Trying to move on, but struggling ...

[Anna T]

@lis66 I’m also on this journey with my Mum.
I’m absolutely broken to my core to, having to bear witness to such unbelievable suffering and cruelty...I constantly ask why???
I anticipate the end and wonder if I will ever be able to “move on” when I am already tormented by my mums suffering.
I hate dementia...
I don’t think we will ever forget rather we begin to process everything that our loved ones have endured and hopefully in time we begin step by step to live again?

 

[Sam Luvit]

I think it just made me completely re-evaluate my life. I’ve never been money orientated, but I did have a “good job” and I definately worked on progressing my career, although I never defined myself by my job

Now I’m very much working just enough to cover the bills, all I actually want is time. Time to visit with friends. Time to sit and talk. Time to just think.

I’m one of those who didn’t have a great relationship with my mum, but I’d worked hard to make it better and it was much better for about ten years (ish). Then dementia took that away and I had the last years full of conflict and pain. I’ve learnt a lot about myself, but I’ve also come to accept that my mum was a product of her upbringing and the social pressures of her time.

It’s the lost years, the lost opportunities, the lost chances to make things better, to heal the earlier years. I can never forget the pain of my mum telling me she didn’t want me, or that she never hugged us as children, but I sort of get it ... she wasn’t maternal, but did her best

Dementia is cruel. It robs one person of their memories and taints the memories of the other. I try to think of taking mum on holiday, seeing her laugh, getting her in the pool. Dancing her along the corridor, while singing “lets go for a little walk” and how she laughed at me being silly with the rolator on the seafront

Memories of her crying in pain, the district nurse running to the pharmacy for morphine her GP had failed to prescribe are the memories I hide from. Those I can’t face.

I’ve found I have massive empathy for dementia sufferers, I won’t lie to them. I refuse to tell them it will all be ok. But I do hold hands, talk and tease them, make them laugh. I let them cry, but I hold their hands while they do. It’s an unbelievably cruel disease, with moments of crystal clarity that floors me, but I hope my hand holding and listening is helping at least one person.

I never focused on what I wouId do “after”, as that was like wishing mum wouId die. I knew it wouId come, but I couldn’t think about it. I guess everyone finds a different was to get through it, a different way of coping. Personally, I switched off from the outside world. I barely saw anyone, my brother and my neighbour J, but others I avoided. I could go for for or five days without talking to anyone but Pooch

You will find your path @Marnie63, accept whatever help there is in the “real world”, but we are here too

 

[Marnie63]

I suspect CRUSE is not going to work for me - someone was supposed to call me at 9 am. Guess what?! Still waiting ….

I think I'll just go and see the GP.

 

[Marnie63]

Well I've made contact with CRUSE at last and will hopefully be attending an event on …… 30th November!! It sounds like it's all run by volunteers and there aren't enough of them. The lady who eventually called me seemed very nice. But, that's all I got - an invite to this event at the end of November. Maybe you have to go to one of those to find out more? I will genuinely try to go, if I can.

I have been feeling a bit better, I think the anniversary and working on the wording for the gravestone were affecting me. Once I have done the gravestone and paid the painfully expensive sum to have it refurbed and the inscription re-done, I might feel better still.

 

[Pete1]

It is so difficult, I find just when I seem to be putting my best foot forward a black cloud descends. I was helping and advising friend this week whose Mum is in middle stages of dementia, and they are dealing with the issues of sudden abusiveness and 'sun downing' where the PWD doesn't recognise their surroundings - all familiar to me. The next day (yesterday) I felt absolutely desolate as it re-ignited all of those old memories, many of which I had somehow pushed into the attic of my mind. I have had counselling which helped, but there are always triggers and milestones that bring back those sometimes terrible and sad times. I've concluded that it takes time, a lot of time.

 

[Grannie G]

Yes it happens, @Pete1.

You can`t fail to be affected by other people`s experiences when they are so close to home.

Life after the loss of someone with dementia has been compared to Post Traumatic Stress Disorder [ PTSD ]

It will get easier but cliche or not it takes time and time is as long as a piece of string and according to the individual.

 

[veronicamary]

I lost my husband of nearly sixty years to dementia and Parkinson's disease just three months ago and everyone thinks I am doing so well because I smile and laugh, but they don't see the sudden meltdowns at home when I am alone. I feel so guilty that I left him alone sometimes when I couldn't bear it anymore and often snapped at him.
Does this guilt ever go away?
We managed to keep him at home, because after eleven years the end was very sudden and although everyone we met was simply lovely , there was no joining up of the services needed at the end of life. As a result he and we, the family were struggling until an hour before he died when he finally had his first sedation.
I have been offered counselling , but cannot travel far because just before he died I had my hip replaced and am now suffering a type of pain syndrome, which makes it difficult to go anywhere. I spoke to a counselor on the phone, but she couldn't offer much help locally so I said that I was alright.
I feel so lost and like others feel I have no purpose, but I am going with a group of my choir ladies to sing to old people who are lonely and to get them to laugh and mix. It is hard, but if I can make someone smile and join in ,it is so worthwhile.

 

[Marcelle123]

I lost my husband of nearly sixty years to dementia and Parkinson's disease just three months ago and everyone thinks I am doing so well because I smile and laugh, but they don't see the sudden meltdowns at home when I am alone. I feel so guilty that I left him alone sometimes when I couldn't bear it anymore and often snapped at him.
Does this guilt ever go away?
We managed to keep him at home, because after eleven years the end was very sudden and although everyone we met was simply lovely , there was no joining up of the services needed at the end of life. As a result he and we, the family were struggling until an hour before he died when he finally had his first sedation.
I have been offered counselling , but cannot travel far because just before he died I had my hip replaced and am now suffering a type of pain syndrome, which makes it difficult to go anywhere. I spoke to a counselor on the phone, but she couldn't offer much help locally so I said that I was alright.
I feel so lost and like others feel I have no purpose, but I am going with a group of my choir ladies to sing to old people who are lonely and to get them to laugh and mix. It is hard, but if I can make someone smile and join in ,it is so worthwhile.

My heart goes out to you.

It doesn't sound as if you need to feel guilty - you loved your husband, you coped as well as you could, and you are only human. But of course reason has nothing to do with it.
I hope your feeling of guilt will fade. Please be kind to yourself.

Wishing you all the best on your choir outing, which sounds a lovely idea, and I do hope that it helps. xx

 

[Pete1]

Hi @veronicamary, my heart goes out to you. The dementia journey for family carers is so difficult, very few come through without feelings of guilt or regret when that loved one passes. Such a shame you can't get the counselling, perhaps tell your family how you are really feeling? Take care of yourself.

 

[Karen22]

I don't post much these days, but I do check in now and again as I still feel this is the only place where people understand dementia, and all that it bestows upon us.

It was a year yesterday since mum died. Initially I thought I was doing OK. I distracted myself with lots of contact with friends and a few holidays, but I now think that didn't do me a huge favour as I seem to be coping worse now than I was then. I'm not crying as much, but my head is still full of all the horrible dementia memories, upsetting my thoughts, and stopping me from moving on with my life. Am I depressed? I don't know, I don't think so. But I feel so down at times. I have no purpose in my life now. Dementia seems to have taken so much away from me - not just my lovely mum, but my job, my ability to work and my confidence as well. What a horrid disease. I hate what it does to family and carers, as well as the sufferer.

One year on, I have no regrets about how hard it was caring for mum, but I'm not in a good place. Maybe it's too soon, maybe I need more time. Maybe I need to go and see that counsellor again. Will I ever get over this? Probably not. Will I ever feel any better about it all? I hope so. It has definitely changed me, and not in a good way.

The counsellor who I went to see a couple of times while caring for mum was good, but I don't think she really 'got' dementia, which didn't help. I wish there was someone out there who really understood what we go through as carers, and specialised in post caring counselling. I've been through a huge trauma, but feel there's help for me out there.

Maybe I just need more time … I hope so!

I can really relate to your post as I'm struggling after my dad's death in May. It's not so much his death but what I saw him go through over the two to three years, and particularly in the last six months of his life. I feel guilty even though I did everything I could but made a bad decision moving him closer to me. I didn't have much choice as I was told he couldn't stay where he'd been happy for two years but I'm sure that the move contributed to him giving up. Plus the hospital ward he went to at the end wasn't good. All these things haunt me now and I wish I could go back to put them right or at least come to terms with them. I know that it's early days but it's so hard. You have my sympathy. I'm having counselling but it's not Bereavement counselling and is only helping a little.
Karen

 

[Marcelle123]

I can really relate to your post as I'm struggling after my dad's death in May. It's not so much his death but what I saw him go through over the two to three years, and particularly in the last six months of his life. I feel guilty even though I did everything I could but made a bad decision moving him closer to me. I didn't have much choice as I was told he couldn't stay where he'd been happy for two years but I'm sure that the move contributed to him giving up. Plus the hospital ward he went to at the end wasn't good. All these things haunt me now and I wish I could go back to put them right or at least come to terms with them. I know that it's early days but it's so hard. You have my sympathy. I'm having counselling but it's not Bereavement counselling and is only helping a little.
Karen

Very best wishes to you too, Karen. You couldn't help it that the move didn't work out or that the hospital ward was so bad. But I know how you feel - there is plenty that I regret too.

Hoping things become easier in the next few months. xx

 

[Marnie63]

As time goes on, I'm beginning to realise that the feelings I have will never go away. I obviously can't undo the experience of mum's dementia and I can't unsee and undo everything that happened. I realise life is tough, and maybe I was lucky not to have experienced anything too awful until mum got dementia and I became her carer (even watching my father decline quickly with cancer doesn't line up with what I experienced with mum). It happened and I have to deal with it, somehow. I really don't think either CRUSE or a counsellor will be able to help me. I think I just have to try to work my way through it, my own way. I will stay part of the TP community, I will continue to talk to good friends when I need to, and will continue to try to rebuild some sort of life for myself. It's grim when the future doesn't seem particularly happy, but hopefully it will become a tiny bit happier as more time passes.

 

[Marcelle123]

@Marnie63 - a very sensible assessment, but I hope things become more than a tiny bit happier, even though the memories are such a nightmare.
Very best wishes xx

 

[Karen22]

Very best wishes to you too, Karen. You couldn't help it that the move didn't work out or that the hospital ward was so bad. But I know how you feel - there is plenty that I regret too.

Hoping things become easier in the next few months. xx

Thank you. x

 

[Karen22]

Isn't this site great. I feel understood here as nowhere else. Thank you.

Karen

 

[BIWO]

My dear Mum died nearly two years ago and I still live with the guilt around her having to go into a CH. Subsequently in my travels I have met others who have felt similar emotion. My Mum's Mother also had Dementia and she also suffered this guilt complex about how she was treated at the end of life. I guess what I am saying is that the guilt will never go away but it is learning to live with it and how you move on from it. I have had many a dark day pondering this and as family we look at the short term future and what can be done on the bucket list as when you are both you Mum and GM had dementia it does make you rethink you life.

 

[Prudencecat]

My mam died in July this year. She died in hospital anything but a peaceful end until the last few minutes something that will stay with me forever. I too have a lot of regrets she went in to a care home in March and seemed to go down hill rapidly. If I had known how long she had left I would have kept her at home. I suppose what I wanted to say is that we can only do the best we can at the time we can't see in to the future. If I had kept her at home maybe I could have kept her going for longer but she didn't have much quality of life.