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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Hello everyone. Good to hear that whatever I write is seen as helpful but as you’ve noticed it may be helpful in some way to others feeling the same. Anyway, i do feel it helps me to be open about what I’m feeling - just let it be seen as simply that.

I’ve just come back from a paddle on our Dart river and the calm and serenity of water when it’s early I find therapeutic. Also tires me out and it’s a little exercise.

I spoke to my counsellor yesterday and again she reminded me that all I do is all I can do for Bridget. She said that the longing I feel for Bridget and the heartache that brings may take ages to decline but she felt I was in a better place, not stuck but slowly in a position of some acceptance. Good to be reassured by her as I’ve known her since Bridget left here 2 years ago.

l also thank all who have supported and reassured me over time that I’m not going mad, and that, in grief, there are no structured stages, no time periods, few expectations, lots of back and forth with emotions ( all valid) and times when the slighted thing can reduce me to a crying wreck. So thank you all❤️
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
It’s Saturday and I’m visiting Bridget today and might walk a distance this afternoon but usually, after seeing Bridget, I crash on the sofa and sleep a few hours. It gets rid of time.

I’m advised that realistically and logically and intellectually I couldn’t have prevented or caused Bridget’s dementia but emotionally that’s a different story. I search for answers to make sense of it all but dementia makes no sense.

Here is a once intelligent woman who taught in school, ran a department, always beat me at Scrabble, could discuss things within groups and just wouldn’t stop talking it was annoying. And now vacancy.

She’s not in pain, is happy as far as anyone can tell, eats well and smiles at me when I visit. I should be content but I’m not. I want the old chatterbox back, someone to love me but it’s all gone and my longing for it makes me miserable and lonely.

We have to live each day as best we can don’t we , but this grief continues. Many have said that maybe when she dies it won’t be so bad, at least you’re experiencing loneliness now, you’re getting used to it. But I won’t know till it happens and I dread the day. I hope it’s quick but I suspect it’ll be long and lingering.

Here’s a thought. Bridget’s world isn’t mine. She lives in a community now, but when I visit part of me wants ownership of the life we had together. I get frustrated that she knows these people better than me. She waves at them and I’m shut out of these relationships. I can’t compete with this as I’m only seeing her max 7 hours a week. Honestly I’m jealous. Sure, I want her to be happy but with me and only me. Is that mean of me? It’s part of the wanting her love which I can’t have.
Thanks for listening . Peter
 

blackmortimer

Registered User
Jan 2, 2021
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I think you've coined a phrase that should be emblazoned on every book about dementia, @Dutchman - "dementia makes no sense". The rest of us drive ourselves mad trying to make some kind of sense of it all whilst the truth is there all the time. Dementia makes no sense so we should perhaps try to accept that simple statement and not look for logic, just go with the flow. Coincidentally, I carried out a sort of experiment with Margaret yesterday. Two big stories were all over the airwaves - the 9/11 anniversary and the amazing success of Emma Raducanu in the tennis. Both are subjects which would have been big talking points for Margaret pre-dementia, 9/11 because she regularly reminded me of where we were when we heard the news (on a Thames river bus going up to Greenwich) and the tennis because Emma started her career at the same tennis centre in South London where our younger grandson also went and achieved a little success before becoming bored with all the training and competitions.

So I initiated a conversation on both topics, but absolutely no flicker of recognition. Obviously all this is by no means scientific but given that Margaret does seem to have a dream world, it seems to be firmly set in the past before 9/11 ,before grandchildren, before tennis, so that it's the Margaret of 30 plus years ago that she's replaying in her head, not the Margaret of more recent years. I wonder if anyone else has similar experiences? God bless everyone on this grim anniversary.
 

blackmortimer

Registered User
Jan 2, 2021
280
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I'm back from visiting. Today Margaret was much more vocal and awake although making little sense. I had another go at conversation on the tennis theme as the American Open final is tonight. Also my daughter messaged me to say that not only had Emma Raducanu trained at the same tennis club as our grandson but they had had the same coach although not at the same time. So more grist to the mill. This was news that back in the day Margaret would have been thrilled about but today no recognition at all. So I think I'm right in thinking that the dementia has sent her back in time - hopefully to a place where she's happy. Certainly she seemed to be enjoying whatever company and conversation there was in her head. No sign of distress. So I came away feeling reassured and thinking what an awesome thing the brain is! In spite of the damage that gives rise to dementia it seems to have the power to create a world which, as @Dutchman said makes no sense in our "real" world but seems to make sense to the patient. I suppose one day some Nobel prize winner will figure it all out? Meanwhile, if you're into tennis enjoy this evening's special and even if you're not, God bless.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Hi @blackmortimer .

I too had a better day today with Bridget. She responded to questions, albeit with one word answers, but included facial expressions as well which, is quite a result. She even expressed emotions when I asked her about her word finding problems and it was quite upsetting to realise that she was aware she struggles. Her brain just won’t allow her to find the right words in the right order. Awful and cruel.
She went to sleep in front of me after dinner and I see that as a good time to leave.

Like you’ve done I try all sorts of old memories but nothing registers so I truly believe she’s just here in time and is settled with the routine of the home. What more could I give her? I’m in again tomorrow and might put her to bed. When I mentioned this she smiled and said “oh, really?”. Could upset me but I’ve got to try.
Peter
 

blackmortimer

Registered User
Jan 2, 2021
280
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Woke this morning to the glorious news that Emma had won the tennis - and without dropping a set! I hadn't been able to watch in case I put some ridiculous jinx on her (I am sometimes preternaturally superstitious). Then sadness because Margaret isn't here to enjoy it. I'll tell her when I see her later, but if recent efforts are anything to go by she won't register. Back in the day Margaret would have been full of it - she was always a great Andy Murray fan - so I'm dragged back to tears over the lost days that will never return. Typical of dementia. God bless
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I writing today just to unload really - no need to comment unless you feel compelled .

Guilt. That monster forever lurking around me. When Bridget was here with me I treated her badly sometimes just thinking of myself and my wants and desires.

Often I would sit on the sofa with her planning to have trips away on my own. I would think of how I could be rid of all this and because she couldn’t understand much I lied about things knowing I could get away with it. I bought a new exercise bike saying the present one was broken ( lies). I lied about other stuff ( books, clothes) a betrayal of her trust in me, a trust that we held dear. Basically I just thought of myself justifying it by saying to myself “ I deserve this for all I have to cope with”. Pretty pathetic really.

I shudder now of how mean and self-centred that was and now there no way I can make it up to her, to say sorry so she’ll understand. I could justify all this by saying what a terrible time it was and I did well coping etc, but I look in her eyes and know I betrayed her trust when she needed me the most.
Thanks for listening
Peter
 

Old Flopsy

Registered User
Sep 12, 2019
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Hi @Dutchman and @blackmortimer and other readers. Well Peter there are no words to relieve your suffering. I too lied to OH at times but it's in the past and I must learn to live with it- I can't do anything about it now. I just live one day at a time with the present stresses.

Today I have visited OH- he was in bed, dozing with his eyes shut and mouth open- he looked a sorry state. I spoke to him and he knew I was there. He refused lunch- Sunday roast, and would only accept a little icecream, and some juice. His arms are stick thin- just bones with a thin covering of skin- he looks so fragile- yet once he ran marathons. I can't help wondering how long he has got- that scares me.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Hi @Dutchman and @blackmortimer and other readers. Well Peter there are no words to relieve your suffering. I too lied to OH at times but it's in the past and I must learn to live with it- I can't do anything about it now. I just live one day at a time with the present stresses.

Today I have visited OH- he was in bed, dozing with his eyes shut and mouth open- he looked a sorry state. I spoke to him and he knew I was there. He refused lunch- Sunday roast, and would only accept a little icecream, and some juice. His arms are stick thin- just bones with a thin covering of skin- he looks so fragile- yet once he ran marathons. I can't help wondering how long he has got- that scares me.
Like you, and with regret, I really don’t have anything I could say that will make any difference to your heartache. Just know I’m thinking of you and your torment.

I got it to come, I know I have. At the moment Bridget is eating well and physically ok. But it’s the downturn around the corner that will scare me like you’re experiencing. Not only do we have all this and the loneliness and the grief but being worried and stressed. No wonder we’re depressed and anxious. It all gets into your head and lodges there.

peterx
 

blackmortimer

Registered User
Jan 2, 2021
280
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Like you, and with regret, I really don’t have anything I could say that will make any difference to your heartache. Just know I’m thinking of you and your torment.

I got it to come, I know I have. At the moment Bridget is eating well and physically ok. But it’s the downturn around the corner that will scare me like you’re experiencing. Not only do we have all this and the loneliness and the grief but being worried and stressed. No wonder we’re depressed and anxious. It all gets into your head and lodges there.

peterx
Margaret seems to be in a similar position to you OH, @Old Flopsy. Spends all her time in bed, only has fairly liquid food like ice cream, calorie shots, milk shakes, soup and so on. She also has lost a lot of weight and her limbs are stick-thin. I've got used to it now, but sometimes when I'm home I find a wave of despair comes over me at how she has declined and, like you, @Dutchman I find myself going down the rabbit hole of whether it might have been my fault in some way. I wouldn't beat yourself up about having told untruths; I used to have a policy of always telling the truth when Margaret asked me about her condition and other things, but the outcome was just the same. I might have saved myself a lot of of anguish if I'd just gone with the flow and said whatever she wanted to hear. Now that I can't understand much of what she says in her dream state, I just make up something that seems to suit her and the result is she seems happy and I don't have to stress myself. I've decided to not beat myself up about this.

By the way, I told Margaret all about Emma's triumph in the American Open including a reference to her (and grandson's) coach having been interviewed, but none of it elicited any obvious response. Further evidence that she's not really in our world, I think. On the other hand if she's happy in her world i will rest content. Let's all make a resolution to accept the hand we've been dealt and be kind to ourselves.
God bless.
 

DianeW

Registered User
Sep 10, 2013
850
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Lytham St Annes
Peter…… I think what you need to remember and focus on is that it’s the dementia that’s at fault here, not you for causing it or Bridget for getting It. Dementia is the nasty monster here, that destroys lives…….

The guilt you feel is your way of punishing yourself I’ve said so before, you seek out and look for situations where you can claim the blame in some way…. but what you told those little white lies for and longed to get away from was the DEMENTIA AND NOT BRIDGET!!!!!

Bridget is well in herself and being cared for by professionals that genuinely care for her….. she has you her loving husband watching over her, visiting and caring, and providing unconditional love as you always have.

But Peter you do have to accept that Bridget is not able to be the wife she once was any more, it’s not her choice but DEMENTIA has dictated that she can’t be all she was for you now and that’s hard to accept I know, but accept it you must.

Dementia has taken Bridget from you and robbed her of the life she deserves….. DON’T LET IT ROB YOURS TOO X
 

blackmortimer

Registered User
Jan 2, 2021
280
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Peter…… I think what you need to remember and focus on is that it’s the dementia that’s at fault here, not you for causing it or Bridget for getting It. Dementia is the nasty monster here, that destroys lives…….

The guilt you feel is your way of punishing yourself I’ve said so before, you seek out and look for situations where you can claim the blame in some way…. but what you told those little white lies for and longed to get away from was the DEMENTIA AND NOT BRIDGET!!!!!

Bridget is well in herself and being cared for by professionals that genuinely care for her….. she has you her loving husband watching over her, visiting and caring, and providing unconditional love as you always have.

But Peter you do have to accept that Bridget is not able to be the wife she once was any more, it’s not her choice but DEMENTIA has dictated that she can’t be all she was for you now and that’s hard to accept I know, but accept it you must.

Dementia has taken Bridget from you and robbed her of the life she deserves….. DON’T LET IT ROB YOURS TOO X
Well said, @DianeW . Words we all need to heed. Thank you.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,014
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High Peak
Peter, have you considered that the 'dreadful' things you did (that weren't in the least bit dreadful!) when Bridget was still at home (like imagining holidays and telling her things to keep her calm and happy) were actually your coping mechanisms? You weren't being mean or betraying her trust, you were simply trying to make life bearable for both of you. It was these things that allowed you to keep Bridget at home for as long as you did. You know yourself how hard those last months of care at home were but you found a way, didn't you? You did that out of love, so you could stay together as long as possible and you should be proud of that.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Thank you @Jaded'n'faded @blackmortimer @DianeW for those encouraging words.

I’m not sure about the “out of love” bit although, I suppose, love was in there somewhere , but towards the end I was hanging on with finger nails. Bridget had stopped loving me some months back and was aggressive and just irritated by me, just wanting to be ferried about and cared for. But obligation and a strong desire to care took over, so I’d call that love. Thirty odd years of being together counts for something.

I’m helping at the home this
Sunday ( cleaning) but I’m warned not to prop up a struggling system but helping the home and Bridget comes first.
 

blackmortimer

Registered User
Jan 2, 2021
280
0
I've been listening to a lot of phone-ins on the radio whilst driving to and from the home and this last week there was a lot about social care in the wake of the Governments announcement about the raising of NIC to fund both the NHS and social care. Clearly a lot of people seem to think that social care is struggling and their experiences back their view up. I'm sure that they are right but the issue is so complex that there's no simple answer. What I experience at Margaret's nursing home is a friendliness and compassion that is truly humbling. They are run of their feet but always find time to bring me a cup of coffee. I reciprocate by seeing that Margaret has sufficient to drink, or feed her her ice cream if offered and relieve the staff from at least one duty. I don't see that as propping up a struggling system.

Unfortunately these days everything is seen as transactional. We pay a lot of money (or the Government does) for care; therefore we're entitled to ask for a gold-plated service. But, as with the NHS, I doubt if there's enough money in the world to deliver the service that some people seem to expect. And of course no one really wants to pay!! I take the old-fashioned view that I'm extremely lucky to have Margaret looked after as well as she is and I'm eternally grateful to the people who do it. Therefore I'm happy to make myself useful if I can and do what little I can to ease their task. So I'm glad you're able to volunteer, @Dutchman . See it as a charitable act for Bridget and the people who look after Bridget. You're not propping up a crumbling system; you're showing love in the proper sense of the word.
God bless
 

blackmortimer

Registered User
Jan 2, 2021
280
0
Sorry to post twice on the trot but it has just occurred to me while vacuuming (it's raining so doing housework) that what you say about Bridget in her latter days at home - being aggressive and irritated with you - exactly describes how Margaret was at a similar stage. Which leads me to the thought that it's not a coincidence but rather what dementia does. It robs the patient of what we call love because it deprives them of the ability to empathise which in turn is probably essential to our concept of love. So they can't be blamed and we should try to understand. Now back to the Dyson!! God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Thanks for that @blackmortimer. I visited today and I’ve been shown what I’ll be doing on Sunday tea time ( cleaning mainly, emptying bins) as well as seeing Bridget. I feel quite useful and anything that adds towards the running of the home is positive.

I’m sitting on the sofa and feel a loneliness that has just appeared from nowhere. God how I miss her. She was the heart and soul of this house and the anchor of the family.

I’ve a small caravan that’s just sitting there since 2019 and I’m in a dilemma not knowing whether I should keep it or sell. We used it for 3 years and Bridget altered it with feminine touches. Would I really enjoy using it on my own? Would it remind me too much of Bridget? Would I miss it once it’s gone? Would I regret selling it? I just don’t know what to do. I wouldn’t go on extended trips anyway all the while Bridget’s still alive. But I feel it’s part of us and, even though she’s forgotten all about it, I feel selling it is underhanded and another part of Bridget gone .

These decisions are so very hard. Her clothes, her cosmetics, etc are all reminders of her not being here anymore.
Peter