Can't find my peace with what happened ...

[Marnie63]

I came here a few days ago to have a bit of a look around after being away for some time. I looked after my mum for nearly 3 years through her Vascular Dementia. firstly after her 'mini/silent' stroke which resulted in very extreme behaviour, and then 18 months later, after a full blown ischaemic stroke, which rendered her immobile and eventually bed bound. She lived to over 92 and had a reasonable life, but the last few years of her life were horrendous. Some of the kind folk on here 'sat' with me during her last few days, which were spent at the local hospital, and I will never forget the support I had. It was kind of reassuring to read that others still struggle to accept/move on/come to terms with their experiences of this horrible condition. For me it's nearly 3 years since mum died and I still feel the experience has a big hold over my life. I had a few holidays after mum died, met up with long unseen friends, managed to find a part time job again and, about 6 months ago, moved house. Maybe I moved a bit too soon, but too late for that now! I'm in a nice house, the neighbours have been welcoming and lovely, my job came with me as we now all work from home, I have friends nearby, etc., but it struck me recently that although I am coming to terms with mum's death, I am still haunted (I can't think of a better word!) by the whole experience. The things she said, the scenes I witnessed both at home and in hospital. The sadness of it all. The sadness of having been a witness to how cruelly her dementia affected her. Distraction helps, anything really, but you can't distract yourself every waking moment, and as soon as I start dwelling, it all comes back. Maybe it's just going to take a bit longer to find this peace, or to at least feel a bit more comfortable with the experience.

I don't really expect any answers, just wanted to share. I still find so many people don't understand and make upsetting comments. I guess it really doesn't matter what other people say, what's important for me is to be able to feel happier with my life than I seem able to right now. I'm not miserable all the time, far from it, but there's always this lurking sadness which seems to overwhelm and affect me in varying degrees.

 

[spandit]

It sounds trite, but time is a great healer. There's no limit to grieving but I found, in regards to my late mother (who died from cancer at 60 in 2008), after a few years I realised that I wasn't thinking about her all the time. I'll never forget her, wouldn't want to, but the more years than pass, the more life I've had without her in it.

Counselling helped me, it might help you having someone impartial to talk to but don't beat yourself up that you're still feeling sad. You've been through a traumatic time - it's a form of PTSD after all. 3 years isn't that long.

 

[Melles Belles]

Hello @Marnie63, I followed your thread while you were caring for your mother. I believe a substantial proportion of ex carers suffer from PTSD. Dementia is such a terrible disease, coupled with the lack of support and understanding from both professionals and the general public. I’m not sure what else to say apart from keep posting of it helps and there’s always someone here to ‘listen’ and maybe consider some counselling if you haven’t already.

 

[nita]

I can relate to what you're saying, @Marnie63 as I have felt much the same. It is now 4 and a half years since my mother died and the bad memories are only just staring to fade.

I think it is harder when you have had a close relationship with the person who has died and you go on feeling the need to protect them from the effects of the illness, reliving it in your mind

One thing that helped, as it has you, was keeping busy. Initially, I threw myself into cleaning, doing things all the time. You have tried that and it doesn't always work.

In late 2019 I went for counselling with a local voluntary organisation. It was a mixture of types of counselling and she tailored it to me by doing a bit of CBT (at least I think that was what it was). I gradually started talking about my past experiences and I broke down a few times. She gave me some "exercises" to do which I was dubious about at first but they did help a bit. One was to make a "mind map" of all the things that mattered to my Mum - all the positive things. Because I was low in myself I also had to list my achievements - I found that hard as I have had such a chequered life.

The counselling finished just before lockdown - I had 10 weekly sessions. Like a lot of people, I found the start of the pandemic very anxiety-inducing and I began to feel the need for more counselling. But telephone conversations didn't work so well as face to face so I stopped.

I seem to have felt better since then - maybe it is just the passage of time - or maybe the experience of the past year superseded the earlier experiences. I think the counselling did help me reframe my mindset.

So I would definitely recommend you try it and maybe bereavement counselling in particular. I think it would help if the person understood about the ways dementia manifests itself but it is not essential. My counsellor was a much younger person but she understood that my mind had a tendency to go round on a loop about unhappy past experiences.

 

[Jaded'n'faded]

Hello @Marnie63 I also remember you! My mum died Nov. 19 and I'm exactly the same - still pretty horrified and very sad about the last 3 years of her life.

Maybe that's why I'm still here. I actually find it useful to continue following familiar stories - I didn't want to leave this kind community behind.

Some members have mentioned a post-caring PTSD and I think that's what I'm feeling. It's not the grief - I've made no secret of the fact that mum and I were never close, but the whole experience has definitely changed me. If nothing else, it is sobering...

 

[Moggymad]

Hi @Marnie63
I am another who remembers you. I may have posted now & again but I mostly just followed your posts as what you were dealing with was way beyond my experience with my mum.
I agree it is a form of PTSD. The things we deal with in life do shape us. I also carry a sadness with me but it is not just from my mums dementia, it goes back beyond that time. It doesn't overwhelm me though, it is a private part of me that no one else really sees. I think it will always be there as its part of me. Lifes experiences change us. Anyone who has gone through what you have will be changed. I don't know if you have tried counselling but it may help to talk about it. Some people stay around on the forum to give advice, that in itself can be theraputic. Others find it too upsetting to be reminded of what they have gone through. I just browse & comment here & there. We all have one thing in common, an insight into a disease that is very painful to witness.
Do whatever would suit you to do. I hope soon you will find the peace of mind you need to feel happy.

 

[Duggies-girl]

I remember you too @Marnie63 My dad died early 2020 and it was the last few days that I find hard to come to terms with. The sadness of how it all ended won't go away although I try to think of the good memories and there were lots even with the dementia. Dad was very funny and I am grateful for that but the last few days were terrifically hard to deal with.

I agree with the PTSD comparison and caring for someone with dementia can be traumatic. I was frightened for a whole year, on high alert I suppose waiting for the next shock or scare. What I would like is peace of mind but it is hard to find at the moment.

Wishing you well.

 

[Grannie G]

Hello @Marnie63 I remember you too and I`m really sorry even though you are making every effort to rebuild your life, you are still haunted by memories of your mother`s final months.

I believe in the PTSD comparison. I think every one of us who has been a carer for a close relative with dementia has had a life changing experience.

It`s more than just missing them after they have died. It`s about the way they died and how we suffered having to witness this.

There is supposed to be a wonderful new film starring Anthony Hopkins,` Father`. My sister is raving about this film but she has had no hands on experience of living with a person with dementia. I imagine the majority of people who are raving about this film have no hands on experience of living with dementia.

I`m a great admirer of Anthony Hopkins but will not be going to see the film. Even if it comes on television, I`m still unlikely to watch. I`ve no need to watch it, I`ve lived it and even though I trust it will be authentic, I need to protect myself. It`s too close to home

I`m glad you came back to Talking Point Marnie. I think this may be the only place where we can all understand how you feel.

 

[Izzy]

I remember you too @Marnie63. I’m glad you’ve come back to share your feelings here. I hope it helps.

I do so agree with this @Grannie G -

It`s more than just missing them after they have died. It`s about the way they died and how we suffered having to witness this.

I also admire Anthony Hopkins but like you I won’t be watching the film. I find it very difficult to watch anything about dementia. As you say - too close to home.

 

[Whisperer]

The reference to PDST I think is very true.

My mum only died a few months ago but after nearly a year shielding a sudden down turn with heart failure, two days palliative care at a busy hospital then mum was gone. I am grieving but part of me is still in shock and numb. Spoke to a GP but I just could not explain what I was feeling. You have either experienced it or you have not.

I would suggest another problem initially is you lose your loved one but also the full time caring role. Just when you do not need more time to dwell on matters you suddenly get loads more free time.

I suggest at a certain point we stop grieving and start to move into an all embracing sense of sadness and emptiness. I hope to start a part time job in about two weeks, but in reality the spark and colour has gone out of life. I remember vividly my mum’s last few days as I sat with her, parts of her Dementia journey I wish I could forget.

Please let me make a suggestion. When mum was diagnosed I wrote up a memory book of things that had happened in her distant past. The GP said it would help me gauge the progress of her illness as we discussed them in future years. Well now I have a second memory book. It contains memories of me and mum pre Dementia. It was hard to get started but gradually memories came back. I carried a small notebook to scribble down basic details of any that floated into my mind to write up later more fully. Now when I get the bad memories I sit and read the better ones and it helps remind me mum was special and we had a special relationship.

 

[Banjomansmate]

I am lucky because I have a few videos that I took of The Banjoman singing and playing before the LBD took over and recordings he made before I knew him. Although I miss him a great deal and odd, unexpected things can suddenly remind me of the difficult months we went through, especially towards the end of his life, I can sometimes cheer myself up by watching and remembering the good times and it is these that I try to concentrate on rather than the upsetting ones.

 

[maryjoan]

Hello @Marnie63, I followed your thread while you were caring for your mother. I believe a substantial proportion of ex carers suffer from PTSD. Dementia is such a terrible disease, coupled with the lack of support and understanding from both professionals and the general public. I’m not sure what else to say apart from keep posting of it helps and there’s always someone here to ‘listen’ and maybe consider some counselling if you haven’t already.

Gosh! I so agree. I am feeling low today.
It's over 3 months since my OH moved back to the Midlands to be near his children - it was a decision by social services and myself as well, since caring for him had broken me. We never married.
He still thinks I am his partner.
Even though we rarely communicate now, as he doesn't hold conversations.
I have PoA so deal with his day to day admin etc. People are telling me I have done all I can and I should stand back from too much involvement now.
But, like so many of you, I cannot switch off my emotions so easily - We loved each other - and he still thinks happily that I am his. But he is gone. The oddness of it all is very bewildering, and I am lonely.
I have tried counselling, and Samaritans, but it doesn't help.

 

[Whisperer]

Dear @maryjoan

I suggest counselling and the Samaritans will never be able to help as a general rule, where a carer had looked after a loved one with Dementia. Unless you have real experience of the illness you cannot begin to understand. Until 2015 and mum’s trip to the Memory Clinic it would have meant nothing to me. Members of this forum reluctantly own the tee shirt, are members of a club no one wants to join voluntarily. They get it in a way others never will. You ever get really lonely or low just post here. Best wishes for your future. You really did do your best.

 

[lovegardening]

I found counselling very helpful myself but did have to search around to find the right person for me.....I agree with the PTSD comments and how little some Professionals understand the relative's position.....its a lonely path for sure at times but helpful to have a forum like this to share....

 

[CWR]

I came here a few days ago to have a bit of a look around after being away for some time. I looked after my mum for nearly 3 years through her Vascular Dementia. firstly after her 'mini/silent' stroke which resulted in very extreme behaviour, and then 18 months later, after a full blown ischaemic stroke, which rendered her immobile and eventually bed bound. She lived to over 92 and had a reasonable life, but the last few years of her life were horrendous. Some of the kind folk on here 'sat' with me during her last few days, which were spent at the local hospital, and I will never forget the support I had. It was kind of reassuring to read that others still struggle to accept/move on/come to terms with their experiences of this horrible condition. For me it's nearly 3 years since mum died and I still feel the experience has a big hold over my life. I had a few holidays after mum died, met up with long unseen friends, managed to find a part time job again and, about 6 months ago, moved house. Maybe I moved a bit too soon, but too late for that now! I'm in a nice house, the neighbours have been welcoming and lovely, my job came with me as we now all work from home, I have friends nearby, etc., but it struck me recently that although I am coming to terms with mum's death, I am still haunted (I can't think of a better word!) by the whole experience. The things she said, the scenes I witnessed both at home and in hospital. The sadness of it all. The sadness of having been a witness to how cruelly her dementia affected her. Distraction helps, anything really, but you can't distract yourself every waking moment, and as soon as I start dwelling, it all comes back. Maybe it's just going to take a bit longer to find this peace, or to at least feel a bit more comfortable with the experience.

I don't really expect any answers, just wanted to share. I still find so many people don't understand and make upsetting comments. I guess it really doesn't matter what other people say, what's important for me is to be able to feel happier with my life than I seem able to right now. I'm not miserable all the time, far from it, but there's always this lurking sadness which seems to overwhelm and affect me in varying degrees.

I seldom log in here, so just came across your post today. I felt I really missed mum last year, but thought I had crossed a line, but several things have made me realise i'm not as far on as I thought I was. I still feel terrible when I think how I responded to her at times when I was worried for her.
She once said: I love you but you hurt me. She often saido you hate me? I was n't really able to relax once she had fallen. I was on edge in case she fell on or down the stairs. I am a nervous type, and I was always worrying about things happening. When she was in respite, I felt guilty for feeling relaxed and guilty when I picked her up, and saw how glad she was to see me, whereas I was dreading her return. At the same time, I wanted to keep her out of a home, altho' I did feel guilty again when she enjoyed respite so much. I worried I was depriving her of the company she relished.
Latterly , I did recognise that she would have missed me had she been in a home permanently, but I still go over these issues in my head.

 

[maryjoan]

I came here a few days ago to have a bit of a look around after being away for some time. I looked after my mum for nearly 3 years through her Vascular Dementia. firstly after her 'mini/silent' stroke which resulted in very extreme behaviour, and then 18 months later, after a full blown ischaemic stroke, which rendered her immobile and eventually bed bound. She lived to over 92 and had a reasonable life, but the last few years of her life were horrendous. Some of the kind folk on here 'sat' with me during her last few days, which were spent at the local hospital, and I will never forget the support I had. It was kind of reassuring to read that others still struggle to accept/move on/come to terms with their experiences of this horrible condition. For me it's nearly 3 years since mum died and I still feel the experience has a big hold over my life. I had a few holidays after mum died, met up with long unseen friends, managed to find a part time job again and, about 6 months ago, moved house. Maybe I moved a bit too soon, but too late for that now! I'm in a nice house, the neighbours have been welcoming and lovely, my job came with me as we now all work from home, I have friends nearby, etc., but it struck me recently that although I am coming to terms with mum's death, I am still haunted (I can't think of a better word!) by the whole experience. The things she said, the scenes I witnessed both at home and in hospital. The sadness of it all. The sadness of having been a witness to how cruelly her dementia affected her. Distraction helps, anything really, but you can't distract yourself every waking moment, and as soon as I start dwelling, it all comes back. Maybe it's just going to take a bit longer to find this peace, or to at least feel a bit more comfortable with the experience.

I don't really expect any answers, just wanted to share. I still find so many people don't understand and make upsetting comments. I guess it really doesn't matter what other people say, what's important for me is to be able to feel happier with my life than I seem able to right now. I'm not miserable all the time, far from it, but there's always this lurking sadness which seems to overwhelm and affect me in varying degrees.

Can any of us ever feel comfortable with the sort of experiences we are going through or have been through? We just have to come to terms and learn to live with something we cannot change. I know I am traumatised by what has happened to me - I cannot forget the sights, experiences, and smells of dementia in my partners life - or the trauma that is happening now, as we move towards him having to go into a nursing home for his own physical health, because of what has happened to him mentally with dementia.
My head spins trying to work things out.

@Marnie63 - be kind to yourself, and try to remember when life was kind to you as well.

 

[Rosalind297]

I came here a few days ago to have a bit of a look around after being away for some time. I looked after my mum for nearly 3 years through her Vascular Dementia. firstly after her 'mini/silent' stroke which resulted in very extreme behaviour, and then 18 months later, after a full blown ischaemic stroke, which rendered her immobile and eventually bed bound. She lived to over 92 and had a reasonable life, but the last few years of her life were horrendous. Some of the kind folk on here 'sat' with me during her last few days, which were spent at the local hospital, and I will never forget the support I had. It was kind of reassuring to read that others still struggle to accept/move on/come to terms with their experiences of this horrible condition. For me it's nearly 3 years since mum died and I still feel the experience has a big hold over my life. I had a few holidays after mum died, met up with long unseen friends, managed to find a part time job again and, about 6 months ago, moved house. Maybe I moved a bit too soon, but too late for that now! I'm in a nice house, the neighbours have been welcoming and lovely, my job came with me as we now all work from home, I have friends nearby, etc., but it struck me recently that although I am coming to terms with mum's death, I am still haunted (I can't think of a better word!) by the whole experience. The things she said, the scenes I witnessed both at home and in hospital. The sadness of it all. The sadness of having been a witness to how cruelly her dementia affected her. Distraction helps, anything really, but you can't distract yourself every waking moment, and as soon as I start dwelling, it all comes back. Maybe it's just going to take a bit longer to find this peace, or to at least feel a bit more comfortable with the experience.

I don't really expect any answers, just wanted to share. I still find so many people don't understand and make upsetting comments. I guess it really doesn't matter what other people say, what's important for me is to be able to feel happier with my life than I seem able to right now. I'm not miserable all the time, far from it, but there's always this lurking sadness which seems to overwhelm and affect me in varying degrees.

you have pretty well described how I’m feeling, Marnie. True my beloved Mum only died 16 weeks ago and I can’t expect to have begun to move on yet but I very much fear that I will still be like this for years to come. It has been the most profound experience of my life, at the age of 65.

I too saw many dreadful things, things that I relive every night when I go to bed and that catch me unawares during the day. I was her carer for many years and was meant to be her protector but, try as I might, I couldn’t protect her, particularly during her final, horrendous month. I won’t ever be able to forgive myself, feel like my heart has been ripped out and that I’ll never feel carefree again.

So no words of wisdom from me, just 100% solidarity with you as we pick our way through life dealing with such immense sadness. People say be kind to yourself - I don’t know what that means really but, anyway, I can’t do it. People say that time will help if not heal, I can only hope that that is true. I wish us both peace in the years to come.

 

[Marnie63]

All the comments here have been such a comfort to read, even though they contain the individual sadness of each author. It has been a helpful read and thank you to everyone who has made supportive comments. It is truly comforting to know that it's not just me that's feeling like this. I am sorry for anyone who has recently lost a loved one to dementia. I can say that time has made the loss easier (it will be three years for me in a month's time), but I still have a long way to go, it seems, to 'come to terms' with the trauma of the illness. For now, I think I can only continue with the distractions and hope that the passage of more time makes the feelings easier to live with.

I was chatting to a friend recently on the phone. She has turned 80 and she still talks about the loss of her parents and she told me that it's probably something I will never 'get over'. She has no close experience of dementia, but was talking in terms of losing a parent/parents. Maybe there are three things going on with me - the loss of my mum, the trauma of the illness and the fact that I have been left alone, with many good friends, but no close family now. It's a very strange feeling, not having an 'anchor', not having someone of an older generation, close to you, to refer to, discuss with, go home to or visit. I can't change any of that, it is how it is, I just have to continue finding my way through it.

I'm not convinced about counselling. My one experience of it wasn't great. The lady was very nice but spent quite a lot of time talking about herself, which I understand is a no no! But I won't dismiss it as an idea for the future, if I feel I need it.

Maybe I need to stay with TP a bit longer to discuss these things!

 

[jennifer1967]

maybe if you do explore counselling, you set a few rules that would help you. i had a talk with mine and said this is what i want to get out of it but this doesnt work but this might. its annoying when they talk about themselves. mine kept using the same phrases like a mantra which annoyed me.

 

[Duggies-girl]

not having an 'anchor', not having someone of an older generation, close to you, to refer to, discuss with, go home to or visit. I can't change any of that, it is how it is, I just have to continue finding my way through it.

I was with dad almost all the time, even before he was ill I visited him four or five days a week. Now I have nowhere to go. I feel lost. I do see a friend once in a while and I do have a husband and son that I live with but I miss the visits. Covid hasn't helped either. I think it's going to take a long time to recover, if we can call it that.