Unable to cope with how mum died

[Karen22]

I think many of us are haunted by what we witnessed our loved ones going through. We expect hospitals to be able to relieve pain and help us as family members but, in all to many instances, this doesn't happen. I am sure our loved ones wouldn't blame us and would want us to move on as best we can and remember the good times. It's so sad that death and dying aren't talked about more in our society so that a peaceful end could be more of a possibility. Birth is difficult and so is death; we tend to stick our head in the sands about death though which then leads to a shock when we see what can happen in reality.
Karen

 

[myss]

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.

Oh @Jan24 I'm sorry to read about your mum's passing. You later write about the despair and sadness in her eyes but try and compound those sad thoughts with the fact that she knew who you were right to the end. It really touched me to read that all she wanted from you/your family were kisses and comfort. Bless her. Do try take comfort that she loved and seemed to show love to you and her loved ones right up to the very end. All the best to you x.

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

Oh my @Kikki21 I was astounded to read your post about your mum. My dad died just over 2wks ago in similar circumstances. He had a fall on NYE and was actually walking, drinking, and being verbal afterwards. It was only when I touched his neck and he winched was when the paramedics said he should go to local hospital to be checked out.

Turned out he had fractured a bone in his neck and they needed a specialist in another hospital to figure out whether to operate or not. That was it. We kept asking for any update each time we went there. The local hospital doctors were saying they doubt an operation would happen - neither did I as his dementia was at a late stage - but they were waiting on this specialist team to tell them next steps. In that time, dad wasn't eating/drinking much as he slept most of the time (we told them this and to give him a lot of food [we provided it] when he was awake as he had the appetite for it). Then he caught pneumonia.

I hope you don't mind asking - and if it is too painful to reply, I understand - but did you look into this further with the hospital? I am wondering whether to do so or not. I can't help feeling he would have met his end had not been waiting 3 weeks for this team to make up their minds and been at home getting the attention he required.

@Poppy1403 I am also sorry to read about your mum and can unfortunately emphasise about the feeling of guilt. I can surely bet that you did all you could for your mum as much as I tried to do for my dad. It's such a bloody awful condition, their passing has only one positive in that it hasn't got it grip on your mum/my dad anymore and we can now start remembering how lovely they were before the illness took hold. All the best to you too x.

 

[Jane24]

Hi all Thankyou all for your comforting words. I haven’t even been able to come on this site the last couple of weeks , I know I should have , but think I’ve been going through a complete breakdown. I’m fortunate that I have an amazing husband to help me and my sister and daughter . On top of losing my mum there are other awful family problems going on and this tipped mo over the edge. What I’d like anyone to tell me is how do I cope with my grief and the rest of life when it goes horrible. I feel I’ve just about had enough ,I’m missing mum more than ever she would have been there for me so much too. I constantly look at her photo and cry

 

[Shedrech]

hi @Jane24
I remember asking my dad how he coped with a very difficult time in his life ... he said just place one foot infront of the other then do it again ... I hope it helped him that I was willing to walk beside him, however slowly we went

his words have helped me since ... I took them to mean, don't expect to feel better, just accept and take each moment as it is ... the steps and moments add up and eventually see us through

go easy on yourself and cherish your husband, sister and daughter ... your daughter, especially, feels for you how you felt for your mother, and you both are living parts of her

 

[Karen22]

I wish I knew what was right and whether to complain about my dad's treatment in hospital during his last days. I feel that the hospital killed him as a junior doctor gave him fluids which then filled his lungs again. I wasn't there as much as I wanted to be but am ill myself and live 20 miles from the hospital. His death haunts me still and I'm so unsure what to do now. I can really sympathise with everyone who is caught in a similar dilemma. Our loved ones deserved a peaceful end - dad had 'anticipatory medication' ready but they were never used despite me asking that they would be. I feel the hospital was negligent but would they listen if I complained - I only don't want this to happen to someone else.
Karen

 

[Kikki21]

@myss I think it was my mum’s time to pass.
The reason she started to be sick was due to a bowel obstruction but they couldn’t figure out what was causing it? I know that is difficult to believe. Then she got aspiration pneumonia. Her appetite was going before then anyway as I do believe she was dying. Could the hospital prevented her getting aspiration pneumonia? More than likely but she was getting pumped full of antibiotics & they were not working.
I would rewind a year previous though when the hospital unsafely discharged her from a chest infection only for her to suffer a massive seizure 5 minutes after she returned home, luckily in the presence of a carer which sent her straight back to hospital. That to me was much more negligent!

 

[Jane24]

hi @Jane24
I remember asking my dad how he coped with a very difficult time in his life ... he said just place one foot infront of the other then do it again ... I hope it helped him that I was willing to walk beside him, however slowly we went

his words have helped me since ... I took them to mean, don't expect to feel better, just accept and take each moment as it is ... the steps and moments add up and eventually see us through

go easy on yourself and cherish your husband, sister and daughter ... your daughter, especially, feels for you how you felt for your mother, and you both are living parts of her

Thankyou , knowing the advice you were giving me came from words from your dad means a lot, I was so close to my dad too I lost him 3 years ago too. My problems now are with my son and partner , and this has devastated me that this can be happening on top of losing my mum

 

[DesperateofDevon]

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.

I too understand that crippling sadness
Try to be kind to yourself lovely
Xx

 

[DesperateofDevon]

Hi all Thankyou all for your comforting words. I haven’t even been able to come on this site the last couple of weeks , I know I should have , but think I’ve been going through a complete breakdown. I’m fortunate that I have an amazing husband to help me and my sister and daughter . On top of losing my mum there are other awful family problems going on and this tipped mo over the edge. What I’d like anyone to tell me is how do I cope with my grief and the rest of life when it goes horrible. I feel I’ve just about had enough ,I’m missing mum more than ever she would have been there for me so much too. I constantly look at her photo and cry

I yelled & screamed - very primal but hugely cathartic; I found I was angry with myself & the poor care Dad recieved. since the meltdown ( primal screaming bit!) I am giving myself time to just be... when my heart feels like it’s breaking I say out loud “I am sad, & I miss you & love you”
If I’m on my own I sit on the stairs & have a moment - why the stairs .... ? Well this sounds silly but stairs are a place for going up & down & therefore suits the up & down emotions I’m experiencing. yes I know I’m weird but in a funny way my grief seems contained & cop-able in that environment

you aren’t alone in this overwhelming grief, my daughter said “it’s a reflection of how much love there is / was between you”

I find comfort in that thought
((((((Hugs)))))))

 

[theunknown]

Hi all Thankyou all for your comforting words. I haven’t even been able to come on this site the last couple of weeks , I know I should have , but think I’ve been going through a complete breakdown. I’m fortunate that I have an amazing husband to help me and my sister and daughter . On top of losing my mum there are other awful family problems going on and this tipped mo over the edge. What I’d like anyone to tell me is how do I cope with my grief and the rest of life when it goes horrible. I feel I’ve just about had enough ,I’m missing mum more than ever she would have been there for me so much too. I constantly look at her photo and cry

No-one can help you to cope with grief, because we're all individuals. Feel for you going through this. It's horrible, but it's normal. Some days you'll cope - other days it'll be overwhelming. There are no rules. You've obviously got so much stressfull stuff going on at the moment with family things, and maybe that excerbates the feelings you're going through now you've lost your mum. Take it hour by hour, and know that how you feel in the moment won't be how you feel a few hours later.

 

[Karen22]

Stay strong and remember your mum as she would want you to and live as she would want. It's awful to be plunged straight into another family crisis when you are trying to grieve. I've been there after my lovely mum died. Just keeping putting one foot in front of the other - things do get easier at some stage. It took 6 years for my situation and still ongoing. Dad caused my no end of heartache after mum died and then the years trying to get him the best care despite what he had done to mum and then myself but we go on. Be kind to yourself. I think what my mum would say to me if she were here.

Karen

 

[Hazara8]

The nature of dementia brings with it elements which compound the moment that it finally comes to an end. Unlike deaths which are seemingly "gentle" in their process when an individual's life draws to a close devoid of these elements (Alzheimer's etc). The end of life dementia death can be exceedingly difficult to accept. The "double bereavement " is often cited in this respect. When you lose the loved one to this unforgiving disease and travel that unpredictable road which embraces the neurological and the physical deterioration with all its aspects and often unbearable demands, that loss is felt each and every moment as it is expressed in often bizarre unfamiliar behaviour, aggression or plain alienated response to affection and desperation. All of this can only be truly understood by direct and unbroken contact or relationship, as quite innocently both siblings and close friends in relating to spasmodic interaction, do not see nor experience the whole picture. Thus sensitivity is heightened through that continuity of attachment and the love of that person, due to their vulnerability, their total reliance on you as carer and as say, daughter or son or spouse, which intensifies the whole situation beyond just actual "care" per se. All of this builds a quite profound "secondary bond" with that person because you are responsible for their welfare primarily and also mentally bonded in as much as you have to think for that person too - diet, washing, comfort etc. But it does not end there. You have to engage with their " reality" which is not easy. But you soon learn that you can NEVER challenge dementia - a very important lesson. And hospitals alas, can unwittingly exacerbate the deterioration in respect of dementia, because they don't have time to address the subtleties of the disease in that environment. So, when that day arrives and the loved one finally breaks free from the unremitting and cruel affliction we term dementia, it is that sheer depth of care and despair and trauma or heartbreak which makes for a degree of pain and anguish so seemingly impossible to imagine ever ending. You look at the photograph of that loved one smiling back at you and it is like an electric shock through your heart. You cannot dispel the images of hospital the tears or the day after day tending to someone who refuses to eat nor drink and thus grows weaker and frailer and there is nothing whatsoever that you can do to change it. Grief becomes a companion and permits no light to enter your world. And yet light will enter that world. The light of truth and love. The laughter and the love which was abundant before the dementia and which infiltrated that dementia at unexpected moments. The love you gave without seeking gratitude nor any response at all. The spirit of a human life enveloped by a seemingly brutish disease blind to any humanity, the squeezing of a hand conveying recognition without a word being spoken and the look of an eye which expressed the very essence of the soul within.....all of this cannot be changed nor ever harmed. And in that alone you find solace because it is truth and not hope nor expectation nor speculation. When the clouds of despair slowly clear.... a sense of joy comes about, uninvited and profound. That joy is also truth and belongs to no one and cannot be owned.

 

[Jane24]

The nature of dementia brings with it elements which compound the moment that it finally comes to an end. Unlike deaths which are seemingly "gentle" in their process when an individual's life draws to a close devoid of these elements (Alzheimer's etc). The end of life dementia death can be exceedingly difficult to accept. The "double bereavement " is often cited in this respect. When you lose the loved one to this unforgiving disease and travel that unpredictable road which embraces the neurological and the physical deterioration with all its aspects and often unbearable demands, that loss is felt each and every moment as it is expressed in often bizarre unfamiliar behaviour, aggression or plain alienated response to affection and desperation. All of this can only be truly understood by direct and unbroken contact or relationship, as quite innocently both siblings and close friends in relating to spasmodic interaction, do not see nor experience the whole picture. Thus sensitivity is heightened through that continuity of attachment and the love of that person, due to their vulnerability, their total reliance on you as carer and as say, daughter or son or spouse, which intensifies the whole situation beyond just actual "care" per se. All of this builds a quite profound "secondary bond" with that person because you are responsible for their welfare primarily and also mentally bonded in as much as you have to think for that person too - diet, washing, comfort etc. But it does not end there. You have to engage with their " reality" which is not easy. But you soon learn that you can NEVER challenge dementia - a very important lesson. And hospitals alas, can unwittingly exacerbate the deterioration in respect of dementia, because they don't have time to address the subtleties of the disease in that environment. So, when that day arrives and the loved one finally breaks free from the unremitting and cruel affliction we term dementia, it is that sheer depth of care and despair and trauma or heartbreak which makes for a degree of pain and anguish so seemingly impossible to imagine ever ending. You look at the photograph of that loved one smiling back at you and it is like an electric shock through your heart. You cannot dispel the images of hospital the tears or the day after day tending to someone who refuses to eat nor drink and thus grows weaker and frailer and there is nothing whatsoever that you can do to change it. Grief becomes a companion and permits no light to enter your world. And yet light will enter that world. The light of truth and love. The laughter and the love which was abundant before the dementia and which infiltrated that dementia at unexpected moments. The love you gave without seeking gratitude nor any response at all. The spirit of a human life enveloped by a seemingly brutish disease blind to any humanity, the squeezing of a hand conveying recognition without a word being spoken and the look of an eye which expressed the very essence of the soul within.....all of this cannot be changed nor ever harmed. And in that alone you find solace because it is truth and not hope nor expectation nor speculation. When the clouds of despair slowly clear.... a sense of joy comes about, uninvited and profound. That joy is also truth and belongs to no one and cannot be owned.

Thank you thank you for your amazing insight into exactly how it has all been for me or anyone else going through this awful journey with their loved one, how I wish I could get the people in my life to realise this is is exactly how it is how you have described it. Only yesterday we were with friend who hadn’t seen me since my mum died and was told I’m allowed three months to grieve then I must get on with it.
Now also because of the upset within the family everything is heightened and I need that role back in life . My sister and I always said dementia gave us a different mum and it was a very loving time with her . Your support has helped me Thankyou x

 

[Jane24]

No-one can help you to cope with grief, because we're all individuals. Feel for you going through this. It's horrible, but it's normal. Some days you'll cope - other days it'll be overwhelming. There are no rules. You've obviously got so much stressfull stuff going on at the moment with family things, and maybe that excerbates the feelings you're going through now you've lost your mum. Take it hour by hour, and know that how you feel in the moment won't be how you feel a few hours later.

Stay strong and remember your mum as she would want you to and live as she would want. It's awful to be plunged straight into another family crisis when you are trying to grieve. I've been there after my lovely mum died. Just keeping putting one foot in front of the other - things do get easier at some stage. It took 6 years for my situation and still ongoing. Dad caused my no end of heartache after mum died and then the years trying to get him the best care despite what he had done to mum and then myself but we go on. Be kind to yourself. I think what my mum would say to me if she were here.

Karen

 

[Jane24]

Thank you everyone for your continuing support , so many of you truly understand this difficult,sad road we go on with dementia . I am trying to take comfort in knowing my mum is at peace and out of the horrible place she was in ,and feel so selfish for wanting her back in my life again ,but I long to hold her hand and give her one of her endless kisses she wanted from me , I miss her every single minute of every single day.
I cannot believe I am being put through another family ,conflict on top of losing my mum .

 

[Hazara8]

Thank you thank you for your amazing insight into exactly how it has all been for me or anyone else going through this awful journey with their loved one, how I wish I could get the people in my life to realise this is is exactly how it is how you have described it. Only yesterday we were with friend who hadn’t seen me since my mum died and was told I’m allowed three months to grieve then I must get on with it.
Now also because of the upset within the family everything is heightened and I need that role back in life . My sister and I always said dementia gave us a different mum and it was a very loving time with her . Your support has helped me Thankyou x

Thank you, Jane. I am afraid that the immensity of emotions and despair can never really be communicated and even in a Care Home environment which l frequent, Carers can apply proper care and attention to needs, to an extent. The things we speak of are so profound at the time, it would be impossible to relate that reality even to our loved ones. It is another country into which even specialists cannot venture - until they too become party to all we have known and experienced. My warmest wishes Jane.

 

[Jane24]

Thank you, Jane. I am afraid that the immensity of emotions and despair can never really be communicated and even in a Care Home environment which l frequent, Carers can apply proper care and attention to needs, to an extent. The things we speak of are so profound at the time, it would be impossible to relate that reality even to our loved ones. It is another country into which even specialists cannot venture - until they too become party to all we have known and experienced. My warmest wishes Jane.

Absolutely true we experienced that so much in the care home ,I was constantly told you worry to much , but as my mum was unable to communicate with speech ,I had to step up and be her advocate as well as her daughter. Thankyou for your support xx

 

[Philbo]

Hi @Jane24

So sorry for your loss and I can really empathise as I sadly lost my lovely wife on 19th January. For her too, it was a very traumatic last 3 weeks and very difficult for myself and the family (our 2 sons and DILs, her siblings), who were all at her side all that day.

My sons originally wanted to visit her in the chapel of rest and though I really didn't want to, I would have done to support them. However, as none of us could face doing so the first week after, by the time we could all get there, the undertakers warned me that it may be harrowing.

I talked to my sons and as we had spent all week going through photos from happy times, to include in the order of service, I reasoned that it would be very difficult if our last "image" was so heart breaking. So we all agreed not to go - a decision that I honestly think was the right one for us.

The funeral is next week, which I know is going to be so emotional that I don't know how we will cope?
What I am determined though, is that her wake at our local pub, which has been the source of unbelievable support, kindness and happiness during our 6 year journey, will be a joyous event. She had some lovely times there and we will give her the send off she truly deserves.

To you Jane (and all others who have gone through a similar loss), we all deal with this in our own way. Some can cope straightaway, others need more time, love and support to get through it. I have found that opening up my heart to others has helped me a lot. Since my wife's passing, I have never spent so much time answering messages, phone calls and visitors. This has been very heartening but I plan to have some time away the week after the funeral. This will be mainly on my own (will visit a couple of relatives who couldn't make it) as I just need that quiet "me time" to reflect on the last 6 years and our happier times during our 48 years of marriage.

I hope you can all find your own ways through your grief so best wishes.
Phil

 

[myss]

I just realised a mistake I made with my last post - I missed the word in capitals:

I hope you don't mind asking - and if it is too painful to reply, I understand - but did you look into this further with the hospital? I am wondering whether to do so or not. I can't help feeling he would NOT have met his end had not been waiting 3 weeks for this team to make up their minds and been at home getting the attention he required.

@myss I think it was my mum’s time to pass.
The reason she started to be sick was due to a bowel obstruction but they couldn’t figure out what was causing it? I know that is difficult to believe. Then she got aspiration pneumonia. Her appetite was going before then anyway as I do believe she was dying. Could the hospital prevented her getting aspiration pneumonia? More than likely but she was getting pumped full of antibiotics & they were not working.
I would rewind a year previous though when the hospital unsafely discharged her from a chest infection only for her to suffer a massive seizure 5 minutes after she returned home, luckily in the presence of a carer which sent her straight back to hospital. That to me was much more negligent!

Thank you @Kikki21 for replying. With my dad, although he was sleeping a lot more, he still had an appetite. I can recall on his second day in hospital, strongly pulling at my hand towards him as I was holding a banana that I was peeling for him.
In his second week there, there was talk of discharge by the local hospital doctors and we even had the occupational therapist and the district nurse call in preparation for his discharge. The only thing holding him in the local hospital was waiting on this specialist from another hospital to make up their mind.

That said though, like you say with your own circumstance, he was getting antibiotics and they appear not to have worked. I have an appointment in the same local hospital for my own health, I may just pop into the PALS office and raise my query while I am there. Thank you again.

 

[Jane24]

Hi @Jane24

So sorry for your loss and I can really empathise as I sadly lost my lovely wife on 19th January. For her too, it was a very traumatic last 3 weeks and very difficult for myself and the family (our 2 sons and DILs, her siblings), who were all at her side all that day.

My sons originally wanted to visit her in the chapel of rest and though I really didn't want to, I would have done to support them. However, as none of us could face doing so the first week after, by the time we could all get there, the undertakers warned me that it may be harrowing.

I talked to my sons and as we had spent all week going through photos from happy times, to include in the order of service, I reasoned that it would be very difficult if our last "image" was so heart breaking. So we all agreed not to go - a decision that I honestly think was the right one for us.

The funeral is next week, which I know is going to be so emotional that I don't know how we will cope?
What I am determined though, is that her wake at our local pub, which has been the source of unbelievable support, kindness and happiness during our 6 year journey, will be a joyous event. She had some lovely times there and we will give her the send off she truly deserves.

To you Jane (and all others who have gone through a similar loss), we all deal with this in our own way. Some can cope straightaway, others need more time, love and support to get through it. I have found that opening up my heart to others has helped me a lot. Since my wife's passing, I have never spent so much time answering messages, phone calls and visitors. This has been very heartening but I plan to have some time away the week after the funeral. This will be mainly on my own (will visit a couple of relatives who couldn't make it) as I just need that quiet "me time" to reflect on the last 6 years and our happier times during our 48 years of marriage.

I hope you can all find your own ways through your grief so best wishes.
Phil

Thankyou Phil , I’m so sorry to hear of your loss of your wife. I was like you at first very busy organising the funeral , informing people, and afterwards sending out order of services to people who couldn’t come to funeral.
It all helped me keep going . But now it’s all over it’s hit me so hard that I will never see my mum again. I did go and sit with her after she’d passed , I’m so glad I did , but I know it’s not for everyone.
The worse part now is trying to just deal with life and all it’s throwing at me . As stressful things happen it’s bringing it all back to the front of my mind again and heightening my grief. like you I’m going away this week to stay with my sister for a few days , but I know when I come back I come back to it all.
My best wishes to you and all your family xx