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Dementia’s journey

blackmortimer

Registered User
Jan 2, 2021
289
0
I agree, @update2020 that we do need to find a more appropriate term than "loss". It's a rather materialistic way of looking at a person. Think of "profit and loss". And we say "sorry for your loss" as an almost meaningless cliche when we meet someone who has been recently bereaved. I lost Margaret in a material sense when dementia set in at lest 6 years before she died, possible more. But I've never lost "Margaret" either then or now as we wait for the funeral, because her essence or spirit or soul, call it what you will, is still with me and always will be every time I look at her photograph or read a piece of her writing or sort out her things. I found a photograph yesterday, whilst sorting out, that was taken in I think around 1999 when we visited Florence. We went to the Uffizi gallery and the photograph was taken by a random stranger whom Margaret engaged in conversation and shows her in a black polo neck jumper and stylish black jacket wearing designer sun glasses for all the world like some kind of "nouvelle vague" film actress. That was the presona she'd decided to adopt for this particular visit and sums up for me exactly how she was and how as long as I live, or at least that memory lives in me, she is still with me. So she's not lost. Whatever imprint she made on the world is not lost and I'm sure the same applies to your husband,@update2020 and to Bridget, @Dutchman . We can't assess a person's value in what they did, but in what they were and how they affected others. Perhaps no life is "cut short"; Perhaps they're just as long as they're supposed to be. I don't think Margaret was sent to "do" anything, just to "be". God bless.
 

Dutchman

Registered User
May 26, 2017
1,515
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73
Devon, Totnes
As always I’m not expecting any comments, just need to say what I’m feeling today.

When I look back ( deadly I know) at our lives (pre dementia ) I regret all the time I wasted on unimportant subjects that were my own when i ought to have shown more consideration for being with her. The days caught up in my own desires, hours wasted just thinking of myself and now I realise those precious moments could have been filled with more love and togetherness.

I know it’s not probably healthy ( certainly not realistic) that we think back and wish but, for me it’s natural that I have these regrets for all the missed opportunities. I suppose the message is that we need to love each other more and think of ourselves less. Not by me neglecting my needs but being more tuned into what Bridget wanted and even anticipating what what would make her happy.
Anyway, I’m off soon to get paint ( another project to divert my emotions).
Peter❤️
 

Violet Jane

Registered User
Aug 23, 2021
393
0
I'm sure that a lot of people have those regrets, Peter, and that's not just when someone has a loved one who develops dementia. I think that you have to hold on to all the good times and happiness that you had together rather than dwell on those regrets and minutely analyse when you might have behaved differently. We all behave thoughtlessly and selfishly at times because we are human. And, if I may, I think that it's important to remember that other people suffer great losses too. My neighbour has just died leaving three primary aged children, and I know of quite a number of other people who did not expect that their happy married lives would be cut short by the death of their spouses when they were only in their 30s and 40s, leaving young children some of whom have little or no recollection of their dead parent.
 

Andy54

Registered User
Sep 24, 2020
85
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@Dutchman, I don't think that you should regret time spent on your own interests in the past, I dare say Bridget also had her own interests that she spent time on. Certainly Deb and I spent lots of time pursuing seperate interests, there's nothing selfish in that, quite the opposite in my view, she wouldn't have wanted to have to be involved with everything I did or have me reluctantly tag along with her activities. Having some seperate interests is perfectly natural and maybe makes the time spent together on shared interests all the more special. It's not the past use of time that I regret, it's all the lost opportunities in the present and future.
Andy.
 

blackmortimer

Registered User
Jan 2, 2021
289
0
I have been thinking about regrets during this enforced period of mourning waiting for the funeral. When I was a student the now classic Edith Piaf song "Je ne regrette rien" was high in the charts. It chimed well with the existentialist philosophy then much in vogue and it as it were seemed to enter my blood stream. I recalled the song when going through the boxes of old photographs and mementos that Margaret had hoarded and then put away with her high disregard for any kind of order or sorting. So I found photographs taken on the beach in 1976 alongside a wedding in 1997, Margaret's trip to America with two girl friends in 1990 and so on and so on each photograph eliciting a fresh memory of a time in our life. I experienced a warm glow of love as again and again I was reminded of some particular time or event or just a fleeting glimpse of character caught in a particular shot. A sort of whistle stop tour of 48 years of marriage but, I realised no regrets. I know that looking back over the past is painful for some, but for me it's a sort of healing balm which has reminded me first that I have not lost Margaret, she is still with me and always will be and secondly that, with Mlle Piaf "no, I regret nothing". God bless you all.
 

update2020

Registered User
Jan 2, 2020
67
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One of the memorable comments Sergio makes in the docufiction I mentioned above is that he has not lost his wife, and he cannot move on to another relationship because she is still 'here' and 'here' (touching his head and his heart).
 

Dutchman

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May 26, 2017
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Devon, Totnes
I’m not sure about moving on to another relationship. Of course I’d like someone in my life but Bridget represents all I ever wanted and I can’t replicate that. I don’t think I’d be much good to anyone now anyway. I think I’d always be comparing and that wouldn’t be right. And probably the same for someone else.

Who knows?
 

update2020

Registered User
Jan 2, 2020
67
0
@Dutchman i guess everyone is different, and one more thing not to feel guilt about.

Anyway do watch the film - there are extra layers to it because it gently explores the ways in which people with dementia live their own reality - as, in a way, we all do. its a very positive film for all its sadnesses.
 

Dutchman

Registered User
May 26, 2017
1,515
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73
Devon, Totnes
@Dutchman i guess everyone is different, and one more thing not to feel guilt about.

Anyway do watch the film - there are extra layers to it because it gently explores the ways in which people with dementia live their own reality - as, in a way, we all do. its a very positive film for all its sadnesses.
Thanks @update2020 .

I had a quick look at the trailer and will sit down and watch properly tonight. Thanks for all your good advice and reality checks. Little by little I find I’m coming out of this quagmire of dementia loss largely because I find such support and friendship from you and others.

👍
 

blackmortimer

Registered User
Jan 2, 2021
289
0
I haven't posted for a little while because I've been much taken up with helping the children to arrange the funeral and to physically sort things out. Now all that's under control, hopefully. and I thought it might be helpful for those of you still on the dementia journey if I set down a few thoughts, deriving from my journey of about 6 years and my recent reflections on it:-
1. Get a diagnosis sooner rather than later. I fell into the trap of fooling myself that Margaret's hallucinations (which appeared early) were down to delirium maybe from a UTI or similar. Accept that maybe it is dementia and get to the doctor and then on to the memory clinic sooner rather than later. It takes long enough anyway.
2. Don't think you're superman/woman. The fact that you may have always been in a sort of caring/providing/bread winning role for years doesn't qualify you as a mental health nurse! You will probably need help. Ask for it.
3. You will get tired, frustrated, angry, you name it, with the behaviour of your partner. You will become depressed, feel inadequate, then feel guilty even blame yourself for somehow "causing" the dementia. If, so you need help. Get it.
4, Transferring your partner to a care home or nursing home is not a betrayal. There comes a point where you can't cope and it's not safe to cope. If necessary do what I did and call an ambulance particularly if either of you is in physical danger. Better still, before it comes to that look at the options, the care homes available locally, funding etc and get the wheels in motion. Don't leave it until you're overwhelmed.
5. Accept that dementia is a terminal illness. I didn't and felt that as long as Margaret's heart condition could be kept under control all would somehow be well and that dementia notwithstanding she could still outlive me. I was wrong. She died of dementia. It says on her death certificate "cause of death - Lewy body dementia". Couldn't be plainer.

I'm probably teaching my grandmother to suck eggs. If so accept my apologies. But if anything of my journey can help anyone else better cope with it I feel honour bound to pass it on. God bless you all
 

Old Flopsy

Registered User
Sep 12, 2019
274
0
Hi @blackmortimer - what a well written body of advice. Sadly most of us bumble our way through this nightmare and it is only later that we can logically gather our thoughts together and collate what we have learned!

I well remember losing it when I again witnessed my OH urinating on my plants in the garden- my much loved violet did not survive the regular onslaught, but miraculously a new violet seedling has begun to grow.
 

Violet Jane

Registered User
Aug 23, 2021
393
0
All very wise advice, Blackmortimer. I think that it’s very natural not to face up to the possibility of dementia until you can no longer avoid it as the prospect of a dementia diagnosis is terrifying.
 

Violet Jane

Registered User
Aug 23, 2021
393
0
Blackmortimer, your point about dementia being a terminal illness is interesting. Even this site talks about it being a life-limiting condition. When my mother was diagnosed I came away with the clear idea that her dementia (Alzheimer’s Disease in her case) was a terminal illness but unless people are told this they may not be aware of this - and may not think to ask. My mother was otherwise fit and healthy and was not taking any medication at all, not even for Blood Pressure, but in the later years of the illness she became frail and prone to falls, like many other people with dementia. She was diagnosed at 80 (but was showing symptoms for a couple of years before that) and died at 87. It’s interesting to speculate how long she might have lived if she had not developed AD. Possibly a few years longer but possibly not.

I’m not quite sure why dementia is a terminal illness. Is it because the brain is gradually being destroyed or is it because people with dementia become prone to more infections, for a variety of reasons and despite the best efforts of their loved ones and carers, and over time they weaken the body until eventually the body can no longer fight infections at all? My mother’s death certificate listed upper respiratory tract infection, frailty of old age and Alzheimer’s Disease. I think that people will have seen in the media that dementia is now the leading cause of death for women.
 

jennifer1967

Registered User
Mar 15, 2020
6,769
0
Southampton
Blackmortimer, your point about dementia being a terminal illness is interesting. Even this site talks about it being a life-limiting condition. When my mother was diagnosed I came away with the clear idea that her dementia (Alzheimer’s Disease in her case) was a terminal illness but unless people are told this they may not be aware of this - and may not think to ask. My mother was otherwise fit and healthy and was not taking any medication at all, not even for Blood Pressure, but in the later years of the illness she became frail and prone to falls, like many other people with dementia. She was diagnosed at 80 (but was showing symptoms for a couple of years before that) and died at 87. It’s interesting to speculate how long she might have lived if she had not developed AD. Possibly a few years longer but possibly not.

I’m not quite sure why dementia is a terminal illness. Is it because the brain is gradually being destroyed or is it because people with dementia become prone to more infections, for a variety of reasons and despite the best efforts of their loved ones and carers, and over time they weaken the body until eventually the body can no longer fight infections at all? My mother’s death certificate listed upper respiratory tract infection, frailty of old age and Alzheimer’s Disease. I think that people will have seen in the media that dementia is now the leading cause of death for women.
i think terminal because there is no way back or recovery of it. life limiting because it may well shorten life. there is no cure which is why its terminal. i dont think it matters what expression you put on it, the end result is the same.
 

kindred

Registered User
Apr 8, 2018
2,770
0
Blackmortimer, your point about dementia being a terminal illness is interesting. Even this site talks about it being a life-limiting condition. When my mother was diagnosed I came away with the clear idea that her dementia (Alzheimer’s Disease in her case) was a terminal illness but unless people are told this they may not be aware of this - and may not think to ask. My mother was otherwise fit and healthy and was not taking any medication at all, not even for Blood Pressure, but in the later years of the illness she became frail and prone to falls, like many other people with dementia. She was diagnosed at 80 (but was showing symptoms for a couple of years before that) and died at 87. It’s interesting to speculate how long she might have lived if she had not developed AD. Possibly a few years longer but possibly not.

I’m not quite sure why dementia is a terminal illness. Is it because the brain is gradually being destroyed or is it because people with dementia become prone to more infections, for a variety of reasons and despite the best efforts of their loved ones and carers, and over time they weaken the body until eventually the body can no longer fight infections at all? My mother’s death certificate listed upper respiratory tract infection, frailty of old age and Alzheimer’s Disease. I think that people will have seen in the media that dementia is now the leading cause of death for women.
The brain can no longer support the breathing function. Dementia has taken away that part of the brain.
 

Dutchman

Registered User
May 26, 2017
1,515
0
73
Devon, Totnes
All the while I visit Bridget and she responds to me, she walks a lot, healthy appetite, sleeps well, etc, then I fool myself into thinking that she’ll outlive me. I put to one side the knowledge that her life expectancy is very limited and one day ( who knows when) she’ll deteriorate and I’ll begin to lose her.

So I live from week to week just visiting and just doing the best I can just to be with her.

Peterx
 

Dutchman

Registered User
May 26, 2017
1,515
0
73
Devon, Totnes
I was thinking today that the longer this goes on and the more I just live on my own then the more I’ll get used to it.

I’ve never lived on my own before and even before Bridget went into the home in 2019 we were kind of living apart anyway. There was no
real loving from her as the dementia had destroyed any warmth and tenderness. Coping just about I felt under tremendous strain and, to be honest, I wanted it all to go away.
So things before dementia were “normal “ and routine and we lived our lives without a thought of dramatic change, then life was ordinary and mostly like other people’s.

So I wonder what now? I’ll go see Bridget and love her, care as much as I can from a distance and keep her in my heart for ever. There’s just not enough of my life left to get to begin to come to terms with all of this and then share a long time with another.

I’m lonely and never thought I would be. And now I know what others here are going through and my heart goes out to you.
Peter
 

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