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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Thanks @blackmortimer. I’ve kept busy this morning tidying and hoovering. The place was becoming a bit of a one man tip.

You quickly realise when you’re on your own that there really is no one else to do chores. That’s what hit me early on, that no one else moves stuff. And your world shrinks to just essentials because I don’t need to use other spaces in the house. I realise now that I was somewhat oblivious to Bridget organising and rearranging. It even got on my nerves sometimes, but oh my goodness, to have all that back now!
Writing from my clean and tidy front room
peterx
 

Dutchman

Registered User
May 26, 2017
1,452
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73
Devon, Totnes
I’m finding that I’ve started to feel a bit of anger towards Bridget. It’s one of the anticipated stages of grief but not one I thought I’d experience.

. I’ve asked about the causes of dementia but no one can give me a definite answer because there isn’t one. However, I don’t think it helped that Bridget didn’t really - how can I put this? - lead a healthy life style. And I feel this may have contributed to her experiencing the TIA’s.

I know I can never pin this down to any cause but this loneliness and grief is making me to want to find something to blame.
I can never resolve this as Bridget can’t respond, can’t be sympathetic to my feelings.

But when I’m sitting there in front of her saying I love you so much I also say that “ I miss you so much and why did you have to go and get dementia and now I have to live on my own”. It’s difficult keeping the tears back and I try to smile despite the hurt I feel.
Peterx
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,023
0
High Peak
No one is to blame for dementia, Peter. We still know so little about the causes. There are many here on TP who had extremely healthy-living loved ones.... but they still got dementia. The same goes for all the suggested 'possibly contibuting factors' - it's easy to find exceptions that would seem to disprove the theories. And of course, some people seem genetically pre-disposed to getting dementia in the same way some people seem genetically pre-disposed to getting cancer or other diseases.

You love Bridget in every way, even if she lived a less than healthy lifestyle - please don't blame her for that or for having dementia.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Oh @Jaded'n'faded. You put me to shame and I ask the Forums forgiveness.

Of course I shouldn’t blame Bridget and when I do I know in my heart it’s wrong . It’s just me trying to find a way out of all of this and dementia screws with my mind and I find I’m unreasonable and inconsiderate. These feelings are brought to the surface by grief, not that that’s an excuse.
 

blackmortimer

Registered User
Jan 2, 2021
285
0
I agree with @Jaded'n'faded. Indulging in blame is both pointless and unkind. Margaret lived what I would call a reasonably healthy lifestyle both in terms of diet and exercise, neither of her parents suffered any form of dementia but she still fell prey to Lewy bodies. At one time, many years ago I used to smoke heavily but have exceeded my then life expectation by a few years and without (so far) suffering any of the diseases commonly ascribed to having smoked. As far as I can see we are all unique individuals, what happens to us, happens; maybe it's written in our genes, maybe not. To quote the current usage "stuff happens". We're all in the same boat so let's be kind to each other and stop with the blame!

God bless,
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,023
0
High Peak
Oh @Jaded'n'faded. You put me to shame and I ask the Forums forgiveness.

Of course I shouldn’t blame Bridget and when I do I know in my heart it’s wrong . It’s just me trying to find a way out of all of this and dementia screws with my mind and I find I’m unreasonable and inconsiderate. These feelings are brought to the surface by grief, not that that’s an excuse.
Oh don't feel like that, Peter! As you correctly recognise, your anger is just a part of your grief. It seems more natural to be angry with a person rather than an inanimate thing, i.e. dementia.

I think everyone here is angry with dementia - and how frustrating and pointless that is! Dementia doesn't know, dementia doesn't care. It's much like being angry with the weather.

Sorry - I'm not being very constructive here. But don't be angry with yourself or with Bridget. It's not any person's fault, it's just a thing.
 

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
@Dutchman Last time I dropped in, you were volunteering at Bridget's rest home. Are you still doing this and how do you feel about it? I had considered doing likewise, but today I felt so depressed being amongst aged and ill people that I felt that I might not be able to do it after all.
 

Dutchman

Registered User
May 26, 2017
1,452
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73
Devon, Totnes
Hello @Pusskins . I’m still volunteering although what I do mainly is help Bridget with her eating which frees up a member of staff. I’m always on hand to whatever jobs they need doing. It’s good because t gets me to know the staff better, they get used to me and it’s an easier relationship all round.
I’m about to go now and I’m always feeling nervous and a butterfly stomach. I get tears when I see her and mumbling words of regret to her but I know it can’t be any other way. I wouldn’t last a day if she was here at home

Bless you. Peter
 

Dutchman

Registered User
May 26, 2017
1,452
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73
Devon, Totnes
Just got back from a visit feeding Bridget

@Pusskins. I was very nervous to begin with and I struggled. As I’m accepted as a volunteer now they’ve ask me to come in tomorrow as they’re short staffed to assist with Bridget at meal time.

I think it’s good for me because it tends to lessen the extremes of just going to see her because given something to do knowing it helps the home makes me feel good. I’ll clutch at anything that doesn’t that!

Perhaps do a little at a time just thinking it’s helping out.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hello everyone. Just need to talk to you. No need to reply unless you want to.

I went to see Bridget today which is two days in a row as they are short staffed and I wanted to help out.

All ok when I was feeding her, we went for a little walk and then I sat down with her, just the two of us in the sun room. It was then that she lent over and wanted to kiss me and I felt such tenderness for her. But then she got restless, her face changed and I thought she was going to cry and I asked her if she was happy here and she said “yes”, but then she looked frightened and said “worse”.
I’m now thinking she means she knows it’s going to get worse so I start to cry as well and I look into her eyes and I feel such fear for her and there’s nothing I can do but hold her hand and try to smile. If I thought she was frightened and unhappy I think I would lose it altogether.

I just feel I need to fold her into my arms and protect and comfort her. But she doesn’t want cuddles and I leave the home and cry all the way home. I’m not sure if these visits are doing me any favours. I need to go but open myself up to heartache when I do. I really can’t win can I?

peter
 
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Dutchman

Registered User
May 26, 2017
1,452
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73
Devon, Totnes
I’ve been thinking about this a lot lately. Many have said that you have a life to lead Peter, you shouldn’t spend time wasting ( actually said) time on someone who can’t respond.

So my feelings are genuinely that if by some miracle they said Peter, we want to take your life and give it to Bridget and this would restore her to full health, if they asked me now I would say yes without hesitation. She would grieve ( of course), but longer term she would handle this better, have her family and their loving support. I would even swap the dementia and have me in the home instead of her.
I know this is nonsense thinking but it focuses my mind on what is actually the only thing that matters - love conquers all.
Peter
 

Andy54

Registered User
Sep 24, 2020
62
0
@Dutchman , I don't think you should read too much into one word or the rapid changes in demeanour, "worse " could have meant almost anything. When I visit Deb I get these sort of changes, one minute she seems to be smiling affectionately at me, next minute getting restless and wanting to wander off somewhere or suddenly becoming upset and tearful. It 's quite impossible to work out the reasons behind the changes. Her verbal communication is almost impossible to decipher but occasionally there will be a clear word, sometimes it seems quite random, other times it is clear she is using a particular word to substitute for words she cannot find. if only there was a Google translator for dementia speak! I'm having an enforced break from visiting now, one of the residents has tested positive for Covid so all visiting is cancelled for at least the next 2 weeks, hoping that a break in visiting won't have too detrimental an effect. As to wasting your time (can 't believe someone actually said that) yes we have our own lives to lead but not at the cost of casting aside our loved ones. The way I look at it their problems are part of our lives and we just have to work around that.
Best wishes, Andy.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,023
0
High Peak
I agree it could mean anything or more likely, nothing at all. If she'd said 'rabbit' you may have been puzzled but would have just thought, 'dementia talking'. But this is also dementia talking.

I'm afraid I don't think it's helpful to dwell on the idea of you swapping places or any other impossible scenarios. Please try to look at what you have got rather than what you can't have.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hello @Andy54 and @Jaded'n'faded. As always the voices of reason and being sensible.

All I can say is this works when I’m in a good reasonable and sensible mood, but put me in front of Bridget when her face creases up with a look of anxiety and frustration, and I lose it completely. I just don’t want her to be unhappy in any way but that isn’t reasonable is it?

I’m taking a day off today and more or less doing very little. It’s hot weather so I’m taking it easy.

I want to take this opportunity to give my loving thanks to all my Forum friends and everyone who is following me on this journey. Without you all I believe I would’ve gone under by now. Such good and practical advice from the heart. Although I don’t often help others
( I’m well aware of my fault here) I continue to think of each and everyone’s unique circumstances each day @blackmortimer @Jaded'n'faded @Andy54 @Pusskins @Grannie G @kindred @big l @kindred @Stacey sue @Old Flopsy and others that I might have missed ( sorry).

❤️peter
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Here I confess my feelings wholesome or not so good knowing ( hoping) that I’ll be understood.

I crave love and affection as a normal desire. Bridget and me had a loving relationship and were so easy with each other. I miss that terribly, and what’s left of Bridget’s affectionate response to me I hang onto bravely, even though any of her affection is probably for a nice person rather than for her long forgotten husband. I take what I can get.

So when one of my women acquaintances shows an interest in me, shows me kindness and consideration, then I remember what that was like to have any affection and that’s my longing, to be loved wholeheartedly again and realistically I know it’s unlikely. Figures show that any new relationships in our circumstances are fraught with problems. And, anyway, no one could replace Bridget and the love she had for me.

I know this is shallow but I’ve been almost 6 years now without Bridget’s complete love and I really don’t remember what it was like to have her around, the two of us just living a normal life. I do sometimes imagine another person being here if only to imagine what it was like before she left.

There, you have my thoughts this morning
Peterx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,365
0
Kent
Hello @Dutchman

I expect we all miss the deep physical and emotional sharing of a long term relationship. These relationships are usually built up over the years as we learn to grow with each other.

However much we crave what we have lost I believe there`s a one in a million chance of the same the second time around and because of this, I have learnt to accept my lot and be grateful for the relationship I had.

I`m not disputing the many successful second relationships but I do believe the older we get the more difficult it would be to make the adjustments necessary to sharing our lives with someone else.

My husband has left a hole in my heart. I`m not looking for anyone to fill it and the hole he has left is his legacy to me.

I`m not unhappy. I still have so much to be thankful for and that is what I`m working on.

I know this is about me and not you but I would just like to show it can be done if we understand this is a natural fact of life. Few couples fade together and our final role is to be the strong supporting the weak.
 

blackmortimer

Registered User
Jan 2, 2021
285
0
I agree with you entirely, @Grannie G. I don't want anyone else because Margaret is always there, deep inside me.
Even contemplating another relationship would be some kind of treason, quite unthinkable. I know that I can't have Margaret back and day by day I'm getting used to it. I hope that if she does die before me (and it seems more likely given her recent deterioration) I shall be able to cope better because I have worked on facing the thought and of actively cataloguing in my head all the memories of happy times and I find I can actually enjoy them. I can go into a world where Margaret is still there as she was and I can have imaginary conversations with her and imagine what she would have to say. So many memories! For instance, the present hot weather has reminded me vividly of the summer of 1976 when we went down to South Wales around St David's and spent what I recall as an idyllic couple of weeks in Mediterranean style sunshine and lazy days. As the song goes "the memory of all this - they can't take that away from me". But then, I say to myself, don't fool yourself - death is always a shock. But as I can't do anything about it I've decided to not dwell on it but instead to indulge in summer memories.

God bless you all
 

Old Flopsy

Registered User
Sep 12, 2019
267
0
The previous few posts were comforting to read.

You all are the ones who understand how torn we feel.

Thankyou.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hello all my friends here. What a wonderful comfort to know that there are, at least, some who really understand the emotions we experience.

Im sitting in the care home car park after seeing Bridget. When I arrived she’s sitting in the lounge and the moment she saw me she said out loud “I love you” and for many this would have been wonderful. But for me it tugs at my heartstrings ( to be loved by my Bridget is everything) and I grit my teeth and I’m wondering if she knows this emotion still and if I’m becoming more a new person in her life and she’s developing fresh feelings. I guess I’ll never really know.

I suppose the more I visit the more she gets used to me and I’m kind and loving and tender and maybe that gets through. I pray she doesn’t miss me when I leave and have to believe that dementia sufferers don’t retain any short term memories.

I have to go home now but I want to stay with her forever to be loved and to love her.
Peter
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
I’m sitting here ( it’s 10.30pm) and I’m wondering if I should visit Bridget again tomorrow as I had such I warm reception from her today. I’ve really nothing else to do tomorrow and what’s 2 hours out of my day? But I don’t want her to get used to me visiting this often as she could build an expectation or do dementia sufferers really don’t remember one day to the next?

And I enjoy helping her feed but miss her when I leave. Damn, damn, damn. It can never be right can it! It’s not like she’s completely out of it ( that could be easier), so when she’s retaining some degree of recognition it makes life more complicated.
Why can’t life be simpler?
 

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