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Dementia’s journey

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
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❤️
@Dutchman I'm sure it's the same for all of us. Firstly, I am convinced MH did his best to hide what was happening. 5 years ago I noticed him forgetting words, but put it down to old age and certainly didn't want to think of any other possibilities. However, I now believe MH's dementia started years before that, possibly as far back as 2009 or thereabouts. Even in 2018 when he called his watch a clock, I didn't want to believe it. I knew I would never get him to a doctor anyway, except he had to renew his driver's licence in April 2019 and failed the memory test. He has gone downhill quite quickly since then. The risperidone he is on doesn't help as far as mental acuity goes, but if he doesn't have it, he can be aggressive and uncooperative. We can never foresee the outcome for ourselves and that is one of the hardest things to deal with. Life as we knew it is over. I don't like my current status, but no matter how much I rail against it, there's absolutely nothing I can do to change anything. Can't have any lucid conversation with MH when I visit, in fact have little conversation with anybody. I still don't want to live alone, but don't want anybody other than MH in my life. May I just say: It's a bitch!
 

notsogooddtr

Registered User
Jul 2, 2011
1,040
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.
Please accept my condolences. Take care of yourself now.
 

kindred

Registered User
Apr 8, 2018
2,750
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.
Oh my dear, all my thoughts and love. I am so sorry for your loss. Geraldinex
 

SEA SPRAY

Registered User
Apr 10, 2021
16
0
So sorry for your loss, @oldflopsy. Thinking of you. Please make sure you look after yourself - and please stay on this forum.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
As most of you know I visit Bridget nearly every other day. Yesterday I played some music which she liked and immediately she turned towards my phone and said “yes” and smiled which goes to show that powerful memories can be retrieved through music. The album cover showed Leonard Cohen’s face and she said “is that you””? - I wish!!

So face recognition is really gone. I also said I was having a curry for dinner and she “you like that?”. Little meaningful things that come so unexpectedly. Trouble is I then take them out of context and want more and more and want a conversation which then sets me up for a disappointment.
Up one moment down the next😡😡
 

big l

Registered User
Aug 15, 2015
89
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.
So sorry, so very sad, but peace for him, no more confusion and no more pain. May you find some relief and comfort that his life ended peacefully.
 

Old Flopsy

Registered User
Sep 12, 2019
266
0
Thankyou, thankyou, all of you for your kind comments. Now the work begins with sorting out all the paperwork, and having to clear out his room at the care home- dreading that.