Hi everyone, I'm new on here, wish I'd found this sooner really. I've been reading your posts and my heart goes out to every one of you. My mum is only 71 and is dying. She has had advanced vascular dementia and late stage MS for 2 years now. Since January she has been in a care home as we were no longer able to care for her at home. She can't eat, speak, move, has bed sores that won't heal no matter how careful the care team are and severe oral thrush. Basically a tiny frail body with a heart that is somehow still going. She has been on the free list 5 times this year but has kept pulling through. I think this time though she has used all her 9 lives up. I got her a size 6 fluffy nightdress for Christmas (the smallest I could buy) and it drowns her. Probably the most ridiculous thing to push me over the edge but there we are, that was the final straw. She is in so much pain I just want her to go to sleep but I also know she is petrified of dying and so I feel guilty about thinking this. I am supposed to be having 2 nights away with my husband and son and am really worried I won't be there when she needs me. I know I have absolutely gone above and beyond over the past 2 years but there's a part of me that still feels I've not done enough. Thanks for giving me a place to vent and big hugs to anyone else going through this
Feeling helpless
- Thread starter He1en
- Start date
Thankyou you for your support. Better out than in usn't it. I've held it all inside so long I think I just needed to get it out. X
I think we have all felt at times that we have not done enough. We all carry misplaced guilt of some kind. It is the most horrendous journey that we all share. I wish you the very best and the strength to continue supporting your mum in the difficult times that undoubtedly lie ahead. I hope that you will find some comfort in knowing that you are not alone in this battle ?
Thank you, it doesn't feel quite as lonely tonight although it's bitter sweet that there are so many of us x
@He 1 en
I totally understand how you are feeling, I have been on this journey for about 9 years now. My Mum's descent into dementia started as my Dad was dying, once he passed I saw clearly how many things were not quite right, things I would have noticed if I hadn't been so preoccupied with my Dad's needs. For the last 6 years I have seen my Mum virtually every day, first in a fancy retirement home, then my home, and for the last 4 years in a care home 5 minutes from my house. Apart from a 2 week holiday, once a year, I have sat with my Mum through rollercoasters of highs, and lows, hospital trips, near death experiences and now ,like you, I am seeing someone half her normal size, unable to eat herself or communicate etc etc. and she appears to be suffering. I am afraid when I I leave her each night she will die alone, without me holding her hand. My life has been determined by by promise to my Dad to look after her, and the love I have for my Mother.
My reason for sharing this with you is to tell you to go on that trip!!!!!!!
No matter whether we are sitting by her side or not if and when she passes, we will think we could have done more but the truth is with dementia there is so nothing that you can do that will change the journey, or the outcome.
Looking back I wish someone had told me this sooner, it is harsh , but it is the reality of dementia . I find myself wondering if I will ever recover from this, despite having a supportive husband and two lovely adult children and their partners, I feel so ravaged by this journey, and it is not even over yet.
Soooooo, give yourself the right to do some things you want to do, not just what you have to do to get by. Start with that trip! I wish you Strength
I totally understand how you are feeling, I have been on this journey for about 9 years now. My Mum's descent into dementia started as my Dad was dying, once he passed I saw clearly how many things were not quite right, things I would have noticed if I hadn't been so preoccupied with my Dad's needs. For the last 6 years I have seen my Mum virtually every day, first in a fancy retirement home, then my home, and for the last 4 years in a care home 5 minutes from my house. Apart from a 2 week holiday, once a year, I have sat with my Mum through rollercoasters of highs, and lows, hospital trips, near death experiences and now ,like you, I am seeing someone half her normal size, unable to eat herself or communicate etc etc. and she appears to be suffering. I am afraid when I I leave her each night she will die alone, without me holding her hand. My life has been determined by by promise to my Dad to look after her, and the love I have for my Mother.
My reason for sharing this with you is to tell you to go on that trip!!!!!!!
No matter whether we are sitting by her side or not if and when she passes, we will think we could have done more but the truth is with dementia there is so nothing that you can do that will change the journey, or the outcome.
Looking back I wish someone had told me this sooner, it is harsh , but it is the reality of dementia . I find myself wondering if I will ever recover from this, despite having a supportive husband and two lovely adult children and their partners, I feel so ravaged by this journey, and it is not even over yet.
Soooooo, give yourself the right to do some things you want to do, not just what you have to do to get by. Start with that trip! I wish you Strength
My story almost mirrors yours. I first saw the warning signs 8 years ago, as my Dad lay dying in hospital, he asked my mum to bring him just 3 simple things, then asked her had she written that down? I remember wondering why he had insisted in her writing it down. After his passing it soon became evident that he had been carrying her in many ways that i had not realised. Fast forward 8 years and mum is now in a care home, scarcely eating, immobile and disappearing both mentally and physically at an alarming rate. It is only in recent weeks that I have been made to realise, that my own self-care MUST come first and I should not feel guilty about that.
You don't realise it at the start of the 'dementia journey' but you do need to pace yourself as many people live for years after diagnosis. My mother lived for seven years after diagnosis but, looking back, was showing symptoms for at least a couple of years before that. Most people don't get help in early enough and struggle on for far too long until exhaustion sets in. The stinginess of the social care funding system doesn't help. Paying for even a couple of care visits a day soon mounts up.
Hi He 1en,
Although my mum is not at end of life, every time I visit her I leave the nursing home nearly in tears, and always say to my husband I wish she could go to sleep and not wake up. The dementia has really taken it's toll on her both mentally and physically and her days are spent laying in bed either looking at the ceiling, pulling her fingers until they are sore as well as other things. I think it's because we love/care about them that we have these thoughts.
Take care of yourself, sending hugs
Although my mum is not at end of life, every time I visit her I leave the nursing home nearly in tears, and always say to my husband I wish she could go to sleep and not wake up. The dementia has really taken it's toll on her both mentally and physically and her days are spent laying in bed either looking at the ceiling, pulling her fingers until they are sore as well as other things. I think it's because we love/care about them that we have these thoughts.
Take care of yourself, sending hugs
So sorry to hear what you are going through, my wife has a diagnoses of Alzheimer's and is a similar age to your mum. I gave up my job to look after her.
I am sure you have done enough however I am concerned why she has bed sores, oral thrush and in pain.
These issues are a safeguarding issue, your mum should be rotated and repositioned hourly which will reduce her bed sores, I assume she is doubly incontinent therefore her pad must be changed regularly and oral thrush can be treated. If she is on end of life or palliative care she should be pain free, which will also help her fear of dying.
Unfortunately in my experience what you mum is experiencing is all too common in care homes
Do not feel guilty about having two nights away, you deserve it and good luck for the future
as mentioned in a previous post I now care for my wife 24/7. I have been in care homes and what you describe is all too familiar. Although your mum has a diagnoses of dementia why are staff leaving her in bed ?
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I am so sorry you have been through such a lot. It's so hard isn't it? I've given up my business and social life to help care for her over the last 5 years (last 2 extensively) and my son is only just 14 I am so conscious time with him is flying by and still I don't feel I do enough for her. But, you are so totally right and thank you for your words. I feel guilty enjoying myself when she is so ill but life goes on and there is fantastic stuff on my doorstep. Maybe it's time to be a bit more balanced. I have actually wondered at times whether me being with her everyday is detrimental to her, maybe she would actually appreciate some space. Thank you!! You are right, I am a fixer by nature but I can't fix this and I am making myself ill trying. Thank you for your support, I don't think I am seeing this as wisely as you but if I can return the support at all I am here. Thank you and here's to respectfully rekindling some joy for us both x
A massive hug to you and thank you for sharing your story. Strength to us both and better days ahead xx
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