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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Well, I’ve got through another night ( had upsetting dreams with Bridget saying she didn’t want me any more) but apart from that ( which disturbs me obviously) I’ve got to get on with the business of facing a visit today and seeing my darling struggling with dementia. When I’m in front of her I’m fine, relaxed and at ease. I ramble on about everything. I kiss her and comb her hair. I say she’s beautiful and she smiles. I say I love you many times hoping she understands.

Hi @blackmortimer. I wish I could be more detached from it all but we’re all different and handle this terrible dementia journey the best we can so we lessen the hurt as much as possible. The problem I have thinking about the good ordinary times is that I wish them back. It just reminds me of all we’ve lost.

So I’ve put away photo albums, put anything with her writing on in a drawer ( she started a book) but the kitchen has numerous containers with her labels. At least I know where the oregano is !

She organised everything and now she can’t hold a fork.

I was sitting in the front room last night and the security light went on and for just a moment I expected and pictured her walking past the window and opening the door.
Peter
 

Pusskins

Registered User
Jun 6, 2020
322
0
New Zealand
Well, I’ve got through another night ( had upsetting dreams with Bridget saying she didn’t want me any more) but apart from that ( which disturbs me obviously) I’ve got to get on with the business of facing a visit today and seeing my darling struggling with dementia. When I’m in front of her I’m fine, relaxed and at ease. I ramble on about everything. I kiss her and comb her hair. I say she’s beautiful and she smiles. I say I love you many times hoping she understands.

Hi @blackmortimer. I wish I could be more detached from it all but we’re all different and handle this terrible dementia journey the best we can so we lessen the hurt as much as possible. The problem I have thinking about the good ordinary times is that I wish them back. It just reminds me of all we’ve lost.

So I’ve put away photo albums, put anything with her writing on in a drawer ( she started a book) but the kitchen has numerous containers with her labels. At least I know where the oregano is !

She organised everything and now she can’t hold a fork.

I was sitting in the front room last night and the security light went on and for just a moment I expected and pictured her walking past the window and opening the door.
Peter
@Dutchman I understand your grief only too well. I'm not always as strong as I try to make out. Today has been the pits, lots of crying and wishing like anything I could go back 20 years and start again knowing what I know now. Of course, it's not going to happen and things can only get worse. Oh for a cure for this evil disease.
 

update2020

Registered User
Jan 2, 2020
58
0
Do you know, I have never been able to cry. I've had sleepless nights, become obsessed with it all to the exclusion of everything else and had panic attacks and other physical reactions, but I have never really cried. Sometimes I have come close when talking to other people about it, but alone during lockdown that doesn't happen of course. We are all different. Odd.
 

blackmortimer

Registered User
Jan 2, 2021
289
0
Yes, @update2020 , we are all different even though what we experience is so very much the same - sometimes uncannily so. I tend to tears fairly readily but there's always an inner voice speaking to me from a long gone generation telling me to pull myself together and be a man!! Thank goodness we live in a different world now.
Speaking of which one of those scary coincidences happened to me today.

I was watching some YouTube items ,mainly of current affairs it being Sunday, when the algorithm suddenly threw up amongst the usual random things a recording from 1972 of Peter Skellern singing "You're a Lady" complete with original brass band accompaniment. It had a particular poignancy for me because it was the first "our song" Margaret and I had - she was a devotee of Peter Skellern and I came from a brass band family so it was a musical match made in heaven.

Needless to say I've spent a good deal of today in tears but I've noticed when I pull myself together that the tears are more of happiness at the remembrance of those far off days when we were still reasonably young and deeply in love rather than grief over the present. I know that even if she heard the song now Margaret probably wouldn't recognise it, but I would lay odds that somewhere inside her it's still there and when I hear it we can be together again.

God bless all
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Just come across a recording on my phone of Bridget talking to our son. This was two months before she left here for the home. Even then she could ask and answer questions, understand and made a little joke.

it’s all I have of her speaking quite normally. Now it’s just utterances and the occasional right word. When she understands now and responds I cling on to every moment.

And all of this reminds me of what I once had. It reminds me of my wife who once chatted for England, argued, hogged conversations ( I want all this back). How we take all this for granted until it’s lost forever.

I hurt when I remind myself and remember but I’m an addict to it.
Peterx
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
To be honest I’m becoming numb to it all. I think what’s the point anymore with wanting things to be different when they never can be. I cry but that upsets me. So I try not to cry and instead try to cram distractions into my day until I see Bridget again.

It’s not that the emotions aren’t there anymore, it’s just that I don’t want them to surface. I’m so tired of the endless treadmill of one bit of sadness after another.

On a more positive note the volunteering at the home has done me good because I’m more involved and treated as a friend. It’s good because its more informal and I realise the staff need all the respect I can give. I help anytime they want when I go and for anything they want me to do. I recommend it - it helps.

peterx
 

Andy54

Registered User
Sep 24, 2020
63
0
I think my ambition is to be able to put the negative emotions into a metaphorical box, put the lid on and only open it on the occasions that I want to revisit those feelings, not sure if I'll ever achieve that.
D has now started appearing in pictures posted on the homes Facebook page and I'm finding I get more pleasure, reassurance and satisfaction from seeing these glimpses into her everyday life at the home than I do from visits which usually consist of me desperately trying (usually unsucessfully) to keep her engaged during the time that I am there. Not sure how to feel about that.
 

HannahR

New member
Jun 22, 2021
5
0
Hi there @update2020 I’ve taken your lead and cleared out some of my wife’s clothes from the small bedroom I’m in and into the main bedroom. Nothing much, just some scarves and tops. Well, I got into it for about 10 mins and had to stop as I was in tears as every item reminded me of her. One of her scarves had her smell left. Loads of emotions of loss and longing and her never coming into this room and never wearing these again.

I’m mindful that I don’t want to create a shrine
to Bridget but I can’t get rid of anything. Everything is kept the same simply because I’ve no need to enter the room. To get rid of her stuff is like getting rid of her.

peter
Hi Peter,

This is something I can relate to at the moment. My Mum recently moved into a care home with early onset of Alzheimer's and my family wanted to get rid/sell her clothing. However, they did inform me first because they knew I would surely take some of their hands. That's what I did, I'd rather cherish them and wear them knowing that she wore them. I keep her night T-shirt close to comfort me while I sleep.
Have to say taking the clothes away from her room was very weird and upsetting. So I completely understand and want to tell you, your not alone.

Hannah
 

update2020

Registered User
Jan 2, 2020
58
0
To be honest I’m becoming numb to it all. I think what’s the point anymore with wanting things to be different when they never can be. I cry but that upsets me. So I try not to cry and instead try to cram distractions into my day until I see Bridget again.

It’s not that the emotions aren’t there anymore, it’s just that I don’t want them to surface. I’m so tired of the endless treadmill of one bit of sadness after another.

On a more positive note the volunteering at the home has done me good because I’m more involved and treated as a friend. It’s good because its more informal and I realise the staff need all the respect I can give. I help anytime they want when I go and for anything they want me to do. I recommend it - it helps.

peterx
@Dutchman i have noticed that recently you have said you are ‘addicted’ to feeling sad and it is wearing you out. This rang a bell because it is when I finally said out loud that I felt ‘addicted’ to worrying and grieving that I began to really work (and I mean work) at distracting myself. It was exhausting (genuinely) but one year later it has made a difference and some of the things I did as distractions have become part of a new way of life and reduced my ‘addiction’ to grief.
My distractions - using a step counter and walking 10k steps a day, never sitting in silence (always have the radio or audio books on, even at bedtime). Forcing myself to talk to at least one person a day. Going once a week to a club that has nothing to do with dementia. reorganising the house a little and making the spaces I use most often - especially the bedroom - just mine (that bit came last). Getting rid of the various aids I had used specifically for dementia. Deleting all my earlier posts. I know you post on here for comfort and what worked a bit for me might not work for you. But I just thought I’d share.
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Hi there @update2020 . Good to hear from you. Oh the joy of distraction
- it would be good for me if, like you, I could incorporate these into my life instead of using them just to stop worrying about Bridget and myself.

I’m going to have a taster session tomorrow on our local river Dart in a kayak. I’m going to be capsized and learn how to get out!!! I may have been over ambitious! Anyway I think if I like it then it’s a nice way of being peaceful on the river, a better way of thinking of Bridget than being stuck indoors.
All the best

peter
 

jennifer1967

Registered User
Mar 15, 2020
6,328
0
Southampton
Hi there @update2020 . Good to hear from you. Oh the joy of distraction
- it would be good for me if, like you, I could incorporate these into my life instead of using them just to stop worrying about Bridget and myself.

I’m going to have a taster session tomorrow on our local river Dart in a kayak. I’m going to be capsized and learn how to get out!!! I may have been over ambitious! Anyway I think if I like it then it’s a nice way of being peaceful on the river, a better way of thinking of Bridget than being stuck indoors.
All the best

peter
i hope you enjoy it, get some peace and the weather is good
 

update2020

Registered User
Jan 2, 2020
58
0
Super strategy update2020 and an excellent attitude
Thank you, Sylvia. I got my new bedroom furniture just a couple of weeks ago. We had only ever had hand-me-downs from our parents before and it had so much History buried in it. *Lovely* feeling to be free of all that (it is still in the spare room, I'm lucky to have two). And @Dutchman the kayaking sounds great. Oddly another (fully widowed) friend told me about that just recently and I intend to try it with her one day - but maybe not the capsizing part.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,030
0
High Peak
Hi there @update2020 . Good to hear from you. Oh the joy of distraction
- it would be good for me if, like you, I could incorporate these into my life instead of using them just to stop worrying about Bridget and myself.

I’m going to have a taster session tomorrow on our local river Dart in a kayak. I’m going to be capsized and learn how to get out!!! I may have been over ambitious! Anyway I think if I like it then it’s a nice way of being peaceful on the river, a better way of thinking of Bridget than being stuck indoors.
All the best

peter
Crikey! That would scare me to death! I do like the idea of calmly floating down the river but maybe I'd be better with a punt... perhaps with a glass of fizz and a handsome somebody poling... :D

Good luck - hope you can swim! The river Dart is beautiful...
 

Jan L

Registered User
Mar 26, 2020
94
0
Hi there @update2020 . Good to hear from you. Oh the joy of distraction
- it would be good for me if, like you, I could incorporate these into my life instead of using them just to stop worrying about Bridget and myself.

I’m going to have a taster session tomorrow on our local river Dart in a kayak. I’m going to be capsized and learn how to get out!!! I may have been over ambitious! Anyway I think if I like it then it’s a nice way of being peaceful on the river, a better way of thinking of Bridget than being stuck indoors.
All the best

peter
That's a wonderful idea, so positive and very beneficial to your health and well being. Good luck being capsized.
 

Jan L

Registered User
Mar 26, 2020
94
0
Thank you, Sylvia. I got my new bedroom furniture just a couple of weeks ago. We had only ever had hand-me-downs from our parents before and it had so much History buried in it. *Lovely* feeling to be free of all that (it is still in the spare room, I'm lucky to have two). And @Dutchman the kayaking sounds great. Oddly another (fully widowed) friend told me about that just recently and I intend to try it with her one day - but maybe not the capsizing part.
I think the capsizing bit is part of the essential training of kayaking before you do much else because you are probably more likely to capsize when you start the sport than when you are fully used to it. I don't like the sound of it at all, I did do a it of rowing in my youth, but in those days they didn't like ladies at the Rowing Club.
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Don’t get me wrong, I’m apprehensive about the capsizing but I want to get experience on the water and try all sorts of kayaks. It just seems a way of getting away from it all on a peaceful river and being at one with my thoughts with Bridget. There’s too many
sad ( and happy) distractions here at home and I find myself sitting here on the sofa just thinking and feeling wretched.

The volunteering has helped as I get involved with the home and speak more to the staff who deserve praise and medals for their care. I recommend it to anyone who’s thinking about giving it a try.

love to you all, peterxx
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
I’ll tell you one thing in confidence that I feel right now and makes me feel uncomfortable.

I visit Bridget regularly, I love her to bits, I’d care for her till my dying day if I could and give everything we have to have her back with me if God could arrange a miracle or two.

But having lived more or less on my own now for 3 years ( one year at home full on dementia behaviour) I’ve forgotten what our normal life was like. You take that life for granted as part and parcel of day to day living. Bridget is becoming someone I used to know, a life I used to have. And unless you end it all by taking your own life you have no choice but to somehow get on with it, adapt somehow, even attempting a decent dinner for one.

Peterxx
 

Andy54

Registered User
Sep 24, 2020
63
0
I’ll tell you one thing in confidence that I feel right now and makes me feel uncomfortable.

I visit Bridget regularly, I love her to bits, I’d care for her till my dying day if I could and give everything we have to have her back with me if God could arrange a miracle or two.

But having lived more or less on my own now for 3 years ( one year at home full on dementia behaviour) I’ve forgotten what our normal life was like. You take that life for granted as part and parcel of day to day living. Bridget is becoming someone I used to know, a life I used to have. And unless you end it all by taking your own life you have no choice but to somehow get on with it, adapt somehow, even attempting a decent dinner for one.

Peterxx
@Dutchman . I know what you mean about forgetting what "normal" life was like. I'm finding at the moment the strongest memories are the dementia years and our earliest years together (D was 16 when we first met !). The decade before dementia took hold seems to have faded into a blur, not so much where we were or what we did, more the memory of how we shared and felt about things together.
Andy.