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Dementia’s journey

jennifer1967

Registered User
Mar 15, 2020
4,425
0
Southampton
i was going to say the same that the home is knowing what needs doing and doing it. tele and music as well as you, theres not much else they can do better. visit how you want to but dont let it overwhelm you that you are having problems. maybe quality over quantity to get the best out of yourself if you understand.
 

Pusskins

Registered User
Jun 6, 2020
276
0
New Zealand
Sounds like good news, @Dutchman. You've hit on what I think is the nub of the matter - really believing that Bridget's world isn't like yours. It's taken me an awfully long time, but I think I might be there although every so often I waver, so don't beat yourself up if you have blips. Just try and believe and I think that you'll find it easier to cope. One thing you can say - the home really seem to be stepping up to the plate and it doesn't seem you need have qualms about the level of care. So give yourself a break, get a good night's sleep - you deserve it.

God bless,
@Dutchman It has all been said by others answering your latest post. Bridget is not suffering, but you are allowing yourself to do so. Counseling, or perhaps the counselor you have is not giving you the solutions you need. Perhaps a different counselor might do the trick? You really should not be suffering the way you are at this stage. It is never easy, but we have to find ways to cope. Otherwise we'll all go under.
Blessings.
 

Dutchman

Registered User
May 26, 2017
1,197
0
73
Devon, Totnes
Hello Pusskins. ( @Pusskins ). @blackmortimer @jennifer1967

Thank you for your kind reply. As always you’ve been there for me and I’m humbled by how all my friends on the Forum have kept me company throughout all these years since I first started back in 2017, the year of Bridget’s diagnosis.

I’m mindful that I haven’t been supporting you in the same way. Perhaps my outpourings have helped in some way (I hope so). I’ve realised in all of this that I’m quite a needy person. I’m not a bloke who keeps it all
in ( quite the opposite!) and I think it’s healthier to be that way. Although it surprises many of my male friends who just grit their teeth. If the helps there grab it. I’ve few inhibitions in that respect.

Anyway, apart from my ( it seems) go daily posts I’ll try to support you all more specifically and in general.

My wish for some peace in your lives goes out to you all. Peterxx
 

blackmortimer

Registered User
Jan 2, 2021
126
0
Speaking entirely for myself, @Dutchman , I think it's we who should be thanking you. I find that after reading your posts I am able better to understand my own feelings and how to deal with them. So much of what you write chimes so closely with my own feelings about my position vis-a-vis Margaret and that is an enormous source of support and strength.

God bless,
 

update2020

Registered User
Jan 2, 2020
19
0
of course you help us. we would not be sticking with the thread if you didn't. I really cannot find the words myself to describe our 'journey' but reading your thoughts means that I don't have to try and I know that I am not alone @Dutchman .

I really hope that you can give yourself permission to suffer less. Your wife is well cared for and you should be too. What does the cat think? Something very wise, I am sure :) . Mine is telling me it is tea time.
 

Dutchman

Registered User
May 26, 2017
1,197
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73
Devon, Totnes
My cat is purring away. She’s had her meal and is now curled up on the sofa. Simple pleasures.

my visit today went well. Bridget had her walking practice and is putting more weight on her legs and actually lifting her foot up on the damaged side . Encouraging.

The home are putting a tv in and Lenard Cohen was playing as I went in. She’s seems calm.
👍peterx
 

update2020

Registered User
Jan 2, 2020
19
0
My cat is purring away. She’s had her meal and is now curled up on the sofa. Simple pleasures.

my visit today went well. Bridget had her walking practice and is putting more weight on her legs and actually lifting her foot up on the damaged side . Encouraging.

The home are putting a tv in and Lenard Cohen was playing as I went in. She’s seems calm.
👍peterx
Excellent.
 

Dutchman

Registered User
May 26, 2017
1,197
0
73
Devon, Totnes
I’m comforted by the thought that Bridget is not going through the feeling of loneliness, isolation, awareness of her condition and all those other emotions that I struggle with day on day. Your latest comments have shifted my perception of these worries. So many thanks to you all.

I went for a late walk down by our river Dart last night and as I got back home my neighbour invited me in for a drink. I’m well supported by the few friends and neighbours that have stuck by me all this time. Add to that all the loving support I have from you here and I’m very blessed.

If you are at all like me you’re searching for that one book on grief that would make all the difference. Perhaps books like this don’t do it for you but I’m always looking for that one book that might contain that one passage that gives comfort. I’ve found they more or less all say the same but one or two have been helpful. If anyone needs my recommendations just ask.

It’s Saturday, I’m not planning to visit today and, hopefully, I can rest knowing that Bridget won’t miss me, is well cared for and there’s nothing I can do to improve her welfare. That’s the hope anyway. Of course in reality nothing is that simple and I’m feeling, right now, a sense of dread, unease for the future and all the those feelings that we all have that give us that firm connection with each other. Brothers and sisters in this horrible grief experience.

peterx
 
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big l

Registered User
Aug 15, 2015
73
0
@Dutchman It has all been said by others answering your latest post. Bridget is not suffering, but you are allowing yourself to do so. Counseling, or perhaps the counselor you have is not giving you the solutions you need. Perhaps a different counselor might do the trick? You really should not be suffering the way you are at this stage. It is never easy, but we have to find ways to cope. Otherwise we'll all go under.
Blessings.
Pusskins, I have read Dutchman's heartbreaking posts for months now - I have responded too. I rather agree with you that perhaps a fresh perspective would help - a more empathetic counselor ? I have my OH at home - the man I love is disappearing BUT I am trying desperately to keep my glass half full, because otherwise I couldn't cope. But I DO, oh I do recognise the 'guilt trip 'I shouldn't have the temerity to enjoy myself.' So very sad. Dutchman you are not finding it easy, I know, but you need help to restore your self esteem.
 

lollyc

Registered User
Sep 9, 2020
230
0
But I DO, oh I do recognise the 'guilt trip 'I shouldn't have the temerity to enjoy myself.
I try, not always successfully, to tell myself that happiness is not a finite resource - by which I mean that me enjoying something does not somehow mean that my PWD is correspondingly 'robbed' of that amount of happiness.
 

kindred

Registered User
Apr 8, 2018
2,670
0
I have now changed my picture and shows me holding Bridget’s hand during her time in
A and E . Just a picture of all I could do at the time.
This is beautiful, Peter. As you know, I volunteer at the nursing home where Keith died and I spend time with families. I hear such a lot of suffering such as yours. I went through it myself as you know. I spent my spare time trying like you to find the words that would make the grief less appalling. In a terrible, terrible situation you are doing well, loving, and endlessly. Please believe me that you have nothing to regret. Some horrible situations can’t be solved and we can’t change our mindsets radically. with you all the way. Kindredx
 

Dutchman

Registered User
May 26, 2017
1,197
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73
Devon, Totnes
I just woken up, it’s 0.800, got a cup of tea and biscuit and I’m now back in bed typing this.

Immediately I wake I feel a sense of fear, real fear, at what I’ll find when I visit the home this morning. I could take the easy way out and not go but I’d regret it I know because I’d feel I was letting her down. That’s irrational I know because she wouldn’t be aware of me not going.

The whole business of going to see her has changed from a neutral, more or less the same thing every time ( flowers, little walk, chat), to seeing someone who has dramatically changed from the result of her fall. I’m told she’s not eating as usual.

So let’s talk about dying if I could. Is it so bad and horrible of me to want this all to stop? I seem to sense that people know what’s going to happen, that this could be the downward movement towards death but, of course, no one mentions anything to me
( elephant in the room). If she’s gone I’d be the same here, on my own, but I’d be free of this endless worry and uncertainty. I’d be grieving at her passing but I grieve anyway, so in many ways my world would change, but not dramatically.

Or am I fooling myself? Would Bridget’s death devastate me in ways I can’t imagine? I mean it’s not like she was ok and stepped under a bus, there one day gone the next.

Do dementia sufferers sense their mortality or are they like animals, blissfully unaware? I suffer but I’m reliably told that Bridget doesn’t, that she’s content ( is she?) in her dementia bubble.

I sure that once the visits over and I’m back home I’ll probable be ok - till the next time.

peterx
 

Dutchman

Registered User
May 26, 2017
1,197
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73
Devon, Totnes
Just spoken to the home and they tell me she’s not opening her mouth for feeding. I’m going in at 12.30 to assist with her dinner. So walking and now feeding problems

I mean, is this it then? Is this the downward spiral into death? I’ve always thought I’d have more time with her with some sort of relationship. I’ve been fooling myself into thinking that maybe another year, please another Christmas and I’ve pretended her death will, in fact, be later rather than sooner, as it’s easier that way.

I’ve blanked out the thoughts of deterioration because my mind cannot cope with this continuing anxiousness day after day.

So I’m waiting the next couple of hours till I leave and I’m consumed by fresh thoughts of the whole business of her slipping away.

Dementia is so dirty and messy, unforgiving, relentlessly messing with ones mind ( me and her), evil and awful, never letting a relationship remain and twists the knife every time I see her. Oh for a quick death from a heart attack or some suchlike.

Peter
 

canary

Registered User
Feb 25, 2014
15,188
0
South coast
"Just spoken to the home and they tell me she’s not opening her mouth for feeding. .....<snip>.....I mean, is this it then? Is this the downward spiral into death?"
The trouble with this damn disease is that you just dont know.
She may rally. As dementia advances people dont need so many calories. The doctors may prescribe fortisip (a high calorie drink) that will be sufficient. She may remain like this for a while.
Or it may indeed be the beginning of the end.
Its the not knowing that is so hard
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))
 

Dutchman

Registered User
May 26, 2017
1,197
0
73
Devon, Totnes
Sorry fellow posters but I’m at that stage where I don’t want to going on living but don’t want to die.

The change in Bridget’s condition has brought home to me that life will be meaningless without her and, without her to care for, I am redundant. The only people who would miss me are my daughters and their families are super supportive

I want this misery to finish and I’ve been unhappy for so long now I can’t remember how to be happy, especially on my own.
Peter
 
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jennifer1967

Registered User
Mar 15, 2020
4,425
0
Southampton
Sorry fellow posters but I’m at that stage where I don’t want to going on living but don’t want to die.

The change in Bridget’s condition has brought home to me that life will be meaningless without her and, without her to care for, I am redundant. The only people who would miss me are my daughters and the

I want this misery to finish and I’ve been unhappy for so long now I can’t remember how to be happy, especially on my own.
Peter
we would miss all your sharing and good advice. how was Bridget? did you manage to feed her?
 

Andy54

Registered User
Sep 24, 2020
33
0
@Dutchman , I'm sorry to hear you so despondent Peter, I was really hoping your post today would have more positive news. I know this may sound a bit of a cliche but I urge you to dig into your reserves of strength, Bridget might not be responding in the way that you hoped but she still needs you on her side.
Best wishes, Andy.
 

Dutchman

Registered User
May 26, 2017
1,197
0
73
Devon, Totnes
Hi everyone. You’re all so kind. Yes I fed her in the end despite her reluctance to open her mouth. Just sitting there looking at her in this reduced state just breaks my heart and I cried in front of her, something I promised myself I wouldn’t do, as this could upset her.

I m going again tomorrow, then Wednesday and then Friday. It gives me a break that way.

I’m useful so that’s good for me.
Thanks again
 

Dutchman

Registered User
May 26, 2017
1,197
0
73
Devon, Totnes
I’ve decided to not visit Bridget today. I’ll phone the home soon to tell them.

I just can’t face it today. The upset when I’m there, seeing her like she is, is just too much. Am I selfish and mean? Bridget doesn’t know me and won’t know I not coming today and the home is really looking after her well.

Im only human and I think I need rest from this worry and anxiety. My poor Bridget is always in my thoughts. The only time I nearly escape is in sleep and then dreams get in the way.

My cat had her first adventure into the garden yesterday and loved it. Came back for her food- she’s very easy to be with.

Peterx❤️
Bless you all