Still struggling

[AnnaKarsten]

Hello everyone

Long time lurker/reader but only just finding the courage to post. I am four years in after losing my husband to Parkinson's dementia. The last year of his life was absolutely awful for both of us and though I think I am mainly coping well with life without him, I still struggle with those memories. We had twenty two years together, the majority of which was great - he was a kind, good and lovely man, he shouldn't have had to end his life that way, but he did. I still find that the memories of that last year completely erase the twenty one good years that went before. Will this ever change? Looking for someone to tell me that it will get better.

 

[karaokePete]

Hello and welcome @AnnaKarsten. Please accept my condolences for your loss.

I haven't yet reached your stage so I can't speak from experience. I do know that people have posted to the effect that the good memories do overcome the bad eventually so I hope that happens with you.

One thing for sure is that you are in the right place for understanding from people who have a shared experience so do keep posting for support or just to vent any feelings.

I wish you strength.

 

[AnnaKarsten]

Hello and welcome @AnnaKarsten. Please accept my condolences for your loss.

I haven't yet reached your stage so I can't speak from experience. I do know that people have posted to the effect that the good memories do overcome the bad eventually so I hope that happens with you.

One thing for sure is that you are in the right place for understanding from people who have a shared experience so do keep posting for support or just to vent any feelings.

I wish you strength.

 

[AnnaKarsten]

Thank you Karaoke Pete. I wasn't sure that anyone would be here at this time of night to reply, but was feeling so low that I thought I would try! I went to my husband's grave today, to tidy it, after nearly two months of not being able to go. First time I've used the car in ages! I've thought from time to time that maybe I would need counselling for this, but feel that I'm coping well, except occasionally I don't. I spoke with a good friend not that long ago, told her about one incident during his last year - she looked appalled and I realised that the only people that probably would understand are those who have been through it themselves. Like most people, I used to think that dementia was just about poor memory, but found on my "journey" that wasn't the case at all and that it was so much more. Unless you've been a carer 24/7 for a loved one with dementia, I really don't think you can understand just how hard it is. I can't share these memories with my family, they would worry about me. I can't share them with my husband's family because I don't want them to feel the pain I do about how dementia changed him.

Anna

 

[Nigel_2172]

I know just what you mean about not being able to share things with the family. I lost my wife last November at the age of 65 after she had spent 18 months in a nursing home. The family saw very little of her in her last year and, as you say, without having lived with this people just don't have any idea of the stress and loneliness and certainly have little understanding of the daily worry, stress and complete exhaustion. My wife and I had only met four years before she was diagnosed. The following eight years were a complete rollercoaster but, strangely, my most frequent memories are of the four wonderful years we had rather than the more recent and much longer period of decline. I don't know whether I deliberately suppress the bad times - I suppose I must. I hope that you will be able to reach a time when the memories ease for you. Caring for someone through dementia is such a traumatic experience and it affects us all in different ways. Please look after yourself as best you can.

 

[AnnaKarsten]

Thank you Nigel. I'm so sorry for your loss, it is so recent that it must still be incredibly difficult to come to terms with. At least I had a couple of decades with my husband, you had so little time together - I'm glad that your memories are mostly happy ones, that must be some sort of comfort? I'm not sure that I believe that suppressing bad memories is necessarily a bad thing, if the good ones come to mind most often surely that is more healthy and better for you?

I (stupidly?) watched a video on BBC News website last night about dementia carers during lockdown and it brought me to tears seeing what they were dealing with and remembering that my experiences were particularly similar to one of the women featured. I guess all we can do is try to get by day to day. It is what it is and we have to get on with it.

Wishing you strength too in dealing with your loss.

Anna

 

[Izzy]

Hi @AnnaKarsten and welcome to the forum.

I’m glad you’ve found the forum and that you have decided to post. I hope sharing your thoughts and feelings here will help you - even just a little bit. There will always be someone here to listen to you and to offer support.

I found this video clip useful - especially the diagram describing grief contained within it.

 

[Grannie G]

Will this ever change? Looking for someone to tell me that it will get better.

It will get better but it does take time. If you allow yourself that time, without expectations, one day you will suddenly realise it`s not quite as bad as it was.

 

[AliceA]

Hi @AnnaKarsten and welcome to the forum.

I’m glad you’ve found the forum and that you have decided to post. I hope sharing your thoughts and feelings here will help you - even just a little bit. There will always be someone here to listen to you and to offer support.

I found this video clip useful - especially the diagram describing grief contained within it.

Thank you Izzy, you are a star for putting this on. Thank you, x

 

[AliceA]

Dear Anna, I am so sorry for how you are feeling. There is such good advice on here,
We all share in the elements of grief, but we all have our individual triggers,
It is difficult to talk to family as they are grieving too with their own triggers.
Losing a life partner is different from other losses too. I am not saying the pain is more but it has a different impact.
Do find someone who will listen and keep on listening. Our best advice is within, we just need to allow it to surface, so a good listener is a sounding board.
I am sure you good memories will return, the little film that Izzy put on is very wise.
Be gentle on yourself. X

 

[Izzy]

Thank you Izzy, you are a star for putting this on. Thank you, x

I think it’s the best diagram description I’ve ever seen. I hope it's of some help to others too.

 

[AnnaKarsten]

Hi @AnnaKarsten and welcome to the forum.

I’m glad you’ve found the forum and that you have decided to post. I hope sharing your thoughts and feelings here will help you - even just a little bit. There will always be someone here to listen to you and to offer support.

I found this video clip useful - especially the diagram describing grief contained within it.

Thank you Izzy. I had seen this before but it is a timely reminder. I thought I was doing so well with my grief, but it still comes back to bite me sometimes. I am a rational person who, I think, has good insight into what makes me tick, but even so it just floors me when it returns. I don't tend to think of grief as a rollercoaster, more like snakes and ladders. You start to think things are improving, that you're at the top of a ladder, but instead you hit the head of a snake and slide down again, sometimes further down than you were before.

Anna

 

[AnnaKarsten]

Dear Anna, I am so sorry for how you are feeling. There is such good advice on here,
We all share in the elements of grief, but we all have our individual triggers,
It is difficult to talk to family as they are grieving too with their own triggers.
Losing a life partner is different from other losses too. I am not saying the pain is more but it has a different impact.
Do find someone who will listen and keep on listening. Our best advice is within, we just need to allow it to surface, so a good listener is a sounding board.
I am sure you good memories will return, the little film that Izzy put on is very wise.
Be gentle on yourself. X

Thank you Alice. Yes, I found TP very helpful in the past - I only found it very late into my husband's illness, wish I'd found it earlier! I tell myself (and others) that I'm fine and to be honest I do feel a lot better than I did, mostly. There are just so many layers to this - guilt for one thing, that I couldn't support my husband's children in their grief because I only had the strength to handle mine at the time. That is better now and they all seem to be fine, but how would I know? I'm so lucky that I have had the support of really good friends, but obviously at the moment I can't see them, and I just can't bring myself to message them and say that I am having a low moment, it's not the same as being with them.

I agree, the pain is no less if it isn't a spouse (my stepdaughter was devastated by his illness and death) but he was so fundamental to my everyday life, he was my life. The grief at his loss I now allow to wash over me when it comes, knowing that it will pass, and it is definitely shorter and less intense than it was - I've learned that much so far. As I said in my original post, it's the memories of his last year. I find it so hard to remember the man he was before that and the memories sometimes surface when I least expect them, so take me slightly by surprise.

Anna

 

[canary]

If, and only if, you would find it helpful to work through those memories, you could always post them on here. If you posted in the "difficult feelings" section it would only be visible to members and you might find it a safe space to be able tell people who understand about these things.

But please dont feel pressured - Im only offering it as a suggestion as a way of releasing any bottled up feelings and perhaps being able to work through them.
xxx

 

[AnnaKarsten]

It will get better but it does take time. If you allow yourself that time, without expectations, one day you will suddenly realise it`s not quite as bad as it was.

Thank you Grannie G. Yes, I agree with all you have said, I know that you are right, but from time to time it just doesn't feel like it. Last year was the first Christmas and New Year that I didn't have a whole month or so of feeling low in the run up to it and after, I think my brain's feelgood chemicals finally kicked in again and I actually enjoyed that period for the first time in years. Then we were approaching the anniversary of his death (which was only a few days after his birthday), and all of a sudden, the low feeling hit. I woke one morning and the first things I thought of were his last months. I'm not a "why me?" person, as the only answer to that is "why not?", life is too random to take it personally. I just want to be able to remember my husband as the lovely person he was, rather than the agitated, hostile stranger that he became.

Anna

 

[AnnaKarsten]

If, and only if, you would find it helpful to work through those memories, you could always post them on here. If you posted in the "difficult feelings" section it would only be visible to members and you might find it a safe space to be able tell people who understand about these things.

But please dont feel pressured - Im only offering it as a suggestion as a way of releasing any bottled up feelings and perhaps being able to work through them.
xxx

Thank you Canary, I didn't know I could do that. I'm not sure I'd know where to start, which aspects of those memories I am finding so hard to handle sometimes, but I definitely feel I need to let them go.

Anna

 

[canary]

Then we were approaching the anniversary of his death (which was only a few days after his birthday), and all of a sudden, the low feeling hit.

Anniversaries are always hard. The grief monster lurks in the shadows ready to jump out and give you a slap.
((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))

 

[Grannie G]

I'm not sure I'd know where to start

You start with those feelings as they come. There are seen and unseen triggers. The seen triggers are anniversaries, family occasions, memorable music etc. The unseen are unknown, they come without warning, no rhyme or reason. These are the ones we can only `go with the flow`.

 

[AnnaKarsten]

You start with those feelings as they come. There are seen and unseen triggers. The seen triggers are anniversaries, family occasions, memorable music etc. The unseen are unknown, they come without warning, no rhyme or reason. These are the ones we can only `go with the flow`.

Oh yes, re the odd triggers - I was driving along one time, a good two years or so after he died, and an ambulance passed me, siren going. All of a sudden it took me back to the frequent trips to hospital in that last year, after falls or because he had an infection. Up until that moment I'd been singing along with the car radio, quite happy. I've been told that caring for a loved one with dementia can cause some form of PTSD, not surprising I guess with what we go through during the caring.

Anna

 

[AliceA]

I think it’s the best diagram description I’ve ever seen. I hope it's of some help to others too.

So do I, grief work was part of my studies but this explains it so well, as far as it is ever truly explainable, we are all so different. Saying that it is truly helpful. X