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Some kind of post dementia trauma, as well as the grief?

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
Just over four months since mum died. I remember the grief after my dad died, but it's very different this time. It feels like there's the grieving process, but then on top of that I keep getting very vivid flashbacks to the 'dementia horrors'. You'll all know what they are, the memories of what the disease did to our nearest and dearest.

I'm really struggling with this, but hope it's normal for anyone who has been through the experience. I purposefully went to spend Christmas with friends, which turned out to be the right thing to do, and now I'm travelling far from home, but as soon as the day is over and I'm lying in bed, all those images of what mum went through hit me again. It's so very sad and painful.

I know it's still relatively fresh, but I'm worried that those horrible memories will never leave me. I try hard not to focus on them, but they won't go away.

TP helped me so much through the time mum had dementia. I wish there was some support, somewhere to help process and deal with these feelings specifically related to the dementia memories. I guess the answer is to come back here to TP!

Am I making any sense?
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,647
0
71
Dundee
You’re certainly making sense and in my experience TP is still the place to come.

I’ve found that in the two and a half years since my husband died that kind of flashback has lessened. I still can visualise his last week in hospital but it’s no longer with me all the time.

Grief is different for everyone and takes its own time. I’m glad you’ve had a good time with friends. Please keep posting on TP. You’ll continue to get lots of support here.
 

Fullticket

Registered User
Apr 19, 2016
488
0
Chard, Somerset
You are making total sense. I had the same thing when my mum died early last year and it is still happening, though to a lesser extent. I feel guilty that I didn't do more. I feel guilty that I moaned about her and her illness. I have flashbacks on some of the awfulness.
Grief takes its own time to 'work its way' out of our systems and, like any life event, the memories will fade but not go away completely.
Give yourself some time and please keep letting us know how you are feeling.
 

LadyA

Registered User
Oct 19, 2009
13,732
0
Ireland
Hi @Marnie63 I'm rarely on TP these days, but saw your post this morning. I'm so sorry you are going through this. I'm no psychologist, but I suspect that what's happening is that now your brain/subconscious has the time to process all that happened, and all that your mum experienced, and is doing so. While you were in the thick of caring for her, and it was all happening, you needed to concentrate on getting both of you through each day. I think in those situations, our brains kind of look at what's happening, and say "ok. deal with it later." and file it away until we have the time to work through it. So, yes, I suspect your thoughts about a form of PTSD would be fairly accurate.

Give yourself time. Four months is nothing after all your mum and you went through. I would say, with each memory that comes up, just let it come, and then add "and mum is now free of all her suffering." with a smile. I know it will be hard, but it might help to put each traumatic memory "to bed".
 

Marcelle123

Registered User
Nov 9, 2015
4,852
0
Yorkshire
My Mum died a year ago now, and we were relatively lucky with her experience compared with many on TP.

All the same, there were lots of nasty scenes with Mum being aggressive or me being impatient, and these do keep popping up in my mind, and turning my grief and missing of my Mum into something more rancid and troubling.

So yes, I think it is normal. I think you did the right thing to try and distract yourself, as I find that dwelling on these sore memories only encourages my morbid brain to mope and makes me less able to get on with life.

I have read from others that eventually the dementia memories fade and that we'll be able to recall the pre-dementia person more fully. I do so hope that they're right.

I find Talking Point an excellent place to talk about my feelings now that Mum has gone, and I hope you are finding it some sort of solace here too.

Very best wishes,
Marcelle xx
 

jugglingmum

Registered User
Jan 5, 2014
6,305
0
Chester
I have had flashbacks, they were very vivid and woke me from sleep. Mine related to a specific event and were not dementia related, and the trigger for them was linked to this event, I woke up and was able to dismiss them and go back to sleep, but they did repeat day after day for a couple of weeks each time. I know others in similar circumstances(same event as I experienced) have had counselling.

If you find these flashbacks are troubling and disturbing your sleep it may be worth seeking counselling when you return home.
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
Thanks, it really helps to know others are having these difficulties too. The worst 'flashback' is to mum's last few days in hospital. I remember how I dealt with it at the time (quite well I think, considering), but thinking back it all seems so much more hideous now than it was at the time. As LadyA said, maybe because at the time I was living it, but now I'm processing it over and over.

I think it doesn't help that as well as memories of dementia symptoms, I have memories of stroke symptoms and then, at the end, aspiration pneumonia. I can still hear mum's gurgled breathing, it was so awful. I think by then the dementia had probably progressed quite fast and I think she was probably not conscious any more, but it breaks me up to think that she may have suffered at the end as well. I wish I could have somehow taken that suffering away, but I couldn't, and that's what continues to haunt me.

Major distraction is the only thing that helps right now, so that's what I'll continue to do!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,049
0
Kent
It`s strange.

I think I`m doing well, five years after loss but certain things tell me I've blanked out some of the worst times.

I could not remember the date of my husband`s funeral. I have no recollection of his final day other than my son and I going home for a bath and change of clothes once the syringe driver was in place. The days leading to his death are a blur.

I`m OK with this. It was obviously too painful and this seems to be my strategy for coping.

My heart goes out to those who have flashbacks and I really do hope they fade in time.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,133
0
Yorkshire
hi @Marnie63
I have found that with those kinds of thoughts/memories making a conscious effort to replace them with a cherished image has helped
I have a kind of mental photo collection of a few select good moments, all of which can send me off into a pleasant reverie of happy times so if a thought comes that I don't want to dwell on, I use it as a stepping stone to one of my collection and have a more positive memory in my head
it means that I am not denying the sadness but equally not dwelling on it - a kind of decision to begin to put things back in the perspective of a whole lifetime of memories - the bonus has been that sometimes I also think of events that hadn't come to mind for ages, which is comforting
 

Tin

Registered User
May 18, 2014
4,824
0
UK
Similar happening to me and strangely enough I was going to post about it, but you beat me to it Marnie, thank you. Attended a funeral this morning, a very close friend and her husband's symptoms were just a few months behind mum, sadly he died just before Christmas. So this morning was hard, but had to go to support her, she supported me when mum died.

I am reliving all of mum's Dementia symptoms and how horrible it all was, especially from the first year she was with me and the last few months of her life when she became bed bound. Just awful memories. Recently though I have found that I feel very tired around 5pm, close my eyes and I am fast asleep, but I have this vivid recurring dream - my mum is back with me, she left me but now she is back, still with Dementia, but not as I remember it. Now I know I am dreaming, but in the dream I am trying to wake myself so that I can ring my family to tell them she is back.

Also found that because of Dementia and how my mum viewed her young life with 3 children, for years I never thought about my childhood, but now I am left with such memories, I seem to be lost in my own past.

Really hope that time will heal all and I will be able to look back at this time, give myself a pat on the back and tell myself that I did a really good job as carer and that there was nothing more I could do.
 

emmamac

Registered User
Sep 15, 2009
94
0
I lost my father to dementia in 2010 and for a while afterrwards all I could recall was the horrible few months leading up to his death....his angst and frustration, anger at us for not taking him home and watching him slowly fade away. But now, when I think of him, I remember him as the handsome, capable, strong man he was and the 'dementia dad' seems like a different person. I am sure time will heal the bad memories and you will be able to cherish happier memories of your dear mum. Try to get some rest and find some time for yourself to enjoy something new if you can. Your life needs to continue now and you can have a new beginning xxx
 

love.dad.but..

Registered User
Jan 16, 2014
4,960
0
Kent
I can relate to this as well. Any terminal illness of a loved one witnessed is traumatic when reaching conclusion but I really feel dementia also throws in a double whammy along the way because of having to deal with anticipatory grief of the person essentially leaving us long before and the rollercoaster and long term intensity of having to do everything for that person long before the end comes along with very challenging behaviour or situations that many other illnesses don't require as the person retains mental capacity can make decisions choices and often stay in their own home. I felt and still do 18 mths after dad died that the shock of it all the dementia years...end of life circumstances stays for some time and at times whilst not as tearful takes me by surprise. Dad suddenly came to end life due to sepsis and after a week in hospital went back to his NH for palliative care passing away peacefully a week later I temember every moment of those 2 weeks. The shock and sadness I felt of the suddeness of his death though is eclipsed for me when before that 5 years ago finding mum dead when we arrived for her birthday lunch and dad with dementia sitting in their car and like you I still recall every minute of that dreadful day...nothing can prepare you. It is still very early days for you...it will get better and it will change...although I still have dreams about both...they are more about them still being alive and in mum's case...her nagging me for placing dad in a care home and selling the house but bizarrely dad doesn't have dementia in any of my dreams! None of my dreams are logical and I just accept it.
 
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Kikki21

Registered User
Feb 27, 2016
2,268
0
East Midlands
I think grief & how we deal with it is different for everyone & time is a great healer. It is now 19 years since my dad passed away. He had Alzheimer’s although when he died he also had Non Hodgkins Lymphoma as well. I can remember lots about the day he actually died but can’t remember too much about the funeral itself other than the fact that I was ill with a double chest infection!
I can’t remember much else other than one of my half sisters flew over from Australia the day after he died.
Maybe it was just all too awful & I was ill but it is probably better that way & now as time has gone on then you know the memories are there but they don’t feel as traumatic.
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
I'm back from my holiday and I think it did me more good to be away over the 'festive' season than stay at home. I certainly feel as if the holiday has separated me from the dementia experience and mum's death just a little bit more. Today I have dismantled the photo display board I put together for mum's funeral, so I guess that's some progress too. As I slotted photos back into albums, it took me through mum's life, through the photos, and there is a lot to be happy and grateful for.

But, I am finding it very hard to motivate myself to do something, so have decided to just go with the flow and if it means a bit of rest and relaxation at home, then so be it!

The experience with mum and dementia over three years was definitely much harder and yes, traumatic, than the experience with dad being diagnosed with cancer and dying within months. These are my only two experiences that I have of dealing with death. I think overall I am probably doing OK, just need time to process everything that happened and come to terms with it, and then hopefully move on a bit further.

Good to know that others have been through similar. I think I will hang around TP a bit longer!
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
You’re certainly making sense and in my experience TP is still the place to come.

I’ve found that in the two and a half years since my husband died that kind of flashback has lessened. I still can visualise his last week in hospital but it’s no longer with me all the time.

Grief is different for everyone and takes its own time. I’m glad you’ve had a good time with friends. Please keep posting on TP. You’ll continue to get lots of support here.

I feel similar to Izzy the flashback still come but less frequently less vividly. I do feel my husband's pain and suffering strongly at times. especially this year when in the same hospitals he was in and dementia patients there when I was in.

Time is a healer but it does take time ,I hope knowing that you are not alone does help. Perhaps it is something we have to go through to put it behind us and now we have time to digest what at the time we were too deeply involved in day to day to.

Love Loo xxx
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
Hi @Marnie63 I'm no psychologist, but I suspect that what's happening is that now your brain/subconscious has the time to process all that happened, and all that your mum experienced, and is doing so. While you were in the thick of caring for her, and it was all happening, you needed to concentrate on getting both of you through each day. I think in those situations, our brains kind of look at what's happening, and say "ok. deal with it later." and file it away until we have the time to work through it. So, yes, I suspect your thoughts about a form of PTSD would be fairly accurate.
te.
Give yourself time. Four months is nothing after all your mum and you went through. I would say, with each memory that comes up, just let it come, and then add "and m have beenum is now free of all her suffering." with a smile. I know it will be hard, but it might help to put each traumatic memory "to bed".

I posted here earlier but have been re-reading the posts and I very much identify with what LadyA wrote. There is the grief after the death but for me there was something else and I definitely felt it was a form of PTSD. I was not dwelling on those bad times. It was definitely separate from the grief. I think one difference is that grief can always be with you a part of the loss, we have to learn to live with, that is not to say you will never experience happiness and enjoyment in life again, but the trauma part does gradually lessen in time. It is something we have to work through to come out the other end.

It did help me to think that my husband was now out of the dementia suffering and at peace - free.

I also found looking at photos and recalling life as it was before dementia . Became a great comfort. While Henry was alive I avoided photos from the past because I would compare how he was before this awful condition turned our life upside down, but gradually our photos awakened happier times and the fact that dementia cannot take away the life we had together.

It does take time and as LadyA said, 4 months is no time at all so do give yourself time. it will get easier.

Thoughts and love
Loo xxx
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
I've been feeling a bit 'better' these past few days. I have been out for a few walks and I can confirm that walking is an excellent mood lifter! I belong to a walking group and there is usually a good walk on each Sunday, but because some recent ones have been a long drive away, or the weather has been bad, I hadn't been out so much recently. I went for a wander locally on my own last week, and then this week was out with a friend, wandering over fields, looking at huge vistas and just generally enjoying being outdoors. It was cold, but it was still good to be outside! So more walking is on the agenda now and I will be out on Sunday.

I haven't been to mum and dad's grave recently (again because it's far away and the weather had been grim), but a friend who lives nearby sends me photos regularly when she's up at the cemetery, and that has helped me. I will go up when there's a decent day and tidy up. I found it helped greatly after my father passed to visit his grave, but at the time we still lived locally.

I'm beginning to feel a little less 'hopeless' about the future, which is comforting. I suspect once we get into Spring and I can add gardening to the agenda, things will improve even more.

The images of mum's awful last few days are not as painful right now, so again I hope that is 'progress' of some sort. And I haven't felt the need to see the counsellor, yet!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,049
0
Kent
I know we all think `time is a great healer` is a cliche but there`s a lot of truth in it.

It doesn`t mean everyone needs the same time to heal or that healing will be 100%.

I doubt anyone will ever be unaffected by the loss of someone who remains dearly loved long after they have died but eventually the pain eases and good memories may replace bad ones.

It helps if we give ourselves time without any expectations.

It`s good to hear you are beginning to feel a little bit better @Marnie63. You are moving in the right direction.
 

Ladysuisei6

New member
Apr 12, 2022
4
0
It`s strange.

I think I`m doing well, five years after loss but certain things tell me I've blanked out some of the worst times.

I could not remember the date of my husband`s funeral. I have no recollection of his final day other than my son and I going home for a bath and change of clothes once the syringe driver was in place. The days leading to his death are a blur.

I`m OK with this. It was obviously too painful and this seems to be my strategy for coping.

My heart goes out to those who have flashbacks and I really do hope they fade in time.
Goodness - I came on here out of desperation because my mum passed away on 21st January 2021 ( in lock down) and up until the interment of mum's ashes in the August, I completely blanked out everything that had happened. I didn't realise mum had gone for ever if this makes sense. Following the interment, I found myself so traumatised by the pile of ash ( my mum) that I was thrown into a mental health crisis and now my anxiety is so severe I avoid almost everything. The flashback to mum's funeral is happening at the moment - I can't consciously remember any of it at the time. I'm already diagnosed with pretty complex mental illness and I am struggling so much getting myself understood by the professionals who " help" me. I know I need to speak with someone on a 1 to 1 basis who can help me process my mental turmoil. I would give anything to hug my mummy once more but now the reality has set in ( albeit with a delay) I'm a mess. Sometimes I feel I can't go on which I know my mum would really not want. We cared for her at home for nearly 14 years, but due to covid she passed away in hospital. Alone. All our carefully planned end of life care went out the window and I don't know how to get better.
 

Ladysuisei6

New member
Apr 12, 2022
4
0
I know we all think `time is a great healer` is a cliche but there`s a lot of truth in it.

It doesn`t mean everyone needs the same time to heal or that healing will be 100%.

I doubt anyone will ever be unaffected by the loss of someone who remains dearly loved long after they have died but eventually the pain eases and good memories may replace bad ones.

It helps if we give ourselves time without any expectations.

It`s good to hear you are beginning to feel a little bit better @Marnie63. You are moving in the right direction.
That's reassurance for me because at the moment I am suffering the most horrendous flash backs to various horrors which we as a family experienced for around 15 years. At the moment, the tunes from mum's funeral randomly pop into my head and go round and round on a loop. I consciously cannot remember mum's funeral and this is mentally disturbing. I will continue with my daily meditation and hope that, eventually the horror will fade and be replaced by nice memories . X