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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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0
73
Devon, Totnes
Well done @Andy54 for moving back into your bed. At the moment me doing so would bring back memories of arguing about washing, lack of changing clothes and the absence of her next to me. One day , who knows. I wonder what will help me change my mind?

My daughter’s help me today with crockery that wasn’t used for years. Gradually, baby steps.

im going in this afternoon to discuss volunteering at the home. Wish me luck
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,227
0
Merseyside
The approach I'm taking with D's things is to start getting rid of those clothes which I know haven't been worn for several years ( the things that she should have (and probably eventually would have) sent to the charity shop. I thought this might be difficult but I've actually found it quite therapeutic in a way. This still leaves 2 large wardrobes full of all of her favourites which will be staying for the foreseeable future! D was a textile artist and my big problem is the huge stock of materials she had built up, I haven't a clue where to start with that. I did move back into the main bedroom more or less straightaway and I'm glad I did, Being in the room that we shared together for so long feels more like home and even though she is no longer there it somehow makes me still feel close to her. I guess we all have our different strategies to cope.
Best wishes Andy
@Andy54 Could you donate the materials to a local school? We are always incredibly grateful for donations to boost our limited supplies.
 

Andy54

Registered User
Sep 24, 2020
63
0
@Cat27 I was thinking along those lines once I've sorted it all out,schools, community groups etc. D was a bit of a hoarder at the best of times and aquired stuff rather haphazardly so it may take me a while to sort through the myriad of boxes. Some of the more specialist items I'll need to identify first !
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I’ve made arrangements to volunteer at Bridget’s home starting next Wednesday.

The whole purpose is to not only help out but to be able have free access to Bridget during the two hours. The staff are well aware and mindful of the need of how to balance jobs with my time with her.

I only hope I can manage the additional emotions that may crop up but I think I should try hard as I think it may be of some benefit. I went today and Bridget was pleased to see me as she said to the women filing her nails” he’s a good one”. Brilliant. I wish she’d had said that about me when she was at home here making my life a misery back in 2019!

peterx
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
What a awful morning

Bridget fell again this morning and I’ve only just got a call from the home to say she’s ok and she up walking again. Paramedics/ district nurse/several staff all on hand. If she’s going to fall at least she’s in the right place!

But of course it begs the question, how many more times and to what severity? Dementia is terminal and how long is a piece of string when it comes to how long has Bridget got before it really gets worse?
 

jennifer1967

Registered User
Mar 15, 2020
6,326
0
Southampton
What a awful morning

Bridget fell again this morning and I’ve only just got a call from the home to say she’s ok and she up walking again. Paramedics/ district nurse/several staff all on hand. If she’s going to fall at least she’s in the right place!

But of course it begs the question, how many more times and to what severity? Dementia is terminal and how long is a piece of string when it comes to how long has Bridget got before it really gets worse?
im sorry about Bridget had a fall but glad that there are no injuries. she had plenty of people on hand. just see if you can just deal one thing at a time. it will overwhelm you. its good you are volunteering at the home. its very satisfying and you will get a lot of payback for your efforts as well as seeing Bridget.
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
I’m thinking of all sorts of things today as a result of Bridget falling again.

How fragile things are - yesterday all ok and today all up in the air.

I find that as long as things stay on an even keel, that if from one week to another Bridget remains the same, then I can just about handle it. I can’t do change as I find it scary .

And change for Bridget means the inevitable decline and for me more uncertainty and anxiety. Its enough for me to cope with when things are constant without that dreaded phone call from the home.
It’s a matter of self preservation sometimes because it’s all to big for me to live with. My only comfort at the moment is that at least she wasn’t spread eagle on my carpet while I waited for an ambulance. And now I’m told she’s asleep getting over her earlier trauma.

Another day dementia land strewn with bomb craters
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
I’ve just come across a news item from radio 4’s Woman’s Hour about a book by Chimamanda Ngozi Adichie about the death of her father and mother. Not read it yet but it looks interesting.

She’s speaking on the clip about people’s comments about death and how we’re at a loss about how to talk to others sensitively and with empathy.
Go to Radio 4 woman’s hour on BBC web site

Full of “fed up ness” this morning. Not only am I worrying about Bridget after her fall yesterday but the doctor now tells me that I have an “issue” with one of my kidneys. Booking me in with Urologists later for investigation. I got over prostate cancer, now this! Grrrrrr!
Peterx
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,030
0
High Peak
I’ve just come across a news item from radio 4’s Woman’s Hour about a book by Chimamanda Ngozi Adichie about the death of her father and mother. Not read it yet but it looks interesting.

She’s speaking on the clip about people’s comments about death and how we’re at a loss about how to talk to others sensitively and with empathy.
Go to Radio 4 woman’s hour on BBC web site

Full of “fed up ness” this morning. Not only am I worrying about Bridget after her fall yesterday but the doctor now tells me that I have an “issue” with one of my kidneys. Booking me in with Urologists later for investigation. I got over prostate cancer, now this! Grrrrrr!
Peterx
That does sound interesting. When my other half's brother died from prostate cancer, his wife was bereft. I was quite close to her (she is my astroloical twin, not that I believe in such things...) and went to the funeral. I was struck by how useless I felt - what do you say? Obviously, 'I'm so sorry for your loss,' and maybe, 'How awful! He was such a lovely man.' Then there's the rather desperate sounding, 'If there's anything I can do...'

What do you say after that? What can you possibly say that would help even slightly? All you can do is repeat how sorry you are when you'd dearly like to say something - anything - that would make the person feel better.

Maybe in the end we struggle because of our attitude to death and dying? It is so hard when someone is inconsolable because our instinct is to help, to lessen their sadness, yet we know we can't. And there's also the very real fear of saying the wrong thing and making the person feel worse.

Some months later my almost-sister told me she felt far worse than at the funeral. She said people were avoiding her, wanted her to 'get over it' so they felt easier around her. She was still grieving deeply (and still is more than 2 years on) and was always telling me, 'No one understands!'

Much of this reminds me of you, Peter, though of course yours is a different, anticipatory grief. Many times I have read your posts, heard and felt your pain then felt useless because nothing I say is going to change how you feel! Following your journey I am gradually learning to accept that all we can really do is listen and reassure you that we are here and we care. I am constantly amazed by your strength and devotion and glad that you and Bridget met and enjoyed many wonderful years together.

I hope you have a better day today and that Bridget stays upright...
 

Ton3

Registered User
Dec 2, 2019
66
0
I hope you dont mind me joining in your conversations as the person with dementia in my life is not my wife but my MIL and I just wanted to say how I really do feel for you all and I look at my beautiful wife caring for her Mother and the thought that she would have this awful disease and i would be in the position that you all are or have been scares me to death, I read most of your posts through teary eyes as the love you all describe is the love My wife and I have for each other (we have no children). Watching my MIL deteriorate in front of us has been heartbreaking and a complete nightmare as the downturn was sudden and she went from being an independent woman living on her own with memory losses and the odd strange behaviour to being bedridden, double incontinent and unable to converse properly, gets very angry, can laugh all day over things that are not in the least funny, cant read her books and she was an avid reader, only watches Animal related TV programmes now. So I just wanted to say that because of your words when I see my wife tonight (she moved in with her Mum Sept 2020 and I go each day after work and stay over fri - sunday) Our hug will be that bit tighter our kiss will be that bit longer and sweeter and we will cherish the NOW that we have even if its not the best at the moment but its still US as we have been and are to each other after 41 years together and I will think of you all.
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
Thank you @Jaded'n'faded and @Ton3
Please remember that we have each other for such a short time and we can never make the past better. I have so many regrets. Things I ought to have said/not said and done/not done, but all I can do now is my best towards Bridget.

I logically know that there’s no more I can do to improve Bridget’s life, so what about me? I’m reminded often about looking after me.

I’ll start by volunteering in the home and see how I get on. There’s is still a part of me that feels a strong obligation to visit and see and experience Bridget as much as possible. It’s a bond I can’t lessen as I feel I owe it to her to do this. And I know I have a life that needs to be lived. But even if I know she doesn’t remember my visits and that the staff take great care of her, I would feel I’m neglecting her by opening up my life to other things.

It’s two years nearly she left here and everyday since that August 2019 I’ve mentally been by her side. She fell yesterday so she’s in bed and I sat there this morning on her bed just reassuring her. She even got hold of my face and kissed my lips. Both wonderful and heart wrenching when I have to leave.

I’m not being sensationalist if I truly say that if by freak of nature, some tear in the universe I could take her place in that bed then I would in a heartbeat.
Peterx
 

kindred

Registered User
Apr 8, 2018
2,754
0
Thank you @Jaded'n'faded and @Ton3
Please remember that we have each other for such a short time and we can never make the past better. I have so many regrets. Things I ought to have said/not said and done/not done, but all I can do now is my best towards Bridget.

I logically know that there’s no more I can do to improve Bridget’s life, so what about me? I’m reminded often about looking after me.

I’ll start by volunteering in the home and see how I get on. There’s is still a part of me that feels a strong obligation to visit and see and experience Bridget as much as possible. It’s a bond I can’t lessen as I feel I owe it to her to do this. And I know I have a life that needs to be lived. But even if I know she doesn’t remember my visits and that the staff take great care of her, I would feel I’m neglecting her by opening up my life to other things.

It’s two years nearly she left here and everyday since that August 2019 I’ve mentally been by her side. She fell yesterday so she’s in bed and I sat there this morning on her bed just reassuring her. She even got hold of my face and kissed my lips. Both wonderful and heart wrenching when I have to leave.

I’m not being sensationalist if I truly say that if by freak of nature, some tear in the universe I could take her place in that bed then I would in a heartbeat.
Peterx
Oh Peter, I know, I’m still looking for the parallel universe where Keith didnt get I’ll. Kx
 

update2020

Registered User
Jan 2, 2020
58
0
@Dutchman I heard that on the radio too. Although I have lost many relatives before, I have never felt anything like the grief of slowly losing (but also not losing) my husband to this disease. I wasn't prepared for the physical aspects of it and the complete inability to either move on or explain it to anyone else. So, yes, we are thinking of you and understand. In other news I am continuing to make my new bedroom as uncluttered as possible but have introduced just one wedding photo into a corner to see how I get along with it. I am considering getting a puppy. How is the cat?
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
Oh boy. I’m at the hospital waiting for Bridget to have an X-ray after her fall. Full pelvic. I wish I could take her place, bless her. She’s so agitated and cannot comprehend what’s happening. They’re so busy. Looks like a very long evening. I’m trying to be strong for Bridget. My brother in law went home without offering to keep me company. Bloody waste of space.
 

jennifer1967

Registered User
Mar 15, 2020
6,326
0
Southampton
Oh boy. I’m at the hospital waiting for Bridget to have an X-ray after her fall. Full pelvic. I wish I could take her place, bless her. She’s so agitated and cannot comprehend what’s happening. They’re so busy. Looks like a very long evening. I’m trying to be strong for Bridget. My brother in law went home without offering to keep me company. Bloody waste of space.
bridget has fallen again? she must be so confused with all the people around her. you are strong and i hope that she hasnt damaged anything
 

blackmortimer

Registered User
Jan 2, 2021
288
0
Falls are one of the major problems, I think. Margaret has had three, on;y one of which ended up with her going to A & E and that was only as a precaution - no harm done though there was a slight brain haemorrhage which can't have helped her mental condition. The others were since she has been in the nursing home where they seem to have dealt with them quietly and efficiently. Her problem seems to be judging distances and this can lead to her sitting down on the floor rather than the chair or bed that she intended. Having talked to the staff at length it seems to be something that happens with dementia. So hopefully Bridget will be OK but I understand your worries and will be thinking of you both.

God bless,