Dementia’s journey

[Jaded'n'faded]

No it's not fair, @Dutchman, but to the current expression it is what it is and we have to live with it. I don't think dementia sufferers do experience the same emotions. I've just come back from a fairly extended visit and have had a chance to observe Margaret for a while both when half asleep and while awake with me feeding her. She said quite a number of things that made me think she was reliving the past. She seemed to realise it was me although it might have been the "me" from long ago. What coherent things I did pick up seemed to hark back to a time when the children were still at home, when we had two dogs ad when there were comings and goings of the children's various friends. She seemed to be quite immersed in and happy with that world. One of the clearest things she said, after I'd got her to have a drink, was "I'm going to bed now. Have you put the dogs away? I assured her I had and she lay back and nodded off. So I've every reason to think she believed she was back in that world of maybe 30 plus years ago and other conversations she seemed to be having, mainly internally, fitted in with that world. If I responded as I would have done back then she seemed content. However, a lot of the conversation was unintelligible but any emotions seemed to belong back then.

So I don't think Margaret has the same emotions about the present as I do. In fact I doubt she has any grasp of the present. But she does seem to be relatively content with the world she's inhabiting in her head and that makes me fe ng her to drink is the key to that one. Of course we all know it's a roller coaster and today was perhaps one of the highs. Tomorrow I may find myself plunging downward so I have to talk to myself and remind myself of that sobering possibiity.

One thing I should say. Whilst Margaret was sleeping, I had the opportunity to sit back, close my eyes and listen to the sounds coming from down the corridor and I have to say my admiration for the staff, their energy, their efficiency and their sheer good humour is immense. I always remind myself to tell them so. It's not a job I could do.

God bless, all

That's very interesting. I think most of us have spent time watching our loved one in their care home surroundings and wondered what exactly is going on in their mind. I concluded that their experience becomes quite dreamlike. In the later stages, my mum was still able to relate somewhat to things said to her but couldn't hold onto her thoughts, so each idea just drifted away. Much like when you wake from a vivid dream but in seconds you can no longer recall it. There would be a kind of comprehension but it lasted just seconds then she forgot what she was thinking about and we'd be back to the start.

In her final couple of weeks, she lost even this connection and became even more dreamlike, more locked-in. Something was still going on in her brain but she could no longer even try to follow her thoughts and indeed, she seemed to stop trying and just sat there watching things around her (but was clearly unable to interpret anything) or staring into space.

But she wasn't distressed. (She'd spent 3 years being distressed, angry, anxious!) It really was like living in a dream, where she experienced just snatches of memories, sights and sounds and she let it all flow over her. She died a few days later, just stopped breathing one morning. I truly believe it was peaceful because her awareness had just gone completely.

Don't forget, in order to feel strong emotions (and I'm thinking mostly about negative ones - fear, distress, etc) your brain needs to function properly. In those late stages, there just isn't enough brain power left to feel anything much.

(This is just my opinion...)

 

[blackmortimer]

I think you have a very good point, @Jaded'n'faded, it does seem to be very much like a dreamscape. I don't get any feeling that Margaret has any clear idea of where she is in the real world, but she probably does know where she is in the dream world. I'm comforted to hear how your mother finally passed away. It's exactly how I hope it will be with Margaret and that in some way she will be ready to go.

Anyway, I'm off now to the nursing home, so maybe I shall have some more to report later!
God bless,

 

[Dutchman]

Yes @Jaded'n'faded you’re probably right but my natural default position is to imagine Bridget thinking as normal.

I know intellectually that dementia has destroyed normal feelings, feelings we take for granted, but when you’ve spent the last 25 years as an ordinary couple with the conversation, banter, moans, laughter and tears, then it’s almost impossible to think differently ( for me at least).

And that makes it all the more upsetting knowing you can’t get into that closed brain and communicate. Does she feel anxious, hurt, pain, worry, sad or happy? I can only guess from facial expressions learnt over many years. When I get a meaningful expression my heart jumps for joy - I’ve been understood ??, brilliant!

 

[blackmortimer]

I'm back from today's visit. For the first hour or more Margaret was quietly sleeping with no evidence of her talking to anyone in her dreams. Then she gradually awoke and was back in her "dreamland". As yesterday, she didn't make a lot of sense, but from the few sentences that I could make out it was like yesterday. She was back in around 1990 I would guess, when the children were still at home and there were people coming and going. A few things made sense against that backdrop and when I answered a question aimed at the "me" in her dream she seemed content. I suspect that my voice fitted her internal drama. I paid close attention to whether she was expressing any emotion or pain or distress but didn't detect any either in her dream world or in the present day. In fact in the here and now she looked fairly well and relaxed. She seemed to accept it when I said I had to go and would see her tomorrow. Just lay back and seemed to go back to sleep.

I came away feeling a bit better. I'd managed to get Margaret to take a whole cup of milkshake which I think is protein-fortified and had something to drink and I felt I had to some extent engaged with her and so left her seemingly content in her own little world. Which is as much as I could ask in the circumstances.
God bless,

 

[Dutchman]

Ever had one of those mornings where you think “ what is the point?”. I don’t see much point to today, in fact I’m still in bed wondering if there’s a reason at all to getting up. It’s very quiet and all the business of the world is going on around me and no one knows if I’m ok or not.

I was with a mixed group of people last night and I tried to imagine what it would be like to have another another woman in my life, just to have a physical presence around. I can’t do it. The feeling is becoming unnatural as I’ve now spent the last few years literally on my own and, whether I like it or not, this is probably how it will stay.

I find it unnerving how I think such things but my mind lurches from loneliness to resignation, heartache and sadness and tremendous longing for her love again. I had a dream last night where Bridget was with me again, she was all well and we talked and shopped and had a meal out and I wasn’t lonely any more. So real but then we face reality when we wake up.

Peter

 

[blackmortimer]

Such dreams are cruel, @Dutchman because they offer false hope and then almost immediately snatch it away. I remember, early on in Margaret's journey through dementia, convincing myself that the hallucinations were down to delirium caused by a UTI and even persuaded the doctor to prescribe antibiotics which, because of the fluctuating nature of dementia, seemed to work for a while. So for several years it seems I was effectively in denial, thinking that she would get better then being deflated when it all proved illusory. Even when she went into hospital I caught myself thinking perhaps they could "sort her out" get the medication right and then she could come home. But it all proved illusory and I was dragged kicking and screaming to the inevitable conclusion that dementia is incurable. It may ebb and flow but over the long term it's progressive. There is only one end and in this world of modern medicine with its "wonder drugs" and "miracle cures" it's hard to accept.

So, I have no advice. All I can say, to use the trite modern phrase, is I feel your pain, but in this case I really do. I know the heartache, the loneliness, the sense of regret, in sum the anguish of all this. I can say with some confidence that I know what you're going through and my thought s and prayers are with you.

God bless

 

[Dutchman]

How the mind plays tricks! Not only in dreams. I’ve taken some charity to the shop and as I walk back home over our river Dart
bridge ( the one I stood on two years ago that early morning before they took her away) I see Bridget walking towards me in clothes I remember, in her cropped trousers,
t shirt and jacket, even the colour of her shoes. It’s so real I catch my breath and have to stop, turn away so no one can see me crying. I find it hard to breathe and I’ve just got home to write this and cry to anyone “why me, why us?” She liked to come meet me but now there no one .
I suspect others have had similar experiences and it’s so personal and unique that I might avoid this walk altogether. It’s too much.

peter

 

[update2020]

Ever had one of those mornings where you think “ what is the point?”. I don’t see much point to today, in fact I’m still in bed wondering if there’s a reason at all to getting up. It’s very quiet and all the business of the world is going on around me and no one knows if I’m ok or not.

I was with a mixed group of people last night and I tried to imagine what it would be like to have another another woman in my life, just to have a physical presence around. I can’t do it. The feeling is becoming unnatural as I’ve now spent the last few years literally on my own and, whether I like it or not, this is probably how it will stay.

I find it unnerving how I think such things but my mind lurches from loneliness to resignation, heartache and sadness and tremendous longing for her love again. I had a dream last night where Bridget was with me again, she was all well and we talked and shopped and had a meal out and I wasn’t lonely any more. So real but then we face reality when we wake up.

Peter

I know that feeling well (pointlessness). I am lucky still to be working part-time which alleviates this a little (gives me deadlines to achieve things), and I recently acquired a puppy which has been so all consuming for the first few weeks that I don't have time to think about the point of anything, its just one poo to the next (!). Im also so tired each evening that I have solved my sleeplessness problems and through the puppy I am meeting new people all the time (if only briefly).

I am absolutely certain that there is no space in my head for another human partner, though.

What distresses me most, though, is that I am not very sympathetic to others and their own sad situations. I seem just all burnt out with feelings.

 

[blackmortimer]

I think a puppy trumps any human companion any day of the week, @update2020! And as you say with a canine friend you're never short of passing acquaintances.

I was thinking about what you were saying about the mind playing tricks, @Dutchman , when I was with Margaret this afternoon. When I arrived she was being quite active at least in her mind as she was talking away to someone in her private world and it was quite clear that some drama was going on in her head. I leaned back, closed my eyes and let it wash over me and could quite easily picture the pre-dementia Margaret coming into the room and carrying on the conversation that the "now" Margaret lying in the bed was having. So I can well imagine you having a "vision" of the old Bridget especially at a location which has memories. I have often heard people speak of "seeing" a loved one who has recently died and I suspect it is the same phenomenon. Another example of "more things in heaven and earth...."?

One of the nurses told me as I was leaving that Margaret always seems more settled, or less anxious, when I'm there which (a) pleased me but (b) surprised me as She doesn't appear on the face of it to recognise me. I talk to her, get to drink some juice or whatever and she responds so she must at some level know I'm there. However, there's no way I can get any response to conversation. All I can think is that deep down she has a memory of when she was at home and I was the sole carer and that creates some kind of "normality" which she finds calming. Or am I simply being fanciful? Either way it encourages me to keep on keeping on!!

God bless,

 

[Dutchman]

I’m off to the cinema tonight ( on my own of course). Just thought it might be a great diversion to the misery of today’s visit to see Bridget. She just looked at me as I poured out my worries and sadness and smiled as would somebody listening to someone speaking in a foreign language. I speak to her as I would always have done as we shared all our thoughts

 

[DesperateofDevon]

That's very interesting. I think most of us have spent time watching our loved one in their care home surroundings and wondered what exactly is going on in their mind. I concluded that their experience becomes quite dreamlike. In the later stages, my mum was still able to relate somewhat to things said to her but couldn't hold onto her thoughts, so each idea just drifted away. Much like when you wake from a vivid dream but in seconds you can no longer recall it. There would be a kind of comprehension but it lasted just seconds then she forgot what she was thinking about and we'd be back to the start.

In her final couple of weeks, she lost even this connection and became even more dreamlike, more locked-in. Something was still going on in her brain but she could no longer even try to follow her thoughts and indeed, she seemed to stop trying and just sat there watching things around her (but was clearly unable to interpret anything) or staring into space.

But she wasn't distressed. (She'd spent 3 years being distressed, angry, anxious!) It really was like living in a dream, where she experienced just snatches of memories, sights and sounds and she let it all flow over her. She died a few days later, just stopped breathing one morning. I truly believe it was peaceful because her awareness had just gone completely.

Don't forget, in order to feel strong emotions (and I'm thinking mostly about negative ones - fear, distress, etc) your brain needs to function properly. In those late stages, there just isn't enough brain power left to feel anything much.

(This is just my opinion...)

Totally agree with you , brain function diminishes meaning loss of cognitive function. The PWD is left with an alternative reality with regard to interpreting the visual, sensory auditory situation compared to others.
A kind way of describing this is “away with the fairies “ I like to believe that it’s more peaceful as Mum does have the aggression etc anymore.
Regression was something all my PWD experienced & enforcing reality on them seemed cruel & pointless.

My Dad propositioned me … in front of my husband - why ? Because I was holding his hand & had kissed him on his cheek . please don’t get me wrong yes it was disconcerting & I dealt with it by pointing out that the man sat next to him was my husband & as I didn’t do the “naughty” with the husband it was not going happen with him.
I now smile & laugh at that memory , in Dads head he was a young man in the Fleet Air Arm on leave striding across the Cornish cliffs he loved soo much & a bit of a lad !

I hope this has made you smile , lifes not easy for any of us on here but we are all trying to muddle through somehow & a smile they say uses more muscles than a frown
xxx

 

[blackmortimer]

I’m off to the cinema tonight ( on my own of course). Just thought it might be a great diversion to the misery of today’s visit to see Bridget. She just looked at me as I poured out my worries and sadness and smiled as would somebody listening to someone speaking in a foreign language. I speak to her as I would always have done as we shared all our thoughts

I can't remember ever having been to the cinema (or "pictures" as we used to say when I was a boy) on my own. When I was a child during the war I was taken by one or more of a gaggle of female relatives, then after the war by my parents (but only ever on a Saturday) then when puberty and girls set in it became part of the mating ritual so I was always accompanied by some young lady or other, especially after I went to university and went through a dreadful phase of passing myself off as "arty" and taking them to see Ingmar Bergman's somewhat turgid but supposedly "meaningful" oeuvre. Then I got over that and binged on Hitchcock. North by North West, Psycho and The Birds all came out during that period ,so I stopped being arty and changed my taste in girls. When I met Margaret I don't think I'd ever been to the theatre except for pantomimes, which I hated - and still do - and Gilbert & Sullivan which I loved - and still do. Margaret was much more of a theatre person than I was and she introduced me to a world of "proper" Shakespeare and other delights for which I shall be for ever grateful and by way of fair dealing she allowed me to take her to the "pictures" from time to time. Fittingly, I think the last time we went was to see "Shakespeare in Love" which neatly drew together my love of cinema and her love of Shakespeare and theatre.

I have to thank you, @Dutchman , for sparking off for me a whole evening's worth of joyful reverie down memory lane and incidentally reminding me of why Margaret was and is always the girl for me! I hope you enjoyed your evening out as much.

God bless,

 

[Dutchman]

I saw a film called “bhaji on the beach”. Very funny and satisfying.
It was in our little local cinema where you sit at tables or comfy chairs.

 

[DesperateofDevon]

I saw a film called “bhaji on the beach”. Very funny and satisfying.
It was in our little local cinema where you sit at tables or comfy chairs.

That sounds lovely x

 

[Dutchman]

Weird sitting in the cinema on my own but there were others also alone so that just reinforces the feeling that I’m not alone with this situation ( if you get my meaning).

Having a day off from visiting after helping out and seeing Bridget two days running. I’ll phone later.

I had my meeting with my counsellor yesterday ( every 3 weeks now) and she thought I was doing well. She sees someone not wallowing in grief as I do keep the place tidy and clean and attempt to do other things. But, with regard to the awful moments of sadness and crying till I can’t breathe, well, why wouldn’t you do this? You’ve lost your anchor in life and your life’s bound to drift from Ok to deep misery.

All you do Peter, she said, is all you can ever do as a normal man who’s lost a wife, friend, lover and all the other stuff. You’re doing brilliant. Am I ? I wonder sometimes.

When times were normal, pre dementia, Bridget and I talked, loved, got on each other’s nerves, took each other and our life for granted, shared all the chores ( drains were mine!), rested in companionship and memories. It’s just so depressing that around the corner came dementia that ate away ( like a cancer) our lives bit by bit. I suppose the lesson is that we live more, appreciate more, hold on to our love and share the memories more. No good now.

Thanks for reading my ramblings today.

peterx?❤️

 

[Grannie G]

We can all be clever with hindsight @Dutchman. So many of us have `if only` in our lives.

The trouble with `if only` is we live as normal individuals from day to day, sometimes appreciating what we have, sometimes taking it for granted and no one can live worrying about what might be our fate.

It`s good your counselling is helping.

 

[blackmortimer]

The trouble with lessons is that we learn them too late, @Dutchman. All the things we should have done, should have said ,should have shared we only understand when it's too late. As someone once said, the problem is that life gets in the way and I think that's very true particularly so when you're caring for someone with dementia. It's only when you look back that you realise where you went wrong and then it's too late. I found when Margaret was still at home that just getting through the day was an uphill task and the sometimes overwhelming sense of inadequacy for the task and guilt for not being perfect totally got in the way. However, I think your counsellor's right. You do seem to be coping and I'd like to think that being among friends here helps. It certainly does me. Now that I have unrestricted visiting I've taken to going every day, unless one or other of the children is going to. I can't do much other than see that Margaret has some drink and maybe a yoghurt or ice cream, check that the marbling on her legs hasn't come back, talk to her and sort out the bedclothes when she has a restless spell. I stay a couple of hours or so and to be truthful where I once dreaded the thought of going now I look forward to it. I have to talk to myself and tell myself that my going isn't going to keep her alive, that she will slip away, maybe while I'm there, maybe not, and I try to prepare myself mentally. I wonder whether I'm soothing present grief at the cost of future grief. Perhaps I should do as you do, @Dutchman and take the odd day off. I don't know but I'm open to advice.

God bless,

 

[Dutchman]

My problem with taking a day off is that I feel I shouldn’t! Guilt, guilt, guilt. I always phone anyway and mostly they say “yes she’s ok” and I calm down and imagine her day without me. Then I try and keep as busy as I can as a diversion. Was gardening but it’s raining but I’ll get wet anyway - so what!

My cat is asleep oblivious to all the trials of this world.?. just having a cup of tea while paint dries on a cupboard I’m up cycling. Anything to avoid thinking about how much I miss her.
Try to have a day off @blackmortimer. You’re right that if you’re in or out won’t make any difference to Margaret. Let the staff do their job and be kind to yourself.

 

[blackmortimer]

My problem with taking a day off is that I feel I shouldn’t! Guilt, guilt, guilt. I always phone anyway and mostly they say “yes she’s ok” and I calm down and imagine her day without me. Then I try and keep as busy as I can as a diversion. Was gardening but it’s raining but I’ll get wet anyway - so what!

My cat is asleep oblivious to all the trials of this world.?. just having a cup of tea while paint dries on a cupboard I’m up cycling. Anything to avoid thinking about how much I miss her.
Try to have a day off @blackmortimer. You’re right that if you’re in or out won’t make any difference to Margaret. Let the staff do their job and be kind to yourself.

Thanks,@Dutchman, I think a day off is the way forward. In fact fate took a slight hand in things today. I arrived to be told that Margaret had eaten (or drunk?) all of her soup at lunch and had also been drinking her beaker of juice. So my presence isn't essential to any of that. I did give her a beaker of milk shake for her afternoon treat and got her to take some more of the juice but some of it spilled because she was insisting on trying to do it herself and when I clicked back into "carer" mode and tried to clean her up she said quite clearly "go away will you, you bore me rigid!". I laughed out loud because these were the exact words she had taken to using in the latter stages of her being at home. So my presence had been interpreted as her being back in the world of being "trapped"" at home in the days before she ended up in hospital. All of which seemed to be an answer to my prayers! I'm not essential to her eating and drinking as I had feared earlier and in fact I take her back to a time she probably wants to forget although for a good part of the visit she was back 30 years or so ago talking to the children calling me to deal with domestic crises and to let the dogs in to which I responded suitably (and wasn't accused of being boring!).

So as I am covered by my last Covid test for three days up to and including tomorrow, I'll go tomorrow and then give myself Sunday off and take it from there. Hopefully my daughter may be coming next week as I think she has a week's holiday from work so she can do a visit and give me another day off. Once again, thanks for the advice.
God bless,

 

[Dutchman]

Just come back from the home and I always feel better having helped and given her all I can - love and attention.

Resentment. I resent the fact that both her brother and son can’t be bothered to ask about her, have little interest in her and I don’t understand their attitude at all. It’s almost like an unclean subject that if touched upon they’ll get infected by it. How can I let go of this resentment because, after all, I have enough on my plate without mulling over this constantly? I can’t beat them into submission or persuade them by reasonable argument. “Having it out” with them would drive them further into a corner.

The problems with family. Grrrrrr!
Peter