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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.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 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.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.
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.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.
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.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)
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.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.