Registered User
May 26, 2017
1,449
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73
Devon, Totnes
I think I speak for many here but I’m fed up with being fed up. It’s wearing and affects all I do.

I tried being less anxious today when I saw Bridget but I soon went back to longing mode. She’s my wife with all that means and I’m what? and that upsets me to know she can’t make the connection of me being Peter. I really believe she’s sees me a occasional carer. In fact she’s more animated when she passes a long time member of staff. Why wouldn’t she? She sees them more than me and gets to know them better.
My daughter thinks I should visit less and can’t see the value in going as often. But she’s not me, she cannot comprehend what I’m feeling deep down and hasn’t the imagination to put herself in my place 30 years on and losing her husband to dementia.
 

blackmortimer

Registered User
Jan 2, 2021
284
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I think the value of visiting id for you rather than Bridget, @Dutchman . I certainly think that Margaret sees me as just another carer but I've learned not to let that worry me. I know well the impetus to go every day I deliberately decided to have today off, partly because I had a flu jab booked and partly because the sun came out and I thought some tidying up of the garden would do me good. Now I'm not so sure. I feel I've let Margaret down somehow although I know with mt rational brain that she probably didn't notice. I think we all have to do what best suits us and not overthink it. God bless
 

DesperateofDevon

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Jul 7, 2019
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I think you make a good point, @Violet Jane . There is a difference between spouses/partners ad other family members. I came to this forum posing the question "is it time to let go?" That was when Margaret transferred from hospital to nursing home and Covid was at its height, effectively preventing visits and I was thinking along the lines she is now well cared fro, I can't do anything useful, can't even visit so is this a time to reevaluate? Even when we were allowed visiting it was only for 2 named relatives and at that time I thought it only right for our 2 adult children to be those named relatives. They could do the visiting, come on to see me and report the situation. Which worked well fora while but the children's visits became less frequent and I realised that given that by this stage their Mother wasn't really the Mother they remembered, they probably preferred to remember as she had been rather than as she was now. So when visiting restrictions were eased and I could start visiting I began to do so partly because we had a wake up call when Margaret's health took a sudden downturn and we had to make a decision to agree to "palliative care only" because we knew Margaret wouldn't have wanted to be transferred to hospital for "investigations" which was the only alternative. Because she had been refusing to eat or drink and the nursing home couldn't force the issue they suggested that we visit at any time and use the visits to get Margaret to at least drink. So, my original question was answered by events - it wasn't time to let go. I was needed and I realised that even though Margaret no longer seems to recognise me, she does respond when I offer her drinks and the "calorie shots" prescribed by the dietitian which substitute for normal meals. As a result the "marbling" to her legs which had been alarming, receded and then vanished, her complexion improved and I was made aware that I was still useful, necessary maybe, so I didn't let go and am grateful I didn't.

On the other side of the coin, because I'm going every day, things are now under an even keel and Margaret is away in a sort of dream-world of her own, I have the feeling that my son and my daughter, particularly the daughter don't want to see their Mother as she now is and are reluctant to visit unless I press the issue which, to be frank, I am reluctant to do, partly because I know how they feel and partly because I would prefer that their memories of their Mother are of the person who was always central to their lives for so many years.

All of which is, I think, a convoluted way of answering your question "Yes and No"!! God bless,
I can appreciate how your children feel, I do not want to visit my Mum. She no longer recognised me or responds to me. Its so upsetting , & I feel guilty for not wanting to go
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
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I think I speak for many here but I’m fed up with being fed up. It’s wearing and affects all I do.

I tried being less anxious today when I saw Bridget but I soon went back to longing mode. She’s my wife with all that means and I’m what? and that upsets me to know she can’t make the connection of me being Peter. I really believe she’s sees me a occasional carer. In fact she’s more animated when she passes a long time member of staff. Why wouldn’t she? She sees them more than me and gets to know them better.
My daughter thinks I should visit less and can’t see the value in going as often. But she’s not me, she cannot comprehend what I’m feeling deep down and hasn’t the imagination to put herself in my place 30 years on and losing her husband to dementia.
You go to show you love & your marriage vows still tie you together.
Children & parents have a different relationship, watching a parent decline with dementia is heartbreaking & as children we look for recognition, that reassurance. A parents love is non conditional as is the love between husband & wife that you feel