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Dementia’s journey

blackmortimer

Registered User
Jan 2, 2021
284
0
Hi @Dutchman @blackmortimer and all the others who responded- it is much appreciated. I have been today and couldn't even get him to drink. He opened his eyes once and clutched my hand momentarily whilst I sat gazing at him for over an hour. He said not a word and appeared to be in another world. But I decided to go home and leave him to sleep.
I know exactly what you must be going through. I've been there and, to be honest, sometimes still am. Margaret says little, seems in another world and goes off to sleep. I think you're right to rake your cue to leave at that point. He's obviously not in pain, quite possibly happy in his dream world, so there's nothing to be gained by staying. As I said before, you may find he improves a little and I think probably like me you'd take that. Don't let go of hope. Praying for you. God bless,
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
I’m saying goodbye to the caravan tomorrow. I’ve sold it for far to little but it’s one more thing that can’t just sit there reminding me of better days. I’ve had to clear out all the cupboards and they’re full of memories- puzzle books, games, all the stuff Bridget collected to make our little caravan homely and special. I cried as I was putting it all into bags for sorting later.

I could imagine me on my own using it but it would increase my loneliness. Why is life so damn hard? I’ve never asked for much, just simple pleasures with Bridget when we went camping. We didn’t need expensive holidays abroad. There’s no rhyme or reason to all this heartache and I can’t make sense of it all sometimes.
 

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
There's a line in a hymn that I used to sing at school many many years ago the goes, if I remember aright, "Time like an ever rolling stream bears all its sons away". I try to remember that when I feel tempted to try and recreate the past. The stark truth is, we can't. Time is a one way street. We can't "fix" it we can't replay it with a different ending. It's over, let it go - another memory from the sixties and "That was the Week that was". The past is past, the future unknown, we can only live in the present. The sad thing is, of course, that our present is sort of frozen in time. I feel this a lot these days. Every time I go to see Margaret it's the same routine, the same faces, the same Covid test every three days, the same Margaret lying there in her dream state not recognising me and yet the routine is strangely comforting. I don't really want to visualise the future because I can't see one that will be other than bleak for me. Sometimes I think like you @Pusskins that if, as is very likely, she dies before me I should want to go with her but I know I can't because my religious upbringing tells me it's wrong, so all I can hope for is that I may go first - extremely unlikely as I'm fairly fit - and meanwhile get what crumbs of comfort I can from being with her even if she doesn't realise it. God bless,
@blackmortimer I didn't mean literally, but just wish it might be that way. However, the shock might very well kill me anyway. Although he's no longer with me in person, he's still alive and I am still as emotionally connected, perhaps even more so, with him as I've ever been, even regardless of my discovering his infidelity after he went into care. As I've said before, IF there is a Heaven and Hell, this life on Earth is Hell, whatever comes after has to be Heaven.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
@blackmortimer I didn't mean literally, but just wish it might be that way. However, the shock might very well kill me anyway. Although he's no longer with me in person, he's still alive and I am still as emotionally connected, perhaps even more so, with him as I've ever been, even regardless of my discovering his infidelity after he went into care. As I've said before, IF there is a Heaven and Hell, this life on Earth is Hell, whatever comes after has to be Heaven.
Hello @Pusskins @blackmortimer @DesperateofDevon., It seems you and me have been around for some time now. Desparateofdevon - I’m in Totnes, where are you? You have given such good advice and reassurance so thank you so much. The same goes for you Blackmortimer and you Pusskins.

I’m sitting here crying at the loss of our lovely little caravan which will be picked up this morning. It’s only a “thing” I’m told and in the scheme of things it’s people, our love ones who really matter. Dementia and all this heartache makes me reevaluate life’s priorities. So many memories will go this morning, the cash is no substitute as I would sell everything and more if I could buy a miracle and have Bridget back. Silly I know but without a doubt I would trade my life for hers.

I cannot for one moment know what agony you @blackmortimer and you @Pusskins are going through, I be lying if I said I did. I have it to come and I hope there is a better place in heaven because yes, this is hell on earth. I wish we could help each other physically but all we have is this Forum and it will have to do.

Has all this made me stronger? I seem more cynical and short tempered. I’ve had to rely on myself more and become more hardened. But it’s made me appreciate others more and the kindness found here on the Forum has blown me away.
God bless you all, Peter❤️
 

blackmortimer

Registered User
Jan 2, 2021
284
0
When I read about your selling the caravan this morning I literally shed a tear for you, @Dutchman. It's a trite thing we often say without really meaning it, but believe me I really do feel your pain. I'm not sure I could do it, but I'm weak. I suspect you're doing what's right for you and that's what matters. I don't think I would want to have such a concrete reminder of happy times past, so I salute you for your strength. You have to concentrate on the now. The past is gone and will never come again.

I visited yesterday and found Margaret slightly weaker than the day before and not seemingly eating or drinking very much. I was warned by the nurse in charge that she might slip away at any time and I accept that I have to be ready. My son's coming to visit on Sunday so I'm taking advantage of the last burst of fine weather to finish off painting the ship lap cladding on part of the house to protect against the winter, something that Margaret was always very keen on me doing so it's a sort of homage to her. By Monday we'll likely be into autumn proper. I've tidied up the garden so after this weekend I shall devote myself to Margaret and try and visit every day (petrol stocks permitting).

Thank you for your comment about Heaven and Hell, @Pusskins . I totally agree. I once recall being upbraided by a priest for voicing a similar thought. Too gnostic, apparently, but there you go, that's priests for you. Me, I shall continue to believe as you do that Hell is here and now; what is to come can only be Heaven.
God bless, all. Pray for me and Margaret, if you will.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
When I read about your selling the caravan this morning I literally shed a tear for you, @Dutchman. It's a trite thing we often say without really meaning it, but believe me I really do feel your pain. I'm not sure I could do it, but I'm weak. I suspect you're doing what's right for you and that's what matters. I don't think I would want to have such a concrete reminder of happy times past, so I salute you for your strength. You have to concentrate on the now. The past is gone and will never come again.

I visited yesterday and found Margaret slightly weaker than the day before and not seemingly eating or drinking very much. I was warned by the nurse in charge that she might slip away at any time and I accept that I have to be ready. My son's coming to visit on Sunday so I'm taking advantage of the last burst of fine weather to finish off painting the ship lap cladding on part of the house to protect against the winter, something that Margaret was always very keen on me doing so it's a sort of homage to her. By Monday we'll likely be into autumn proper. I've tidied up the garden so after this weekend I shall devote myself to Margaret and try and visit every day (petrol stocks permitting).

Thank you for your comment about Heaven and Hell, @Pusskins . I totally agree. I once recall being upbraided by a priest for voicing a similar thought. Too gnostic, apparently, but there you go, that's priests for you. Me, I shall continue to believe as you do that Hell is here and now; what is to come can only be Heaven.
God bless, all. Pray for me and Margaret, if you will.
🙏🙏 for you both. God bless
 

CAL Y

Registered User
Jul 17, 2021
71
0
@Dutchman. I feel so sorry for you. I had to sell our little van when MH was diagnosed.
It’s not “just a thing”. It was your life with Bridget. It was who you were.
I felt a profound loss of identity when ours went.
All of a sudden I didn’t know who we were anymore. It’s a very emotional thing to do.
 

notsogooddtr

Registered User
Jul 2, 2011
1,040
0
When I read about your selling the caravan this morning I literally shed a tear for you, @Dutchman. It's a trite thing we often say without really meaning it, but believe me I really do feel your pain. I'm not sure I could do it, but I'm weak. I suspect you're doing what's right for you and that's what matters. I don't think I would want to have such a concrete reminder of happy times past, so I salute you for your strength. You have to concentrate on the now. The past is gone and will never come again.

I visited yesterday and found Margaret slightly weaker than the day before and not seemingly eating or drinking very much. I was warned by the nurse in charge that she might slip away at any time and I accept that I have to be ready. My son's coming to visit on Sunday so I'm taking advantage of the last burst of fine weather to finish off painting the ship lap cladding on part of the house to protect against the winter, something that Margaret was always very keen on me doing so it's a sort of homage to her. By Monday we'll likely be into autumn proper. I've tidied up the garden so after this weekend I shall devote myself to Margaret and try and visit every day (petrol stocks permitting).

Thank you for your comment about Heaven and Hell, @Pusskins . I totally agree. I once recall being upbraided by a priest for voicing a similar thought. Too gnostic, apparently, but there you go, that's priests for you. Me, I shall continue to believe as you do that Hell is here and now; what is to come can only be Heaven.
God bless, all. Pray for me and Margaret, if you will.
Such difficult times, all I can do is wish Margaret peace and you strength
 

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
When I read about your selling the caravan this morning I literally shed a tear for you, @Dutchman. It's a trite thing we often say without really meaning it, but believe me I really do feel your pain. I'm not sure I could do it, but I'm weak. I suspect you're doing what's right for you and that's what matters. I don't think I would want to have such a concrete reminder of happy times past, so I salute you for your strength. You have to concentrate on the now. The past is gone and will never come again.

I visited yesterday and found Margaret slightly weaker than the day before and not seemingly eating or drinking very much. I was warned by the nurse in charge that she might slip away at any time and I accept that I have to be ready. My son's coming to visit on Sunday so I'm taking advantage of the last burst of fine weather to finish off painting the ship lap cladding on part of the house to protect against the winter, something that Margaret was always very keen on me doing so it's a sort of homage to her. By Monday we'll likely be into autumn proper. I've tidied up the garden so after this weekend I shall devote myself to Margaret and try and visit every day (petrol stocks permitting).

Thank you for your comment about Heaven and Hell, @Pusskins . I totally agree. I once recall being upbraided by a priest for voicing a similar thought. Too gnostic, apparently, but there you go, that's priests for you. Me, I shall continue to believe as you do that Hell is here and now; what is to come can only be Heaven.
God bless, all. Pray for me and Margaret, if you will.
Keeping you in my thoughts and prayers @blackmortimer. I believe the dementia journey for the spouse is harder than coping with sudden loss.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
I sitting here thinking about all my friends here going through really difficult times. People say “ oh, I know how you feel” but they don’t, only fellow sufferers like us can come close to understanding. I seem to live in anticipation of the next disaster and as you said @Pusskins this journey is agony and without a final point.

Looking back on the years of dementia behaviour for Bridget ( 2015 - maybe even before that - to the care home in 2019) I wonder why I never questioned in my mind the eventual outcome. What did I think was going to happen, especially faced with her dramatic erratic behaviour in 2018/19? Did I think this would go on for ever, that I would cope year after year? I ignored it all and never considered where it was all heading.

And when she finally refused to recognise me as her husband and not love me, how long did I think it would continue before the final outcome? And when she did leave all the anticipation in the world never prepared me for the shock of loss. I suppose it was a way of preserving my sanity to not face up to losing Bridget forever.

I think these things daily and wonder if this is a common way of coping, to not face up to the inevitable, to want to keep soldiering on despite knowing it can’t continue forever.

peter❤️
 

blackmortimer

Registered User
Jan 2, 2021
284
0
I think it's probably just a way of coping. Like you I can trace the development of Margaret's condition back several years and while I was looking after her at home because there were good days s well as bad I kept on keeping on hoping I suppose that somehow she would recover and not even thinking of dementia as a terminal diagnosis. Recently because it has borne down on me that there is only one end, I have sometimes so to speak opened the door a chink to visualise what may be beyond but have rapidly closed it again. So I suspect you're not alone, @Dutchman.
As you say, though, I think only those of us who have been through it, are going through it, can understand. Which is why this forum is so valuable. God bless.
 

Agzy

Registered User
Nov 16, 2016
2,084
0
Moreton, Wirral. UK.
@Dutchman I know what you meant about finding so many memory joggers when emptying your caravan having decided to sell it. I went through similar myself earlier this year when I sold mine and like you for less than it was worth and for nostalgia only, I regret selling it every day. I keep imagining how we might have used it or indeed how I might continue to use it for myself but in reality it was the right decision and it would have gone unused. Thankfully, after almost 40 years of tugging various caravans all over Great Britain and Europe, I have years of photographic and video memories to occupy my time if I ever get round to it that is.
 

Violet Jane

Registered User
Aug 23, 2021
239
0
I don’t know whether doctors are always clear enough that dementia is a terminal illness. In my mother’s case, the consultant did say that and I remember the conversation clearly because I then asked how long my mother was likely to live. I was told that average life expectancy after diagnosis of AD was seven years. Spookily, my mother lived seven years to the month after diagnosis; she was diagnosed in May 2010 and died in May 2017.

I think that it is quite natural not to think too far ahead when a person is diagnosed with dementia. It’s a valid strategy for coping with a very difficult situation, both the diagnosis itself and the practicalities of caring for the PWD. If you look too far ahead it is easy to become overwhelmed by worries and all the future uncertainties. With my mother, I had a vague awareness of how bad dementia becomes in the later stages but I didn’t dwell on this. I did take my mother away a couple of times in the months after she was diagnosed (one trip had been planned before diagnosis) because I thought that it might be the last chance for this but, beyond that, I didn’t think too much about the future.
 

Old Flopsy

Registered User
Sep 12, 2019
266
0
Hi @Dutchman @blackmortimer and all of you lovely people. I visited OH on Friday and he only opened his eyes s few times and could not speak. I sat holding his hand and he leaned his face on my arm.

Yesterday my son and his partner went to see him- two visitors was the maximum, The carer warned him that he would be shocked by the deterioration and thankfully they still went to visit- amazingly OH had his eyes open but staring vaguely around. Not drinking, not eating, but not in pain. I was so pleased that they had been.

At 9pm I got the call from the home to say he had pased away peacefully in his sleep.
 

jennifer1967

Registered User
Mar 15, 2020
6,262
0
Southampton
so sorry for your loss. i have read your threads and sitting up all night to try and prevent him falling. you sound a very dedicated wife at least your OH is now at peace
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hi @Dutchman @blackmortimer and all of you lovely people. I visited OH on Friday and he only opened his eyes s few times and could not speak. I sat holding his hand and he leaned his face on my arm.

Yesterday my son and his partner went to see him- two visitors was the maximum, The carer warned him that he would be shocked by the deterioration and thankfully they still went to visit- amazingly OH had his eyes open but staring vaguely around. Not drinking, not eating, but not in pain. I was so pleased that they had been.

At 9pm I got the call from the home to say he had pased away peacefully in his sleep.
I’m shocked. I’ve known you @Old Flopsy for a little while now and your loss is tremendously sad. Any comfort is there to be had from the fact he was at peace, no pain and he lent his face on you to show he loved you up to the end. Oh how I wish we could be with each other at times like this. A virtual arm round your shoulders is all I can offer.
Peter