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

[spandit]

... it's probably something I will never 'get over'.

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.

You don't "get over" the death of a loved one, you just realise over time that the thoughts of them and the grief occupies less and less of your waking day. I lost my mother 13 years ago, to cancer, and it took quite a while before I wasn't thinking about her all the time. I can look back with fondness now - it's bittersweet, of course (she never met the grandchild she knew was on the way, who turns 12 next week, although she hasn't had to deal with her husband becoming disabled) but trite as it sounds, time heals all wounds.

On the counselling issue, the lady you spoke to doesn't sound great. I've had various bits of counselling over the years and one of them was awful - made me feel even worse. I complained about her and hope that she changed her approach but the rest of it I've found quite useful. It gave me an understanding of why some people hold onto a faith - having someone impartial to talk to allows you to make up your own answers. Whether that be a god or a human (or an animal or a tree!) it's about coming round to the fact that you can't change the past but feeling awful about it is perfectly normal. There's no timetable for grief.

 

[Marcelle123]

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!

I can really identify with what you say here. The experience of my mother getting dementia & my having to take the decision to find a care home for her, then visit her several times a week & finally see her through her dying - it's not something I feel I've got over yet, even 3 and a half years later.

I just came back on here after several months absence, and it is really the only place that I can say how I feel and find that other people understand. It is also good to read how other people are getting along. I remember how supportive other members were to me when Mum was in hospital and then back at the care home. I hope you make better progress on your journey out of painful memories in the next few months.

 

[Georgina63]

Hi @Marnie63,
I haven’t been on here for a while! I hope you are doing ok. I don‘t imagine there are any rules about dealing with the grief and trauma of dealing with dementia and the loss of a parent and how long it takes to come to terms with all of that. Strange days. Take care. Gx

 

[Big Yellow Taxi]

Thank you for your post. Tonight is my first visit back on here since we lost mum at the start of the year. Your post resonated with me so much. Thank you for being so open and honest and saying that its not always happy hand holding and reminiscing In the final days/weeks/months. Dementia doesn’t always allow that. I’m angry, I’m sad, I’m empty, I’m numb. I feel guilty that I don’t feel anything for my wonderful mum. I hope time will heal. I send you love and positive thoughts and hope your journey continues on a healing & positive path Xx

 

[Violet Jane]

My mother’s dementia and death have scarred me. I feel that compared with many others on this forum I got off relatively lightly. My mother was diagnosed at 80 (although she was showing symptoms for a few years before that), so not particularly young; her behaviour was not extreme and we had no trouble getting her to accept carers and to go into a home. I was not providing personal care and there were no real family disagreements about what should happen with my mother. Despite all these ‘positives’, I found my mother’s illness deeply distressing and I’ve never really come to terms with it although she died over four years ago. It was quite simply devastating to witness her slow decline into a husk of the woman she once was. She feared developing dementia as her mother had had it, and I fear developing it too. Her illness took a big chunk of my middle years and, looking back, I think that I was suffering from low level depression during that time. It wasn’t so much the practical things that weighed me down but the awful visits that I had to steel myself to make and the emotional space that the illness took up. I had a constant feeling of dread, and I also felt revulsion at what my mother had become, which is a very difficult emotion to feel in relation to one’s own parent who is ill. My father had died after a short illness a few years before my mother’s diagnosis and, although I was greatly upset by his death, I was able to come to terms with it. Yes, he had died relatively young for these days (at 74) but he had not suffered and he had had a dignified life to the end.

 

[MaNaAk]

Dear @Marnie63,

If you read a couple of my threads in the Tea Room you'll know I'm going through the same thing. Also like @spandit this time last year I was having therapy for mild/moderate anxiety/depression.

Hugs

MaNaAk

 

[Jaded'n'faded]

My mother’s dementia and death have scarred me. I feel that compared with many others on this forum I got off relatively lightly. My mother was diagnosed at 80 (although she was showing symptoms for a few years before that), so not particularly young; her behaviour was not extreme and we had no trouble getting her to accept carers and to go into a home. I was not providing personal care and there were no real family disagreements about what should happen with my mother. Despite all these ‘positives’, I found my mother’s illness deeply distressing and I’ve never really come to terms with it although she died over four years ago. It was quite simply devastating to witness her slow decline into a husk of the woman she once was. She feared developing dementia as her mother had had it, and I fear developing it too. Her illness took a big chunk of my middle years and, looking back, I think that I was suffering from low level depression during that time. It wasn’t so much the practical things that weighed me down but the awful visits that I had to steel myself to make and the emotional space that the illness took up. I had a constant feeling of dread, and I also felt revulsion at what my mother had become, which is a very difficult emotion to feel in relation to one’s own parent who is ill. My father had died after a short illness a few years before my mother’s diagnosis and, although I was greatly upset by his death, I was able to come to terms with it. Yes, he had died relatively young for these days (at 74) but he had not suffered and he had had a dignified life to the end.

Hello @Violet Jane my story is very, very close to your experience and it has left me feeling the same way. Maybe I'm just not a very stoical person but I found the CH visits scary and upsetting. I'd love to say I was able to put on a brave face, smile and say hello to the other residents or engage with them and my mother but I just couldn't. I know what you mean about revulsion towards your own parent. It's awful, isn't it, but true.

I wasn't close to my mother and we were never a lovey/huggy family. She did forget who I was to her though she recognised me as 'someone she knew' till the last couple of days. But she also used me as a punchbag (not physically!) to rant about everything she was unhappy with and to blame me for it all.

On the occasions I was called upon to calm her down or once, to help change her pads, I recoiled. No one has trained me to deal with people who have brain disorders. She might be my mother but that doesn't give me special powers over her - she never took any notice of me. I have never seen my mother naked and didn't ever want to, let alone wipe her bum! Sorry? Yes, I'm sorry we didn't have a better relationship but it was too late by then. She was a total stranger to me - I just didn't recognise this crazy, unhappy frail and shrunken person with the feral eyes as my mother.

Mum's mum had it too and though my father died (of other things) at 70, I'm pretty sure he was going the same way. So I'm also half-resigned to dementia coming my way. Going by my mum, I reckon I've got about 15 years...

I also feel I have post traumatic carer's syndrome.

 

[spandit]

Unfortunately, my father doesn't time his bowel movements with the times the carers are there and despite it being disgusting, I have to clean him up. His pads stink, his breath stinks, it's foul but despite me detesting him at times, I can't bring myself to abandon him to squalor. I've had no training and am not a naturally caring person - I hate the role that's been thrust upon me.

 

[Marnie63]

Hi @Marnie63,
I haven’t been on here for a while! I hope you are doing ok. I don‘t imagine there are any rules about dealing with the grief and trauma of dealing with dementia and the loss of a parent and how long it takes to come to terms with all of that. Strange days. Take care. Gx

Hi @Georgina63,

Good to hear from you. How are things with your folks? It's been along time since I've seen a post from you.

 

[Marnie63]

I think, after three years, I am finally starting to allow myself to enjoy life again. I've really got back into serious mountain walking and have been on a few trips around the UK taking on new challenges. I've always enjoyed being outdoors and close to nature and I often mull things over, as you do when pushing yourself up a mountain (!), and somehow being out there in that wide landscape has helped give me some sense of peace, at very long last.

One thing I've noticed recently is that I am less patient with people. I think maybe that stems from having to put up with 'those who don't understand' making comments that irk me, but I have learned to just not say anything and let it pass (unless it's completely outrageous, in which case I will speak up!). I also stand very little nonsense these days. Maybe going through something so traumtic just helps to focus you more clearly and what you want out of life. Or maybe it's just what happens as you get older!!

I do have to watch 'stress' though, and this 'getting cross' with people. I am organising a walking weekend with a group of friends next year and at one point was getting really bogged down with the accommodation booking and nearly sent an email to everyone saying I didn't want to do it any more. I left it a few days, realised this was a bit dramatic, and carried on. All sorted now, I hope. Things that are difficult or uncomfortable seem to push me to 'stress' easily, so I will have to avoid those as far as I can.

I had a long chat with a lady on a walk recently who lost her husband many years ago. He died quite young in his middle years. We had a good old discussion about the injustices of life. I think it probably helped both of us. I have resisted approaching a counsellor. I think conversations with close friends and even the odd stranger out on a long walk will be of more value to me.

Hang on in there if anyone else is feeling the same. Hopefully we'll all be able to get some peace from the horrors of dementia in time.

 

[Georgina63]

Hi @Georgina63,

Good to hear from you. How are things with your folks? It's been along time since I've seen a post from you.

Hi @Marnie63, some interesting times, not least through Covid and Lockdown. My Mum passed away in September (not Covid), but my Dad fares well albeit in his diminished state. I'm very glad to hear you are making progress and I empathise with so many of the comments on this thread. A lot of the last 10 years, dealing with both parents has been overwhelming. I'm sad and still feel troubled (if that's the right word) about my Mum. I can't currently easily remember back to the days before dementia took hold, though I hope that will come in time. I will drop you a message shortly with a little more Gxx

 

[Mydarlingdaughter]

I do relate to what you are saying Marnie 63. I lost Mum in the summer and it was a very difficult few weeks for her before she died. I am not going in to the details. She had been unwell maybe 15 years or so but got the actual diagnosis after a hospital admission in 2014. The nurse said to me, your mum has dementia and will need residential care.
Mum only spent the last 2 and a half years of her life in a Care home, again after another hospital admission. I was the only family member directly involved during the last 11 years of her life.
The stress was overwhelming at times. I had constant nagging anxiety.
However in the last couple of weeks of Mum's life that just went away. I didnt even notice until one day I realised it wasnt there. My emotions were just so differnt. It was so focused on expression of love and gratitude to her. The funeral was a very small affair due to covid plus a lack of people to invite. But it was a good thing to do. My feelings now are Sadness. I have put her wedding photo up and a photo of her when she was about 30 years old. I do actually talk to her. I just say things like that I miss her. Nothing too wierd. I think its normal to feel intense sadness. There is difference between that sadness that just wells up. and when you are "ruminating"on it.

 

[Lindy50]

Hi all
What a wonderful thread. I so empathise and identify with many of the posts. I haven’t been on this forum for a couple of years but somehow felt drawn to it today. I don’t think I’ll ever forget the wonderful support I felt on here during mum‘s illness and my years as her main carer.
Mum passed away relatively peacefully on 12 November 2019. I had an overwhelming feeling that she had gone to a better place, where she stood a chance of being content and would see family and friends who had gone before her - and my dad, too, who in life she seemed to have long forgotten. I was lucky in that my two daughters and I were able to sit with her for hours in the week before she died, chatting to each other. She never responded, but we felt we were together. Then on the evening she passed, I was able to hold her hand as I had the strong feeling that she crossed a bridge into another life, and that she felt no need to look back.
I’m not an especially religious person, but being with mum at the end, and feeling that I got half way across that bridge, then was able to willingly let her go, helped me tremendously. The carers too were wonderful. One came in and knelt and prayed for her, another opened the window to let her soul free. Then we all hugged - I felt they cared about mum too.
Of course within a few months of mum’s passing, we were all in lockdown. And given that she had cried out for me to help her every day for years, I am so relieved that she did not have to endure that isolation.
I retain a link with mum every day, when I use the coffee cups that she passed on to me, when I tend my garden, when I talk to my daughters…..and in my role as ‘nanny’ to three wonderful grandchildren. My mum was known as nanny, and I chose to be called the same in her honour, as I really felt (and feel) that no one could be a better grandmother than she was. I was very, very lucky to have such great parents.
My very best wishes and hugs to everyone ?
Lindy xx

 

[Arty-girl]

Hi @Marnie63 Your opening post so resonates with me. I lost my mum only 6 months ago and although I 'get through' most days, I can see from all the comments that it's going to, perhaps, take me quite a bit longer. I can totally understand that it may be PTSD but I really don't want to see a GP about it. The default response is to put people on antidepressants which I've found in the past sometimes make the dark moods worse.

I spend my time pottering about the house (I live on my own and am unemplayed at the moment) and I am really trying to get back into painting/drawing but the apathy wins too often at the moment. I'll will get there eventually. As others often mention, it is very helpful to drop-in now and again when I'm feeling low, but not too often as it can trigger a few flashbacks.

I'm in awe, actually, as so many of you have cared for Loved Ones for as long as 15 years in some cases. I only did it for 16 months and now feel foggy and wonder if, or when, I'll feel like rejoining the human race.

@Marnie63 I know it's quite some time since your opening post but I sincerely hope you are finding some peace in your life now although there's probably still some time to go.

 

[Banjomansmate]

I find watching art demonstrations on YouTube can be a spur to creativity even if it is just playing around with a different medium.

 

[Peace lily]

Hi everyone, my dad recently died on 2nd January. He was 88 old. We have arranged a direct cremation, with no one present. My dad always said that he didn't want any fuss and just to 'throw him in the dustbin.' If it had been my decision, I would have had immediate family present, but my mum and brother felt that this is what my dad would have wanted. Does this seem cold and heartless, like his life meant nothing. I feel we are letting him down? We are going to have a celebratory meal and later a memorial of some sort x

 

[lemonbalm]

Hello @Peace lily

I’m sorry you’ve lost your Dad but you are doing what he asked and not letting him down at all. I lost mum in September and we had a natural burial, no religion, no celebrant. She didn’t like a fuss either.

We did consider a direct cremation for my Dad when he died a few years ago but opted for a natural burial for him too. I had thought that I would sit in the crematorium garden just to say goodbye if we’d decided on the direct cremation. You could perhaps do that if it would make you feel better about it.

We were there for them when they were alive. That’s the really important thing I think. ?

 

[Bunpoots]

Hi @Peace lily

I’m sorry you’ve lost your dad. Please accept my condolences.

I’ve told my kids I don’t care what happens to my body when I’m not in it anymore. In fact I may have used the words “put me in the dustbin”. I believe the funeral is for those left behind, not the departed, so you should do what feels right for you.

I remember a Klingon belief (sorry for the Star Trek reference) about life after death “The body is an empty vessel, treat it as such.” If your dad felt that way you’ve done him no disservice. If there is an afterlife I doubt very much that human designed ceremonies will make a difference to what happens to the soul.

 

[Georgina63]

Hi everyone, my dad recently died on 2nd January. He was 88 old. We have arranged a direct cremation, with no one present. My dad always said that he didn't want any fuss and just to 'throw him in the dustbin.' If it had been my decision, I would have had immediate family present, but my mum and brother felt that this is what my dad would have wanted. Does this seem cold and heartless, like his life meant nothing. I feel we are letting him down? We are going to have a celebratory meal and later a memorial of some sort x

Hi @Peace lily sorry to hear about your Dad. It doesn’t seem cold and heartless if it is respecting your Dad’s wishes. The idea of a celebratory meal and memorial sounds good. My Mum died last September and after 10 years of her time with dementia I was, and still am, finding it difficult to remember Mum before that time and have so many conflicting feelings associated with more recent times (dementia, care homes, end of life etc). Some of it was quite traumatising. It did help that we shared some lovely memories at the funeral service which I hope I can process and reconnect with at some point . I’ve read with interest comments on threads about how people feel after the death, in this case, of a parent. The grief for me has come in waves, or should I say mini tsunamis. I think the important thing is to find a way that you feel celebrates your Dad‘s life. Take Care, Georgina x

 

[jennifer1967]

my husband has chosen a direct cremation himself and its paid for. he didnt want a fuss or people crying over him. you can share memories and celebrate his life any where, not just a church or chapel. we will have a family meal and share memories there and celebrate his life. he wants his ashes to be scattered in devon where he grew up so we can celebrate and share stories then as well. he will be remembered every day where ever we are. my husband is still alive but hes already planned it. its not cold or unfeeling as you remember him every where.
theres a poem i like that says do not stand at my grave and weep, im not there, i do not sleep by mary elizabeth fry