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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
It’s 09.30am and I’ve just spoken to the home. Bridget isn’t down yet as she’s having her personal care.

I asked if Bridget misses me and they advise that she only really lives in the moment and, although she said “I love you” yesterday, she probably doesn’t share that depth of feeling I’m feeling. But, they added, you never know what the brain does so I’m left confused once more.

I’m going in to visit today and again tomorrow but I realise that by doing so I can’t change anything; for Bridget it’s one day at a time, probably moment to moment, but for me I have years of memories, a grieving present and a future longing for someone I can’t have.

I can’t think of any other condition that even comes close to dementia for tying us all into knots and messing with our emotions. How much cleaner it is (however much grief it brings) that people die quickly or, at least, are dying and fully sharing their love for one another. So much more straightforward.
Peter
 

blackmortimer

Registered User
Jan 2, 2021
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How eloquently you put it, @Dutchman - "years of memories, grieving present, future longing". I can relate to that and I'm sure I'm not alone. I don't really understand science (I'm old enough to have had a "classical" education that didn't include science subjects, only a minimum of maths!), but can accept what scientists tell me - that dementia is a sort of last frontier for medicine; they know what seems to happen in the brain, but not why so they can't yet cure it or prevent it. That's why we're inclined to think of the patient as having been taken prisoner by dark forces - demons or enchantresses or whatever your mythology prefers - and that if we could just find some magic key to release them, bingo - they'd be back with us again just as they were. And being human we're programmed to try and find that key even if science suggests there isn't one. That's why you're impelled to keep on visiting Bridget regularly. Every so often she says something that tells you she's still in there and it's worth persevering. I think you should persevere, because, from everything you've written, I think you need to. I salute you .

God bless
 

Dutchman

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May 26, 2017
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Devon, Totnes
So, having a day off today from visiting.

I went in yesterday and the home suggested I bring in some cooler clothes ( skirts and tops) which I sorted out when I got home. Problem is that Bridget has lost a lot of weight and she’s now a 12 not a 16. So I went to M and S this morning and I’ve dropped off £160 worth of clothes off at the home. They are so busy getting residents up and dressed that no one really had time for me - completely understandable.

Now I’ve got home and I’m worried that the new tops are too small ( ease of getting off and on). All these small time concerns turn into big worries when I need to get everything just right. I need to control stuff so I can relax.

I’ll phone later to see if the clothes fit.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Good point.

I hope this doesn’t come across as shallow but something made me very sad and upset yesterday.

I was asked to help give Bridget a cooling shower and we went into the bathroom and got her undressed. She is quite compliant. This is the first time I’ve seen her naked in almost 2 years, although I helped with the showering when she first went into the home in 2019.

She’s lost so much weight and to be honest I was shocked. And then I felt such tenderness and sadness for her seeing what dementia had done to her and I just wanted to protect and care for her. Not only has dementia ravaged her mind it’s also diminished my beautiful Bridget’s body.

Such changes have brought home to me how much she’s deteriorated since going into care. But it would be no different if she’s was here at home with me. Probably worse.
 

Old Flopsy

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Sep 12, 2019
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Hi @Dutchman - yes it certainly is a shock when you see how much weight has been lost. I made a short video of OH the other day walking into the garden with his walking frame and he is like a skeleton compared with three years ago. He is just skin and bones and his arms are scarily thin.

At the moment he is in hospital with kidney damage- he had been retaining urine and they have now fitted a catheter to drain the bladder - what a relief that must be as he was in acute pain. I can't wait to hear he is back in the Home where he can relax.

I do hope Bridget is able to wear her new cooler clothes. This heat is exhausting.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I just want to take this opportunity to praise care homes. I went in early to Bridget’s home yesterday to drop some new clothes off before they got her dressed. They were very busy getting people up, personal care, and handover from the night before but they still had time for me and my concerns.

Later they phoned me to tell me how good she looked in her new clothes and they’d taken some pictures.

I miss my Bridget very much, and life is so much less without her, at least she’s cared for and valued in the home and it’s a comfort. I have to say that as my life alone is now the normal I feel at times very strange and awkward about it. It’s almost like me and Bridget never happened.

Three years of dementia behaviour and two years in the care home have affected my memories. All these years of Bridget not really loving and caring for me so I don’t remember what it what like to be loved by her day by day.

I had a dream last night where I was with someone else in a loving married relationship. No one I could identify. It was so real. Shows I crave this affection and I feel guilty for even dreaming it. I need Bridget in my dream and it’s impossible and like holding water.

Peter
 

Dutchman

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May 26, 2017
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Devon, Totnes
This is how grief and dementia messes with your mind.

Lately I’ve noticed that Bridget is making more sense with her words. Instead of muttering she is actually saying a word or a very short sentence that is the correct response to what I say. A facial expression today was the correct one. She wants to kiss me and ( please forgive my intimate honesty) poked her tongue out. She lent against my arm to rest her head. Carry on like this and she’ll be on her way to recovery!

I know this isn’t going to happen ( it would be a world first) but I so long for her to be my love again. Take a bit of my brain out and put it in hers!

I realise that this is probably a level stage where she is at ease and able to assimilate a little bit of recognition of me and some caring feelings. I also realise things could go downhill at any time. I going to make the best of what’s happening now without attaching strongly to it. That’s the plan - heaven knows if it will be like that!

Hope none of you get uncomfortable at my outpourings
Peterx
 

kindred

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Apr 8, 2018
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This is how grief and dementia messes with your mind.

Lately I’ve noticed that Bridget is making more sense with her words. Instead of muttering she is actually saying a word or a very short sentence that is the correct response to what I say. A facial expression today was the correct one. She wants to kiss me and ( please forgive my intimate honesty) poked her tongue out. She lent against my arm to rest her head. Carry on like this and she’ll be on her way to recovery!

I know this isn’t going to happen ( it would be a world first) but I so long for her to be my love again. Take a bit of my brain out and put it in hers!

I realise that this is probably a level stage where she is at ease and able to assimilate a little bit of recognition of me and some caring feelings. I also realise things could go downhill at any time. I going to make the best of what’s happening now without attaching strongly to it. That’s the plan - heaven knows if it will be like that!

Hope none of you get uncomfortable at my outpourings
Peterx
Peter, thank you. Your recent posts have been like exquisite poetry. Kx
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
How we long with all our heart for things to be different. Any tiniest scrap of affection, a facial expression, a smile, a meaningful word and I have both joy and sorrow. Of course I want Bridget to love me again but I can’t take her away and rekindle what’s not there.

Her apparent show of knowing me, of wanting kiss me and rest her head on my shoulder is lovely, of course it is, but I come home finding it difficult to work out what’s going on. All those expressions of love we had for each other were given without any doubt. Now dementia gets in the way and I find I’m questioning what she is or not thinking.

When Bridget holds my hand, leans forward for a kiss and rests her head on me I have so much affection for her that it becomes an ache, and i know I’ll start crying if I don’t get up and get her a drink or tidy her room or something.

peter
 

Stacey sue

Registered User
Jan 24, 2020
108
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Hi, I have exactly the same,although I do kiss and cuddle Dave,I can’t help myself?That longing for the person he was is all consuming. What a cruel evil disease this is.hopefully not as bad for them because they are so unaware? Just hanging on for the odd smile,no words just hanging in there. Have to post on here because few understand. Thanks all.x
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Not a good day visiting today as one of the residents passed away ( in her room) while I was there. The family (daughter and son-in-law) are distraught and the staff are busy with the arrangements. The staff are close to each and everyone so it’s very sad and I feel for their loss.

Fortunately Bridget is blissfully unaware of all this . Also, not a good visit for me because Bridget seems to understand me and responds with meaningful words and expressions. This trend is new and I’m not sure what’s happening in her brain because previously it’s been just muttering.

I see an opportunity and dive straight in like a lunatic and say “I miss you and love you so much” hoping she’ll respond and then I say “why did you have to go and leave me, I’m so lonely without you”. She looks at me in incomprehension, says “yes” and smiles.

That’s it, I start to cry and go up to her room alone and ball my eyes out. Eventually I come downstairs and we have dinner and I’ve got through another Sunday visit. So the dementia wins again and tempts me and fools me and leaves me confused.

peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I’m having a day off from visiting. I looked forward to it this morning, I phoned the home and checked and Bridget is ok and I should be glad. All boxes ticked you might say, have a good day off.

But it’s now 12.45 and I’m fed up with my own company and I desperately want to see her again. Seeing her is like a drug that I gladly take even though I have often have distressing times when I visit. That’s why I phone each day to maintain contact, to somehow be with her. In many respects it would be easier if the home was far away and not just 15 minutes away.

Being lonely never gets any easier and it would be strange if I didn’t crave Bridget’s love and companionship. This is normal I’m told but being normal doesn’t ease the misery of losing Bridget. Perhaps I should stop kissing her, holding her, saying I love you, distance myself from it all. Would that help? It’s something that I can’t naturally do.

So one day merges into the next.
 

kindred

Registered User
Apr 8, 2018
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I’m having a day off from visiting. I looked forward to it this morning, I phoned the home and checked and Bridget is ok and I should be glad. All boxes ticked you might say, have a good day off.

But it’s now 12.45 and I’m fed up with my own company and I desperately want to see her again. Seeing her is like a drug that I gladly take even though I have often have distressing times when I visit. That’s why I phone each day to maintain contact, to somehow be with her. In many respects it would be easier if the home was far away and not just 15 minutes away.

Being lonely never gets any easier and it would be strange if I didn’t crave Bridget’s love and companionship. This is normal I’m told but being normal doesn’t ease the misery of losing Bridget. Perhaps I should stop kissing her, holding her, saying I love you, distance myself from it all. Would that help? It’s something that I can’t naturally do.

So one day merges into the next.
Peter, I would say go on being as close to Bridget as you can. I know it’s an agony but it will help your memories so much later on. Kxx
 

blackmortimer

Registered User
Jan 2, 2021
259
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I agree with @kindred, Peter. Hang on to whatever you can and be grateful for it. For myself, I miss the sheer intellectual stimulation of the Margaret that used to be, being able to talk politics, religion, art, philosophy and revel in her rebellious wit. All that has gone and I know it won't come back. I'm beginning to accept it and the fact that I haven't until lately been able to visit much has, in a strange way, helped. I'm not very good at small talk with Margaret because that was never our relationship; so now that I can't launch into a full throated deconstruction of what the hell the Government thinks it's doing or the latest asininity from the Archbishop of Canterbury/Pope/Chief Rabbi or whoever, then I'm lost and visiting becomes just an exercise in keeping in touch with the wonderful staff at the Nursing Home who do such wonderful work. So go for it, Peter, follow your instincts.

God bless,