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Dementia’s journey

Dutchman

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May 26, 2017
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Devon, Totnes
This is an interesting and sad discussion. One of the hardest things about dementia is the loss of friends when you most need their support. As for people trotting out platitudes about ‘moving on’, ‘joining a club’ ‘getting out there again’ etc, whilst they can betray a selfishness on the speaker’s part they can equally well be a reflection of the fact that people tend to be solution focused in response to another person’s pain. Many people are not able to just sit with another person’s pain and let him/her express difficult feelings; instead, they feel that they need to offer a practical solution. I suppose that that’s why counsellors are beneficial; they listen without offering unsolicited advice and solutions.

Specifically on the ‘move on’ advice, whilst this might seem crass and insensitive - and the timing of such advice is crucial - nevertheless it is right to the extent that if a person never moves from the place that s/he is at s/he will never be able to make a meaningful life for him/herself after his/her loss. There is now an understanding that some people experience what is called Complex Grief, which is when people struggle to move through the ‘normal’ stages of grief (yes, I know that there are arguments about stages of grief and what is normal), and I wouldn’t be at all surprised if people who have cared for a loved one with dementia are more likely to experience this as dementia care followed by bereavement encompasses a unique combination of very difficult things: the gradual loss to the carer of the loved one over a period of years; the estrangement from family and friends; the loss of the carer’s identity as a person independent of the loved one and, sometimes, the loss of confidence around other people after years of living a very restricted and isolated life based around the needs of the loved one.
I fully understand your explanation of factors that affect the carers personality and identify whether it’s caring directly or continuing, as I do, caring remotely with regular visits to see Bridget. I’ve just spent time with a couple who say they understand how difficult is is for me but, of course, they don’t. How can they appreciate just how difficult it is to see someone who filled my life for 30 odd years who can’t comprehend who you are.

I’ve realised that a large part of my visits are spent trying to get affection from her and when today she pulled my hand up and kissed, well, it just broke my heart.

So I can’t really move on from wanting Bridget to love me, and she can’t, so I’m setting myself up to be hurt again and again.

@blackmortimer you’ve been and are going through so much and you still find time to help others. I believe you’re a braver man than me. Thanks for your help.
 

blackmortimer

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Jan 2, 2021
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I think you make good points, @Dutchman . Probably we do in some way have to move on, but (and it's a big but) only when we're ready and we must accept that maybe not all of us will ever be ready. In these last days I have tried from time to rime envisaging an alternative future for myself - sort of trying on in front of a looking glass - but so far each one repels rather than attracts. I've envisioned moving house but staying here in Suffolk, moving in with one or other of the children (not that they've so far invited me!) even moving back to where we used to live and some of our erstwhile friends still live, but having tried on , even done a twirl, what I see in the mirror doesn't seem to fit. It's too soon, you'll say and maybe it is, but Margaret will be buried here and I need to be able to go and sit and talk to her. At least now I do. Who knows how I will feel in another month, let alone a year? I might take up an interest, but what? I used to be involved, peripherally, with the parish church here but Margaret became angry when I was out too long (this was after dementia set in or at least in the early stages) so I gave up. Then there were several changes of incumbent, the new ones never took the trouble to make any contact so my interest dwindled and I don't feel inclined to take it up again, particularly as the kind of worship has become progressively lower and lower church and more "happy clappy". What I need, I suppose, is the healing comfort of quiet old school Anglicanism not easily found out here in the sticks perhaps gone for ever. All I think I'm trying to say is that it's obvious there are no quick fixes. I think you're right, Peter, in saying that friends and family want to offer something practical, possibly in part to assuage their own embarrassment at not really wanting to take on the reality of our suffering, and I don't think that's altogether unreasonable. But as I think I've said before, they have their own lives, their own problems, so they're limited in what they can take on board. That's why this forum is so invaluable. You can say what you feel and know that your amongst friends who really know what it's about. It's been a lifeline for me, at any rate. God bless you all.
 

blackmortimer

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Jan 2, 2021
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Hardly had I finished my last pot when the mail came and with it a card from an old friend of Margaret's from the old days. She had written inside remembering times past which had me in floods of tears (for the nth time today) as it so vividly recalled the pre-dementia Margaret. It also told me that I couldn't go back to that place and those times. I shall of course always remember but time only flows in one direction and we must follow. God bless
 

Violet Jane

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Aug 23, 2021
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I think that there is a widespread view that after a bereavement you shouldn’t make any big changes for at least a year and this view is backed up in cultural practices. For example, Jewish people have a further ceremony a year after the death and some Christians wait a year before they place a headstone on their loved one’s grave. An older friend has talked about the need to live through each day since her husband’s death until the anniversary of his death after which she felt that she moved to a new stage in her grief.

I think that it’s generally accepted that after a long period of caring it’s not possible to just slot back into one’s pre-caring life. Relationships have changed and other people have, to use that phrase again, moved on. Caring for a person with dementia is a profound experience which inevitably changes you and your priorities.
 

Old Flopsy

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Sep 12, 2019
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Hi @blackmortimer - yes it is still so raw for both of us. Crying leaves me with puffed up eyes so I bathe them with cold water, But it is getting better. Time marches on.

I have felt exasperated today as I am waiting patiently for OH's ashes to be brought to me but they still can't tell me when- it could be up to three weeks before a courier can deliver them. I must be patient. God be with you.
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I find it so strange that I want and need to visit Bridget and when I’m there I’m mainly trying to get her to respond to a need I have to be loved. I know of course that there is no chance of her loving me the way I want but my mind refuses to accept this so I set my self up for sadness and disappointment.

I expect others would say that I being unrealistic and unreasonable with myself and I should face reality. It’s so hard to let go, so when there’s the slightest suggestion of her being affectionate when she kissed my hand, when she wants to be kissed, then my mind plays tricks and says Bridget cares. And I’m in tears as I drive away because it reinforces what I had and can’t have.
 

Old Flopsy

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Sep 12, 2019
274
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Hi @Dutchman I think you are trying to make the most of the time you have left with Bridget. None of us know how long that will be- I always thought OH would still be there and never envisaged he would pass away so soon- even though I had been told that he was at end of life- while ever he responded I had hope and it was a shock to get the phone call telling me he had passes away.

So do keep up your visits- they mean so much to both of you. Bridget is no longer able to give you the reassurance you long for, but recall the memories that you have created over the years, and be confident that Bridget would love you the way you want if she could.

Thinking of you.
 

blackmortimer

Registered User
Jan 2, 2021
289
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Hi @blackmortimer - yes it is still so raw for both of us. Crying leaves me with puffed up eyes so I bathe them with cold water, But it is getting better. Time marches on.

I have felt exasperated today as I am waiting patiently for OH's ashes to be brought to me but they still can't tell me when- it could be up to three weeks before a courier can deliver them. I must be patient. God be with you.
I understand, @Old Flopsy . Having to wait for the ashes is similar to my having to wait for the burial, I suppose. On the debit side one feels unable to do much as its a period of mourning as yet unfinished; on the credit side it gives a period of time for adjustment. I'm beginning to feel now that the credit outweighs the debit.

I was interested in what you said, @Violet Jane , about the Jewish custom. I suspect that a year is the sort of time you need to adjust - going through a whole cycle of seasons may well be healing in itself. Particularly if like me you live in the country.

Try not to set yourself up for being knocked down when you visit, @Dutchman. I did the same, expecting or at least hoping for some glimmer of affection and leaving in tears. Best perhaps not to expect anything but do remember that deep inside is the woman you love. Cherish her, while you still have her. God bless
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I think you make good points, @Dutchman . Probably we do in some way have to move on, but (and it's a big but) only when we're ready and we must accept that maybe not all of us will ever be ready. In these last days I have tried from time to rime envisaging an alternative future for myself - sort of trying on in front of a looking glass - but so far each one repels rather than attracts. I've envisioned moving house but staying here in Suffolk, moving in with one or other of the children (not that they've so far invited me!) even moving back to where we used to live and some of our erstwhile friends still live, but having tried on , even done a twirl, what I see in the mirror doesn't seem to fit. It's too soon, you'll say and maybe it is, but Margaret will be buried here and I need to be able to go and sit and talk to her. At least now I do. Who knows how I will feel in another month, let alone a year? I might take up an interest, but what? I used to be involved, peripherally, with the parish church here but Margaret became angry when I was out too long (this was after dementia set in or at least in the early stages) so I gave up. Then there were several changes of incumbent, the new ones never took the trouble to make any contact so my interest dwindled and I don't feel inclined to take it up again, particularly as the kind of worship has become progressively lower and lower church and more "happy clappy". What I need, I suppose, is the healing comfort of quiet old school Anglicanism not easily found out here in the sticks perhaps gone for ever. All I think I'm trying to say is that it's obvious there are no quick fixes. I think you're right, Peter, in saying that friends and family want to offer something practical, possibly in part to assuage their own embarrassment at not really wanting to take on the reality of our suffering, and I don't think that's altogether unreasonable. But as I think I've said before, they have their own lives, their own problems, so they're limited in what they can take on board. That's why this forum is so invaluable. You can say what you feel and know that your amongst friends who really know what it's about. It's been a lifeline for me, at any rate. God bless you all.
Interesting what you say @blackmortimer about the church. I’m quite a new Christian I was literally brought into the church after falling outside the building on one rainy Sunday back in 2019. They took me in, looked after me, gave me a dinner and since then I’ve never looked back. It’s very family centred and I find my comfort from the informality. But I understand completely what you mean by”old school Anglican” because the other church next door to me offers exactly that. …. the quiet traditional comfort. Perhaps God is waiting, perhaps you’ll know later.

Peter
 

Dutchman

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May 26, 2017
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Devon, Totnes
I feel sometimes that I’ve not much else to say, that all the experiences of losing Bridget and the continued sadness of seeing her in the home are with me, but what else can I say? The emotions I have are so much part of me now I feel that my actual personality has changed. I know I’ve become less tolerant of certain attitudes and had to become harder when making decisions regarding both myself and Bridget’s welfare.

There is the one big sadness still to come of course when she slips away but I’ve no way of knowing how that will affect me, but I imagine it and it’s both frightening and daunting.

One good thing that has come out of all this is finding my friends on this Forum. So much love and help in extremely difficult circumstances from those who are filled with sadness and heartache.

Peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I’m suddenly in tears and my throat hurts. I’m just sitting in the quiet of the front room and realise that her body will never come in again to fill the space between me and the door. But I see her and it hurts that my mind has filled the space with a illusion. Everything is empty of her and her physical presence. I’m on my own which I’ve never been before and it’s still so unusual, so strange.

When you live with someone for a long time you take it all so much for granted. The noise, the movement, the bulk of someone, questions, answers, someone occupying your world all the time.

I’m advised not to dwell on it too much but how can I not when the stillness and silence remain and I find it difficult to just move about with nothing to motivate me. There’s no one else to tidy so there are always unmoved bits around. I concentrate on priorities like reading or a film which only need me to be in the corner of the sofa. Who else cares?

It seems I’m moaning too much but it’s times like this when I want her back so much. I want her out of the care home and back here to pick up our lives again. All the time she’s alive I know that dream will always be with me and so I’ll always have this longing and sadness.

Peter ( feeling sorry for myself)
 

kindred

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Apr 8, 2018
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I’m suddenly in tears and my throat hurts. I’m just sitting in the quiet of the front room and realise that her body will never come in again to fill the space between me and the door. But I see her and it hurts that my mind has filled the space with a illusion. Everything is empty of her and her physical presence. I’m on my own which I’ve never been before and it’s still so unusual, so strange.

When you live with someone for a long time you take it all so much for granted. The noise, the movement, the bulk of someone, questions, answers, someone occupying your world all the time.

I’m advised not to dwell on it too much but how can I not when the stillness and silence remain and I find it difficult to just move about with nothing to motivate me. There’s no one else to tidy so there are always unmoved bits around. I concentrate on priorities like reading or a film which only need me to be in the corner of the sofa. Who else cares?

It seems I’m moaning too much but it’s times like this when I want her back so much. I want her out of the care home and back here to pick up our lives again. All the time she’s alive I know that dream will always be with me and so I’ll always have this longing and sadness.

Peter ( feeling sorry for myself)
Peter, with you all the way. I’m sure loads of us on here know all about the corner of the sofa I so know about the longing. Love and best, kindred.
 

blackmortimer

Registered User
Jan 2, 2021
289
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I wish I could say something to ease your pain, @Dutchman, but there's nothing save to say I've been exactly where you are and I know and understand. Thinking of you. God bless.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Hello @blackmortimer and @kindred. Thanks for reply. I know there very little anyone can say to soften the heartache of loss. Sometimes I think that my emotions are particular to me but then I’m reminded that we who are lonely are suffering from exactly the same thing. In many respects I suppose we just have to get on with it. I don’t see any other alternatives.

I went to see Bridget yesterday for lunch and while I was there just being with her, walking around the corridors, she said to the
staff “ this is my friend “. It’s all I can hope for because at least it’s some recognition. She’s so well looked after and that should be enough but, of course, it isn’t. I miss her but because I love her so much I want her to be happy and the home seems to provide that happiness.

I think about you both and my other long time friends here constantly
 

blackmortimer

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Jan 2, 2021
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Hello, @Dutchman . Your thoughts are much needed today. Yesterday evening and this morning I was sorting through a box Margaret kept with all sorts of things that meant something to her, cards, pieces of her writing, poems and so on on. It had some therapeutic value in that it took me back to the "golden years" long before dementia but it has also had the effect of leaving me heartbroken with grief and loss, not knowing how I shall ever cope. But, as you say, cope we must. I'm sure Bridget is happy. My experience of observing the other residents in Margaret's nursing home told me then when people from an older generation spoke of "second childhood" they were nor so far out. It may be that Bridget is in a world where. as with children at school, what matters is friendship and, if so, that you are counted as her "friend" can be counted a compliment. She recognises you as someone who cares about her, is there to fight her corner maybe, so go with it and be her friend. Above all enjoy her presence while you still may. God bless.
 

Old Flopsy

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Sep 12, 2019
274
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Hi @blackmortimer and @Dutchman and all of you who contribute to this thread-approaching 3000 posts now!

Oh @blackmortimer how I recognise feeling that I was at the home to 'fight his corner'- I was always watching points, looking for what might be needed to improve his enjoyment of the new life in the home- away from all that was familiar to him- but eventually he did say to me 'I wouldn't mind staying here'- that was a lovely moment as I knew there was no choice by then.

I too have been trawling through his paperwork- documents from when he did National Service on Christmas Island where they witnessed the testing of the atom bomb- what an evil weapon. He always said he was lucky to be still alive.

I keep thinking that I will survive this huge loss but maybe I am still in shock and it will hit me like a sledgehammer later. Thinking about you often @blackmortimer as we tread this path together. @Dutchman do try to enjoy the time you have left with Bridget- precious memories.
 

blackmortimer

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Jan 2, 2021
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I appreciate your kind thoughts, @Old Flopsy. You are also in mine at this very difficult time.

Following on from my earlier post, and entirely by chance (is anything really by chance?) my YouTube feed offered me a short video on the very subject of second childhood. It is called "When brains go bad" and is by Professor (now I think Baroness) Susan Greenfield of Oxford University and is part of a long ongoing series called "Closer to truth" which is presented by an American scientist and thinker called Lawrence Kuhn and deals with many issues, largely of consciousness, spirituality and their relation to the Cosmos. They are always engaging and thought provoking even if sometimes way beyond me, the ultimate non-scientist. However, the one I'm recommending is reasonably easy to follow if you've got just a rudimentary idea of how the brain works.

In the light of various conversations I think you, @Dutchman, and indeed other carers here might find it helpful. I will say no more. Go watch. God bless.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I appreciate your kind thoughts, @Old Flopsy. You are also in mine at this very difficult time.

Following on from my earlier post, and entirely by chance (is anything really by chance?) my YouTube feed offered me a short video on the very subject of second childhood. It is called "When brains go bad" and is by Professor (now I think Baroness) Susan Greenfield of Oxford University and is part of a long ongoing series called "Closer to truth" which is presented by an American scientist and thinker called Lawrence Kuhn and deals with many issues, largely of consciousness, spirituality and their relation to the Cosmos. They are always engaging and thought provoking even if sometimes way beyond me, the ultimate non-scientist. However, the one I'm recommending is reasonably easy to follow if you've got just a rudimentary idea of how the brain works.

In the light of various conversations I think you, @Dutchman, and indeed other carers here might find it helpful. I will say no more. Go watch. God bless.
Hello @blackmortimer. Going on from our thought about having to “get on with it” it seems to me that I’ve never really given it much thought in the past that others in similar circumstances are having to exist from day to day and suffering daily from heartbreak.

What I’m experiencing now and the heartache you’re going through was always on the outskirts of my life and, although I could imagine the pain, never in my wildest dreams thought it would happen to me. So the cozy life of pre dementia is shattered by this dreadful condition and we’re in shock. I think of you @blackmortimer and the loss of Margaret and all those shared memories and I cry for you. I’m hurting now just writing this.

When we cannot share anymore is like a steel door has slammed in our face. I know when Bridget goes the loss of that little bit of sharing ( just going to the home) will be extremely hard to bear.
God bless you and keep you. Peter
 

Dutchman

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May 26, 2017
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73
Devon, Totnes
Just finding out if what I’m doing is strange and shouldn’t be encouraged. In the afternoon around 2pm ish the emotions and feelings get to me so much that I lie on the sofa to rest, maybe for a couple of hours. Just seems a waste of time and I feel I’m retreating from the world when I ought to be “doing something”. I end up feeling lethargic and low.

But then I feel that I live in extraordinary circumstances where anything goes and whatever I do is done to get through the day. In some respects when Bridget was here we didn’t do much anyway and just sat watching tv. I’m always self judging and not allowing myself kindness regarding the situation. Couples have each other for encouragement . On your own you only have yourself to question what you do or don’t do.