Mum’s deteriorating and I don’t know what to do

[HopefulDaughter]

Hi, I’m just posting on here as I am feeling so down about my Mum.
She is slipping away before my eyes and I don’t know what to do, other than be there for her when I can.
Mum now weighs only around 30kg and her beautiful face is so thin it is breaking my heart to see her like this. As of two weeks ago she is on puréed food only and she no longer speaks or really responds, spending all day in bed in the nursing home.
I feel so helpless when I visit and I can’t stop thinking about her when I leave, wondering if she will make it to the next day. I can’t see how she can go on like this, she is disappearing before my eyes and it she has no quality of life at all.
Can this really continue for much longer??
Grateful for any comments from others who have been through this, or who are on this sad journey.
Thank you.

 

[Lunapup]

Hi, I’m just posting on here as I am feeling so down about my Mum.
She is slipping away before my eyes and I don’t know what to do, other than be there for her when I can.
Mum now weighs only around 30kg and her beautiful face is so thin it is breaking my heart to see her like this. As of two weeks ago she is on puréed food only and she no longer speaks or really responds, spending all day in bed in the nursing home.
I feel so helpless when I visit and I can’t stop thinking about her when I leave, wondering if she will make it to the next day. I can’t see how she can go on like this, she is disappearing before my eyes and it she has no quality of life at all.
Can this really continue for much longer??
Grateful for any comments from others who have been through this, or who are on this sad journey.
Thank you.

Hi HopefulDaughter, I am in the same position as you right now. I was with mum today and she is just skin and bone EOL. I don’t know if I can get through this, it’s torture. I’m being sick and shaking all the time. I don’t know if I have the strength to watch her go. This bloody disease is cruel. I think anticipatory grief is the worst. I’m thinking of you and sending hugs

 

[HopefulDaughter]

Hi @Lunapup, thank you for replying. I’m sorry to hear that you’re going through something similar with your Mum. Thinking of you. Take care.

 

[tansywoo]

Hi, I’m just posting on here as I am feeling so down about my Mum.
She is slipping away before my eyes and I don’t know what to do, other than be there for her when I can.
Mum now weighs only around 30kg and her beautiful face is so thin it is breaking my heart to see her like this. As of two weeks ago she is on puréed food only and she no longer speaks or really responds, spending all day in bed in the nursing home.
I feel so helpless when I visit and I can’t stop thinking about her when I leave, wondering if she will make it to the next day. I can’t see how she can go on like this, she is disappearing before my eyes and it she has no quality of life at all.
Can this really continue for much longer??
Grateful for any comments from others who have been through this, or who are on this sad journey.
Thank you.

Hi, I went through this with my Mum in August. She was discharged from hospital to a nursing home on end of life. I know exactly how you feel. You could be describing my story. The only thing you can do is be there for her. Talk to her, tell her you love her, hold her hand, play her favourite music. It is awful seeing them like that, wanting them still with us, but not wanting them to suffer. Look after yourself too. Keep strong for your Mum and for yourself. Sending hugs.

 

[HopefulDaughter]

Hi, I went through this with my Mum in August. She was discharged from hospital to a nursing home on end of life. I know exactly how you feel. You could be describing my story. The only thing you can do is be there for her. Talk to her, tell her you love her, hold her hand, play her favourite music. It is awful seeing them like that, wanting them still with us, but not wanting them to suffer. Look after yourself too. Keep strong for your Mum and for yourself. Sending hugs.

Hi @tansywoo
Thanks for replying. It’s so helpful to know that other relatives, like you, have been through this as well. I visited my Mum yesterday and we listened to her favourite music. I also put some hand cream on her, (someone on here suggested this to me) which she seemed to like and she responded to the scent. So that was nice.
I’ll keep going to see her. Also need to conserve my energy as not sure how long this will go on for and am a bit exhausted.
Take care

 

[Missodell18]

So sorry to read your post @HopefulDaughter - your mum sounds similar to mine. It's horrible to watch happen and you feel so helpless. Hope you can get through this as well as you can and hope your mum has the minimum of suffering. I try to think that I hope my mum isn't really aware of whats going on, I think she might be in like a dreamy sort of state.

 

[what-to-do]

So many of us in your position yet we all feel alone, I know I do.
Just wondering to make my own post as Dad won't accept puree food now. It's like you're waiting for the end to hurry for the best (theirs) but you selfishly want to not say goodbye. Take care, keep your strength and sending a huggg x

 

[HopefulDaughter]

So sorry to read your post @HopefulDaughter - your mum sounds similar to mine. It's horrible to watch happen and you feel so helpless. Hope you can get through this as well as you can and hope your mum has the minimum of suffering. I try to think that I hope my mum isn't really aware of whats going on, I think she might be in like a dreamy sort of state.

Thank you @Missodell18. It helps to know others are going through this. Take care.

 

[HopefulDaughter]

So many of us in your position yet we all feel alone, I know I do.
Just wondering to make my own post as Dad won't accept puree food now. It's like you're waiting for the end to hurry for the best (theirs) but you selfishly want to not say goodbye. Take care, keep your strength and sending a huggg x

Hi @what-to-do. Thanks for replying. Sorry to hear about your dad. Do post on here - it helps a lot. Everyone is very supportive and people understand what you’re going through.

 

[HartleyHugs]

Hi @HopefulDaughter I wish I had words of wisdom but at the moment this is our situation too. Mum is so frail and last night the GP saw her and stopped her usual daily medication (memantine sertraline simvestatin and aspirin) and increased her pain patch. It's so hard watching our loved ones die slowly in front of us. At the moment mum spends a lot of time asleep but she also has moments of wakefulness and it's then I struggle as she can't communicate properly but keeps saying the same phrases over and over "I don't want to go" or "I do want to go" and it's just so hard to hear as I don't know what to say. I've got to the point now of keeping quiet when she says this then when she stops I'll waffle about my day, or chat to the carers last night she was calm while we were discussing whether cream or jam should go first on a scone.
The unit nurse said they will keep us updated and I go to see mum straight after work but at the moment I feel I can't stay with her all day and I know some may think that's not great but for me I can't watch this. I know she is being loved and cared for and when the nurse calls with that call I'll be there.
I hope you have found comfort in the words on this forum as I have x

 

[Lunapup]

Hi @HopefulDaughter I wish I had words of wisdom but at the moment this is our situation too. Mum is so frail and last night the GP saw her and stopped her usual daily medication (memantine sertraline simvestatin and aspirin) and increased her pain patch. It's so hard watching our loved ones die slowly in front of us. At the moment mum spends a lot of time asleep but she also has moments of wakefulness and it's then I struggle as she can't communicate properly but keeps saying the same phrases over and over "I don't want to go" or "I do want to go" and it's just so hard to hear as I don't know what to say. I've got to the point now of keeping quiet when she says this then when she stops I'll waffle about my day, or chat to the carers last night she was calm while we were discussing whether cream or jam should go first on a scone.
The unit nurse said they will keep us updated and I go to see mum straight after work but at the moment I feel I can't stay with her all day and I know some may think that's not great but for me I can't watch this. I know she is being loved and cared for and when the nurse calls with that call I'll be there.
I hope you have found comfort in the words on this forum as I have x

Hi HartleyHugs, I’m sorry you are going through this horrible time. I lost my beautiful mum in the early hours of Tuesday morning. I stayed with her as long as I could but was not there at the end maybe I’m a coward but it was so distressing to watch her deteriorate over the past 7 weeks and her final hours. I thought I would feel relief but not yet, only for my mum. The only thing I can say is try to look after yourself as well. Sending hugs xx

 

[HartleyHugs]

Hi HartleyHugs, I’m sorry you are going through this horrible time. I lost my beautiful mum in the early hours of Tuesday morning. I stayed with her as long as I could but was not there at the end maybe I’m a coward but it was so distressing to watch her deteriorate over the past 7 weeks and her final hours. I thought I would feel relief but not yet, only for my mum. The only thing I can say is try to look after yourself as well. Sending hugs xx

Thank you @Lunapup I'm terrified of watching mum die and not sure I could cope but I guess only time will tell. I sometimes feel like I say the wrong thing when I say I'm not sure I can be there x

 

[HopefulDaughter]

Hi @HopefulDaughter I wish I had words of wisdom but at the moment this is our situation too. Mum is so frail and last night the GP saw her and stopped her usual daily medication (memantine sertraline simvestatin and aspirin) and increased her pain patch. It's so hard watching our loved ones die slowly in front of us. At the moment mum spends a lot of time asleep but she also has moments of wakefulness and it's then I struggle as she can't communicate properly but keeps saying the same phrases over and over "I don't want to go" or "I do want to go" and it's just so hard to hear as I don't know what to say. I've got to the point now of keeping quiet when she says this then when she stops I'll waffle about my day, or chat to the carers last night she was calm while we were discussing whether cream or jam should go first on a scone.
The unit nurse said they will keep us updated and I go to see mum straight after work but at the moment I feel I can't stay with her all day and I know some may think that's not great but for me I can't watch this. I know she is being loved and cared for and when the nurse calls with that call I'll be there.
I hope you have found comfort in the words on this forum as I have x

I’m sorry to hear this @HartleyHugs. Thinking of you, you are doing all you can - stay strong.

 

[what-to-do]

Hi @what-to-do. Thanks for replying. Sorry to hear about your dad. Do post on here - it helps a lot. Everyone is very supportive and people understand what you’re going through.

 

[Lunapup]

Thank you @Lunapup I'm terrified of watching mum die and not sure I could cope but I guess only time will tell. I sometimes feel like I say the wrong thing when I say I'm not sure I can be there x

Don’t feel pressure to do anything you are not comfortable with. My family could see my distress and quickly supported me to leave 3 hrs before mums passing. I comfort myself in the fact that I have cared and supported my mum for many many years and she knew I loved her dearly. Be kind to yourself your mum knows you love her. Xx

 

[what-to-do]

Thanks HopefulDaughter I shall. Strangely enough I was called by Dad's care home after I posted before to asked me in to discuss his end of life plan.
He's the only family I have left, aside my daughter who is unsupportive so I've done everything. His diagnosis only 6 months ago and no LPA in place so I've be climbing a mountain trying to navigate the care system and apply for a Deputeeship (still not granted). This time last year he seemed to have only MCA and wouldn't visit the GP (nor could I do anything about it). I feel so worn, going from one organisation to another in such a short space of time to handle whatever at that time.
A figment of himself now, being given water and encouraged with EnSure, he hasn't long. I'm sad and scared for the future, imminent and afterwards...tired and more importantly miss my Dad who means the world to me. I'm now making all the effort to play his favourite music, bring his photos. I do only hope I will be there for him at the end, otherwise it really will break me.