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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi everyone who’s answered my call for advice on volunteering. Still waiting for the home to get back to me with some details.

Another matter is worrying me, and as you all know, worry festers and can take over your day. Bridget was punched by another resident ( not the first time by this woman) on the back on Wednesday but it seems Bridget wasn’t hurt and carried on walking. The home are putting measures in place to avoid this happening again. Then yesterday I’m told Bridget fell ( or I’m told slid to the floor) but she’s ok and is walking about as usual.

So my concern is, was the fall a result of the punch and is the fall another mini stroke? Perhaps we’ll never know. I’ll talk to the home but probably there’s little I or they can do apart from monitor her behaviour.

one bloody thing after another!

peter
 

Old Flopsy

Registered User
Sep 12, 2019
265
0
Hi @Dutchman. Yes it is a worry when we can't be there to prevent things happening. I dread the phone ringing- I always worry that it is going to be bad news- a fall, etc. My OH has had a number of falls- but when I mention it to him he has no memory of such events! So be content that Bridget is probably not worrying, even though you are. My thoughts are with you.
 

blackmortimer

Registered User
Jan 2, 2021
280
0
I've been mulling over your quandary about whether to volunteer or not, @Dutchman. It wouldn't suit me at all because I would be constantly worrying about Margaret to the exclusion of anyone else and would feel disloyal doing anything for anyone else. But that's me and my possibly skewed psychology. I think from your posts that possibly it might help you, although from your latest (about the punch to the back) it could be a source of worry - knowing more than is helpful psychologically. If I were you. I'd talk it through with the home and give it a trial period before committing to anything long term. Like so many things in life it can be easy to get into something involving commitment but difficult to get out of it! Bottom line - proceed bur with caution?

God bless
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,018
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High Peak
My mum also started having falls. And she was pushed by another resident, went down on her bum and broke her hip. She recovered well and walked with a frame after that but still managed to fall sometimes, usually when transferring from bed to chair, r getting out of bed, etc.

Whilst TIAs can be a cause, it can just be progression of the dementia. Sometimes mum would fall simply because she could no longer remember the process of - say - sitting down. It sounds odd as it's something most of us do automatically but getting mum from standing with her frame to sitting in her chair was a major undertaking! So it would be, 'Move a bit closer to the chair, now turn round, no - the other way! No, don't sit yet! Step backwards a little till you can feel the chair against the back of your legs. Yes, don't worry - the chair is there but you need to turn round the other way!' etc, etc.

So falls happen and are extremely hard to prevent, even when a carer is assisting. Sometimes it's as though the person's legs just 'go' from under them and they drop like a dead weight. Low blood pressure can make people dizzy when they stand up too....

The important thing is that Bridget is fine...
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I was driving today to my daughter. Driving is one of the times I miss Bridget the most as we kept each other company with silly singing, talk and her just being there next to me. And driving represents going on holiday with our little caravan really excited to be going away, just us, just simple stuff.

I was thinking that all the films, music, reading, you know, all the distractions, that move us away from the longing and loneliness, don’t really cut it. What I’d like is a way of being with the awful feelings but being able to handle it better so I don’t feel so miserable. That’s my holy grail

peter
 

kindred

Registered User
Apr 8, 2018
2,750
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I was driving today to my daughter. Driving is one of the times I miss Bridget the most as we kept each other company with silly singing, talk and her just being there next to me. And driving represents going on holiday with our little caravan really excited to be going away, just us, just simple stuff.

I was thinking that all the films, music, reading, you know, all the distractions, that move us away from the longing and loneliness, don’t really cut it. What I’d like is a way of being with the awful feelings but being able to handle it better so I don’t feel so miserable. That’s my holy grail

peter
Peter, I am absolutely respect that holy grail. I get the overwhelming feelings and try to sit tight, I tell myself that grief is normal. That it is normal and I can still function. That more or less worked and works for me. Love kindredx
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi @kindred. Thanks for the advice. I suppose it’s the actual physical presence that we miss, flesh and blood. Nothing quite like it.

I was in her room last Wednesday and Bridget was lying there while I sat looking at her and I thought, here is a woman who’s body was mine to care for and now she belongs to the home. It’s so hard to describe the loss of that intimacy when I place my hand on her and know she doesn’t feel any of that old closeness.
 

kindred

Registered User
Apr 8, 2018
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Hi @kindred. Thanks for the advice. I suppose it’s the actual physical presence that we miss, flesh and blood. Nothing quite like it.

I was in her room last Wednesday and Bridget was lying there while I sat looking at her and I thought, here is a woman who’s body was mine to care for and now she belongs to the home. It’s so hard to describe the loss of that intimacy when I place my hand on her and know she doesn’t feel any of that old closeness.
Peter, the depth of your love is a miracle. This whole harrowing situation is demanding so much of you. Kx
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I was at the home today, inside her room and sitting next to her on her bed. I was thinking what is worse - being on my own lonely and longing for her or having her back here now with her dementia. Silly isn’t it that I so long for her companionship even though she’s a shell of what she was. And it wouldn’t work, I know that

I suppose it’s because my darling represents all my life for the past 31 years and in her, locked away, are my best years.

I’m my darkest moments I imagine her dead and unreachable. How could I possibly have another relationship? It would have to be a person who equally understood the pitfalls of starting afresh. These things worry me as I see my future spread out empty.
 

Andy54

Registered User
Sep 24, 2020
61
0
I share that feeling about the empty future.
I think perhaps that I have been so bound up in taking care of D's needs for the last couple of years that I haven't had time to really miss the person she was before dementia took hold. Now that she has been in care for a few weeks there is so much empty time that I spend more and more time contemplating what has been lost and what might have been.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi @Andy54. There’s so much I could say about these first few weeks and months after your love one has left home.

If it’s any help I posted numerous times on here when my wife went into care August 2019 and I urge you to look at my posts then to see how I tried to cope. It’s just a suggestion to show a fellow feeling of those times. it’s all under thread “Dementia journey”. We’re all different but I can really identify with what you’re going through.

Having said that I still feel it’s only yesterday she left here and if, by some miracle, she could return here and be normal I’d have her back in a heartbeat.
Keep posting and I’ll try to support you.
Best wishes. Peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
hello everyone. How are we.?

Today my daughter and family descend on me for a few days so I’ve had to run the hoover round, clean loos, generally tidy up.

I’ve had to also make up a bedroom untouched for nearly two years for the grown ups and it’s wiped me out mentally and physically. This bedroom is the main one ( I moved into another while she was here), the one Bridget and I shared with all the associated memories, of which I only mainly remember the dementia behaviour of pleading with her to get washed, cutting her own hair, going to bed in all her clothes including shoes.

But sitting on the side of the bed looking out of the window the emptiness and loneliness has hit me and it’s hard, so hard. We have these house spaces where we’ve lived together, each bit occupied by body, noise, smells, doing stuff, being quiet together and now what’s the use of all space?

I’ve not touched any of Bridget belongings since August 2019 and can’t see me ever doing anything about them. So many clothes, pots of cream, jewellery, books. I hardly go in the bedroom and when I do I can’t stay long. Perhaps stuff will go when I die or have to leave ( dementia for me, who knows!).

Posting on here is like meeting up for coffee.

god Bless

peter
 

blackmortimer

Registered User
Jan 2, 2021
280
0
It's a beautiful sunny warm day here, but I feel cold for some reason. I spoke to Margaret on the phone the other day. The good news what that she was prepared to speak; the bad news was that she didn't make much sense. I think she knew who I was although I'm not absolutely certain. The conversation on her part seemed to consist of fragments from conversations we might have had pre-dementia, each individually making sense but strung together not really. Rather like echos from a far distant land. So I was left deflated. This is my problem - I hope for miracles and am disappointed and then feel even worse than before. One of Margaret's favourite quotes was "Mankind cannot stand too much reality" - T.S.Eliot I think - and that's me all over, sitting here in the sunshine grieving over the loss that I know can never be made good but still desperately hoping that it might. At such times I'm afraid reality's not for me; I'd rather retreat into the world of make believe and remember the good times when, so to speak, the sun always shone and it only rained at night - as Camelot was depicted in the musical. But then, as I've said more than once, anything to see me through the day.

All of which, Peter, is a very long-winded way of saying I know exactly what you're going through - the empty bedroom, the clothes, the toiletries, the books, the clothes. It's exactly the same here and, although it's a cliche, I feel your pain acutely. At least you're not alone.

God bless
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi @blackmortimer. I have my daughter Rebecca and family with me today and me and her are going to see her mum later this morning. At least I’ll have company and Rebecca is willing to listen to my outpouring of sadness.

It seems the more I visit the more it drums into me that Bridget‘s in a far away land and I’m, like you, always hoping for a degree of normality that I can hold on to, that will be my Bridget of old when we were a couple just being just a couple. I fear that as time goes on my relationship to it all will become more distant ( how can it not) and I’ll get more used to this life on my own.

It’s been suggested in various places that this all prepares us for the final event of our love one dying. Looking at it that way one would assume that the long separation, the lack of recognition of you, no meaningful conversation and no shared memories and the enforced loneliness all prepare us for what’s to come. I’m not sure.

There is a distinct difference I feel in the person still around and touchable and the time when all possibilities are over. But, I suppose, there is a difference in this slow decline and sudden death. At least there is some “ getting used to it”. I don’t know, I’m not sure, and that uncertainty is a worry.

God bless, Peter
 

blackmortimer

Registered User
Jan 2, 2021
280
0
Hello @Dutchman . I hope you find your daughter's visit helpful. As it happened my son visited yesterday with his dog so we went to the local park for a walk in the sun. As I had been feeling a bit low it was good to have someone to talk it through with. I sometimes think that being alone is a recipe for dwelling on things but what can you do when the thoughts come and won't go away? Like you I have wondered if death of a loved one is like this and like you I'm not sure. There's a finality about death that's different from separation whilst living. I try not to think about it too much because I tell myself there's no point in tormenting myself with another level of sadness - the current situation's as much as I can cope with. Anyway, enjoy the sun if you can!

God bless
 

update2020

Registered User
Jan 2, 2020
54
0
I cleared out some of my husband's stuff after he had been in care around a year - it was very hard - but I just told myself that I would buy him new, and how nice that would be, if he ever needed it again. I too use our old room that we once shared as a guest room and it makes a little more space for them and their things if/when they come (not so often during covid of course). I've made my room (the one I moved into when I couldn't share with him any more) 'brand' new - very calm, uncluttered and simple - nothing to remind me of past times. I find it helps me get to sleep a bit and in particular wake up to a new day if I don't wake up to past memories all around me.
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
I cleared out some of my husband's stuff after he had been in care around a year - it was very hard - but I just told myself that I would buy him new, and how nice that would be, if he ever needed it again. I too use our old room that we once shared as a guest room and it makes a little more space for them and their things if/when they come (not so often during covid of course). I've made my room (the one I moved into when I couldn't share with him any more) 'brand' new - very calm, uncluttered and simple - nothing to remind me of past times. I find it helps me get to sleep a bit and in particular wake up to a new day if I don't wake up to past memories all around me.
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
 

Andy54

Registered User
Sep 24, 2020
61
0
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