Unable to cope with how mum died

Jane24

Registered User
Jul 28, 2019
13
My dearest mum passed away on December 4th, I was with her at the end,she died in my arms. The end was awful especially the last 5 weeks when she stopped eating and drinking,she had aspiration pneumonia which is a terrible thing to witness. The whole journey of mums Alzheimer’s has been so distressing she was in care for 4 years, and in that time I also lost my dad to cancer. We moved them both in with us but mums Alzheimer’s got worse and she went into nursing home. the grief I’m feeling is overwhelming,
I try to take comfort in the knowledge my mum knew us right to the end, Alzheimer’s gave us a different mum all she ever wanted from us was lots of kisses and us just to be by her side and hold her hands, which my sister and I did. I used to go nearly every day to be with her for some of the day. I just don’t know how to go on without her my heart is broken .
The worst part is the feelings I have about all my poor mum went through with this terrible illness, she was such an amazing lady ,the end of her life has been so sad ,so long so undignified and so unfair, I can’t stop thinking about the sadness of it.
 

Pete1

Registered User
Jul 16, 2019
469
Hi @Jane24, welcome to the forum. I can totally identify with how you feel, the whole journey through dementia is brutal, as is the end that you experienced. The dementia journey is often referred to as the long goodbye and you can experience grief and loss though out that time, and it can be all consuming in our life, making the eventual passing feel like an even greater loss. I hope you have someone to talk to about your feelings? I bottled it all in but eventually (after several months) went for bereavement counselling which did help me to deal with the loss of my Mum. Please try and take solace that you were there for Mum in her time of need.
 

canary

Registered User
Feb 25, 2014
11,278
South coast
Im sorry @Jane24 . It is an aspect of dementia that nobody talks about apart from places like this. When death is depicted on TV it is all over in a few minutes and no-one prepares you for the way the body shuts down over days and weeks when you died from dementia. My own mum went 15 days with absolutely no food or fluid and even though I knew this is what happens, I found it hard going.

Your grief is bound to be raw and your emotions all over the place. Make sure you eat and sleep.
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
 

Jane24

Registered User
Jul 28, 2019
13
Hi @Jane24, welcome to the forum. I can totally identify with how you feel, the whole journey through dementia is brutal, as is the end that you experienced. The dementia journey is often referred to as the long goodbye and you can experience grief and loss though out that time, and it can be all consuming in our life, making the eventual passing feel like an even greater loss. I hope you have someone to talk to about your feelings? I bottled it all in but eventually (after several months) went for bereavement counselling which did help me to deal with the loss of my Mum. Please try and take solace that you were there for Mum in her time of need.
Th
 

Jane24

Registered User
Jul 28, 2019
13
Thankyou for your support, her funeral was only last Monday , and we called her eulogy the long goodbye, we summed up with saying we went through the worst and best times with our mum. It’s a heartbreaking journey we take with them.
 

Jane24

Registered User
Jul 28, 2019
13
Im sorry @Jane24 . It is an aspect of dementia that nobody talks about apart from places like this. When death is depicted on TV it is all over in a few minutes and no-one prepares you for the way the body shuts down over days and weeks when you died from dementia. My own mum went 15 days with absolutely no food or fluid and even though I knew this is what happens, I found it hard going.

Your grief is bound to be raw and your emotions all over the place. Make sure you eat and sleep.
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
Your so right in all you say, it’s so traumatic to go through absolutely nothing like it’s portrayed. It seems like it is your loved ones last choice but the fact is they can no longer swallow or take food or swallow. This was on going with mum for so many months when mum had to have everything thickened you could stand your spoon in her cup of tea it was like wallpaper paste, and all food was puréed. It’s so so sad
 

canary

Registered User
Feb 25, 2014
11,278
South coast
the fact is they can no longer swallow or take food or swallow
This is the thing that gets so many people - often it is portrayed as them "starving to death", but actually their bodies are already shutting down and by the time that they cannot swallow, they are actually already dying and do not need any food or fluid. When mum was at this stage she clamped her mouth shut and wouldnt take anything in. I did manage to get something in her mouth and then she just coughed and spat it all out. Not only could she not swallow, but she didnt want to either. She didnt die because she wasnt eating - she wasnt eating (and couldnt eat) because she was already dying.
 

Kikki21

Registered User
Feb 27, 2016
2,244
East Midlands
@Jane24 - any death is very sad but a death with dementia involved is just heart breaking as there is often a long period involved beforehand when you can see that deterioration happening & there is nothing you can do.
My mum went into hospital with what seemed a minor issue & 3 weeks later, she didn’t come out & she too got aspiration pneumonia - that for me was the most horrendous aspect.
I was with my mum every day that she was in hospital especially her final week. It was truly horrendous.
However, please try & take some comfort that you were there with your mum & you did everything for her that you could do. Things will ease in time & feel better x
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,442
Yorkshire
hello @Jane24
a warm welcome to DTP
so sorry to read that you have lost both your mum and dad
you gave your mum the most amazing gift of holding her to the last

I hope this doesn't sound trite ... after dad's death in january I too first had the last years in mind, then looked through photos of his life, with all the smiles of being with mum, who died 13 years before him, and saw again the stages of their lives that they had enjoyed ... somehow it put the closing of their lives in that wider perspective and comforted me that actually there had been much pleasure and joy for them both ... I chose a couple of photos of them to frame and place prominently so I see them every day, and see them happy ... I still feel anger and such sadness over their latter years though, and the photos help me replace that with a smile and the knowledge that we always did what we could for each other

all the best to you and your sister
 

imthedaughter

Registered User
Apr 3, 2019
152
I am so sorry for your loss. You are among friends, some of us have experienced this and some of us have this in our futures.

This may not be helpful, but a podcast about cancer I listen to (which is surprisingly jolly, all things considered!) had a palliative care nurse on one episode which explained a lot of the noises and processes around dying and how the body shuts down, which made me think about the final days in a totally different way. Of course, each death is different, but if you decide you want to give it a try it's on BBC sounds here: https://www.bbc.co.uk/programmes/p070s3z1

Look after yourself and know you did your best, it sounds like you had a wonderful relationship. Hugs to you!
 

Jane24

Registered User
Jul 28, 2019
13
Thank you everyone ,for all your support , all that you all say is so true and how it is , I feel like I ll never come to terms with my mum being taken in such a way, it’s a cruel illness. I will never get out of my head the look Of utter despair and sadness in her eyes . I know I should be thankful she is at peace now and with my dad ,they were together for 69years, also she’s with my baby brother and my older sister who I have lost too. But I spent so much time with her and dad over the years and especially the last 5, I’m so lost without them .
 

Marnie63

Registered User
Dec 26, 2015
1,628
Hampshire
I'm sorry for your loss @Jane24. I understand a little of what you're going through as my own mum had aspiration pneumonia at the end. It was really horrible to witness and it will stay with me forever. It seemed like she was suffering a lot, but the medics in the hospital told me she wasn't and they did administer drugs to help her. I will never know if she suffered or not, but I certainly suffered through watching it. It took her three days to die like that.

What I will say is that a year and four months on, the memory of those last few days has eased a little and I find it easier to live with. I hope it will be the same for you. Initially it felt like the pain of what I witnessed would never ease, it was almost worse than her actual death, if that makes sense, but it has eased.
 

Karen22

Registered User
Nov 3, 2012
85
I can really sympathise with your plight as I watched my mum who had Alzheimer's and was unable to swallow at the end; she got aspiration pneumonia a few times until we agreed to withdraw treatment as I know this is what she would have wanted. My father, who then got dementia, went through an even more awful end although a different lead-up, but my mum's death was more peaceful than my dad's. I'm still struggling with both as one followed fast on the heels on the other so no time to grieve for my lovely mum. I think I am starting to do so now, over five years later, and wish I had been there more for my mum. However, I try to remember and think what she would say to me if she were here now. She wouldn't want me to beat myself up about it but to live on as well as I can without her. I'm sure your mum would say something similar to you. Her pain is at an end and you can help no-one by reliving the horror. Try to find peace as your mum has now found peace. Be kind to yourself as your mum would want you to.
Karen
 

Poppy1403

Registered User
Jun 10, 2016
2
Thank you everyone ,for all your support , all that you all say is so true and how it is , I feel like I ll never come to terms with my mum being taken in such a way, it’s a cruel illness. I will never get out of my head the look Of utter despair and sadness in her eyes . I know I should be thankful she is at peace now and with my dad ,they were together for 69years, also she’s with my baby brother and my older sister who I have lost too. But I spent so much time with her and dad over the years and especially the last 5, I’m so lost without them .
Totally agree Jane24 I lost my beautiful mum early hours this morning, my heart is breaking , she had stopped eating , drinking was immobile and in bed ,last Friday Jan 10th she was groaning , staring at the ceiling , It was such a quick decline all this has happened since Christmas I am beating myself up thinking could I have helped her more , could I have tried to do more given her more fluids etc, I’m questioning was she ready to die .. I feel ill today I have an upset stomach , anxious can’t relax. Mam has had ischaemic vascular dementia for 4 yrs , for the last 15 months we looked after her at home with us as my dad died Oct 18 , but what a journey, it’s been a privilege but it’s also been a nightmare for her and us , on many occasions, hallucinations , sundowning, not sleeping it’s been effectively 24 hr care for 15 months , but we had stuck with it. She said to me it would be hard a week ago , and that she was frightened and help me, and all this when she was mumbling and hadn’t been able to speak for few days , all she wanted to do was put shoes on and go home .. it will always haunt me what she has endured this week, it’s been traumatic seeing her literally waste away and in pain at times in front of us, horrible, horrific disease, surely this can’t continue this day and age it’s a cruel heartless disease and leaves you as a family feeling traumatised having witnessed it. We had district nurses coming here if it hadn’t been for these angels Helping her pain etc I don’t know how we would have coped, she is finally at peace now with my dad they would have been 60 years married in Feb and my brother who died 13 yrs ago of lung cancer , I really hope she doesn’t blame me for not helping her more , couldn’t bear it if this was the case.. Just so tough , the house is so different today and I have lost my best friend and she was such a beautiful , kind, patient loving mum, dementia came into her life and effectively bestowed a death sentence to this lovely lady , HATE IT !! But I understand how you feel Jayne24 really I do.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,442
Yorkshire
such sad news @Poppy1403
good to know the District Nurses helped so much
your mum would never blame you, there's nothing to blame you for ... she knew that you stood by her all this time and couldn't have helped her more ... she knows how much you did for her and how much you mean to each other

be as kind to yourself now as your lovely mum would be if only she could
 

Poppy1403

Registered User
Jun 10, 2016
2
such sad news @Poppy1403
good to know the District Nurses helped so much
your mum would never blame you, there's nothing to blame you for ... she knew that you stood by her all this time and couldn't have helped her more ... she knows how much you did for her and how much you mean to each other

be as kind to yourself now as your lovely mum would be if only she could
Thank you so much this has really lifted me , your so kind x
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,629
Merseyside
I’m so sorry @Poppy1403.
Doubt & guilt seem to go hand in hand with grief. You did everything you could & your mum would have known how much she was loved & cared for.
 

canary

Registered User
Feb 25, 2014
11,278
South coast
Oh @Poppy1403 please dont blame yourself. No-one explains beforehand what it is like when someone dies from dementia. Their bodies close down slowly over weeks and by the time your mum stopped eating and drinking she was already dying. You could not have stopped it - you are right, it was her time to die and Im glad that she is now at peace.
Be gentle with yourself
(((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))
 

Kikki21

Registered User
Feb 27, 2016
2,244
East Midlands
@Poppy1403 it sounds like you did a wonderful job with your mum & looking after her at home too. Many of us on here can’t do so or are unable to do so even if they would want to.
In my mum’s final week in hospital, I was by her bedside most of the time. I monitored how she was & if she was unsettled or looked in pain would request top ups of morphine etc as she was on a syringe driver for a week. I still can’t believe that she hung on so long to be honest. Big hugs to you. Be proud of yourself - you did your best xx
 

Jane24

Registered User
Jul 28, 2019
13
Totally agree Jane24 I lost my beautiful mum early hours this morning, my heart is breaking , she had stopped eating , drinking was immobile and in bed ,last Friday Jan 10th she was groaning , staring at the ceiling , It was such a quick decline all this has happened since Christmas I am beating myself up thinking could I have helped her more , could I have tried to do more given her more fluids etc, I’m questioning was she ready to die .. I feel ill today I have an upset stomach , anxious can’t relax. Mam has had ischaemic vascular dementia for 4 yrs , for the last 15 months we looked after her at home with us as my dad died Oct 18 , but what a journey, it’s been a privilege but it’s also been a nightmare for her and us , on many occasions, hallucinations , sundowning, not sleeping it’s been effectively 24 hr care for 15 months , but we had stuck with it. She said to me it would be hard a week ago , and that she was frightened and help me, and all this when she was mumbling and hadn’t been able to speak for few days , all she wanted to do was put shoes on and go home .. it will always haunt me what she has endured this week, it’s been traumatic seeing her literally waste away and in pain at times in front of us, horrible, horrific disease, surely this can’t continue this day and age it’s a cruel heartless disease and leaves you as a family feeling traumatised having witnessed it. We had district nurses coming here if it hadn’t been for these angels Helping her pain etc I don’t know how we would have coped, she is finally at peace now with my dad they would have been 60 years married in Feb and my brother who died 13 yrs ago of lung cancer , I really hope she doesn’t blame me for not helping her more , couldn’t bear it if this was the case.. Just so tough , the house is so different today and I have lost my best friend and she was such a beautiful , kind, patient loving mum, dementia came into her life and effectively bestowed a death sentence to this lovely lady , HATE IT !! But I understand how you feel Jayne24 really I do.
Oh my god that is so so sad I know the torment you are going through, I can relate to it all , there’s no words ,it’s not getting any easier . How I wish i could have kept my mum at home, you did so much to be able to keep her with you and that must have give her such comfort. That is what I can’t bear that I couldn’t keep mum with me I feel so guilty. The only thing helping me at present is I have a beautiful photo of my mum blowing me a kiss I keep it by my bed , I kiss her every morning and night and talk to her and tell her how much I miss her and hope she’s ok and with my dad,my sister and brother. So sorry for your loss , I know I llnever get over the way my mum had to leave us. Xx