How much longer?

[JackyJ]

My mum has been ill for well over 15 years, she has been on end of life for the past year, she has been in bed for 6 months, she hasn’t spoken words for over a year, her skin is so delicate she can’t be moved, she can’t do anything herself, she’s feed puréed food, her drinks are thickened, she has a chest infection for the second time, and we are not giving her antibiotics but she fought the last infection.

Today when I visited she was gurgling with saliva, the nursing home gave her an injection to dry her fluids. She is so disturbed, just growls and makes horrible noises, she is being given injections to calm her down.

It is so horrible, mum would hate to be like this, and now I’m just waiting for her to die..... I love her so dearly and I can’t stand to see her suffer, but when will this hell finally end??

 

[SylviaB62]

My mum has been ill for well over 15 years, she has been on end of life for the past year, she has been in bed for 6 months, she hasn’t spoken words for over a year, her skin is so delicate she can’t be moved, she can’t do anything herself, she’s feed puréed food, her drinks are thickened, she has a chest infection for the second time, and we are not giving her antibiotics but she fought the last infection.

Today when I visited she was gurgling with saliva, the nursing home gave her an injection to dry her fluids. She is so disturbed, just growls and makes horrible noises, she is being given injections to calm her down.

It is so horrible, mum would hate to be like this, and now I’m just waiting for her to die..... I love her so dearly and I can’t stand to see her suffer, but when will this hell finally end??

I feel

 

[SylviaB62]

I feel for you as we are constantly thinking the end is coming for our mum but she fights it. No end seems in sight and I also worry she is suffering. It sounds like your mum is being given the best of care and that's important. I understand you are waiting for the inevitable and I cannot answer your question but just big hugs and I hope the release comes soon as it is a long goodbye bye x

 

[Scouts girl]

My dear mum too is on end of life care and I just pray that her struggle with this awful illness will end soon. I am heartbroken to watch her decline each day and just wonder how much longer she can go on like this. She is being well cared for and I know the care home has a duty of care but, what is the point of prolonging her life. I just wish she would pass peacefully in her sleep and end this seemingly endless journey. No one can understand the sorrow this brings and it just seems like a never ending bereavement.

 

[JackyJ]

I feel for you as we are constantly thinking the end is coming for our mum but she fights it. No end seems in sight and I also worry she is suffering. It sounds like your mum is being given the best of care and that's important. I understand you are waiting for the inevitable and I cannot answer your question but just big hugs and I hope the release comes soon as it is a long goodbye bye x

Hi Sylvia, I’m so sorry for you also. Our mums certainly have fight, but like you worry that she’s suffering. The doctor is very supportive and felt treating her illness was putting off the inevitable, but hope she’s not in any pain.

Big hugs to you, let’s hope they find peace soon x

 

[JackyJ]

My dear mum too is on end of life care and I just pray that her struggle with this awful illness will end soon. I am heartbroken to watch her decline each day and just wonder how much longer she can go on like this. She is being well cared for and I know the care home has a duty of care but, what is the point of prolonging her life. I just wish she would pass peacefully in her sleep and end this seemingly endless journey. No one can understand the sorrow this brings and it just seems like a never ending bereavement.

Hi sorry you are going through this too, every time I see mum I tell her she can go and everything is fine, but she keeps going.

I totally agree about prolonging the inevitable, why why? It’s so unfair and not the dignified end they deserve its horrific. I just pray it will be soon.
Big hugs to you.

 

[Scouts girl]

Thank you JackyJ. My thoughts are with you too. Sending hugs back xx

 

[Peachez]

How very sad for you. Take one day at a time, it does sound like she is well cared for, which is all you can do at this very painful stage. I used to tell myself that "this too shall pass".
Sending love and strength. xx

 

[JackyJ]

How very sad for you. Take one day at a time, it does sound like she is well cared for, which is all you can do at this very painful stage. I used to tell myself that "this too shall pass".
Sending love and strength. xx

Oh thank you that means so much x

 

[JackyJ]

So we’re still hanging in there, mum was peaceful today at the NH, I decided to read to her, a book she bought me years ago and made me promise I would read. Well I never got round to reading it, a sloppy Christmas story. So I read to her and I really think it gave her some comfort, she obviously had no idea of what I was saying, but I think she liked to hear a voice.

The NH manager (who is lovely) doesn’t think it will be long, so dad is visiting tomorrow - he has advanced Parkinsons and lives in a CH. so tomorrow will be a big day and I’m being very selfish, I will finish the book then get Dad. I just want the last previous days with her, without sharing, and Dad is so demanding and needs care himself. Oh I hope it’s not too long and mum finds peace soon.

 

[Scouts girl]

I got called into mums care home yesterday morning to say that mum had deteriorated further and following a visit from her doctor was told that it would be days until the inevitable happened and that the family should say their goodbyes. All very heartbreaking and spent an exhausting day with her just waiting, and talking to her constantly telling her that I loved her and it was okay to be with dad now. I am sure she could hear me as they say hearing is the last sense to go. I hope she can. I had to come home last evening as felt so tired but guilty that I couldn’t stay any longer. I am wide awake just waiting for the phone to ring. How do we cope with these last days. I will be at the care home with mum again tomorrow and pray now that the end will be peaceful and quick. I just hope I am there with her when she does go.

 

[canary]

(((((((((hugs)))))))) @JackyJ and @Scouts girl
It sounds like you are both facing the last long vigil.
Hearing is indeed the last thing to go, so talk to them, read to them, play their favourite music.
Time seems to extend to eternity while you are waiting and sometimes it seems amazing how long they can hang on, but it will be over soon.

Holding your virtual hands

 

[Scouts girl]

Have been with mum again all day today as got called again early this morning to go to the care home as her breathing had become gurgly and very shallow and thought it would only be a matter of hours. However, she is still with us and my brother and I have just come home for a rest. I am so exhausted both physically and mentally and just don’t know how she is hanging on. I will be on tender hooks again tonight waiting for a call but just wish we knew how long this vigil will last. My fear is that I will not be with her at the end but can only hope that the end will be very soon. Thank you for your thoughts. Hope you are ok JackyJ. Xx

 

[Amy in the US]

All I can do is send many virtual hugs and kind thoughts to all of you enduring this vigil.

(Please try not to reproach yourselves if your loved one/PWD slips away when you are not there. It does happen and you are not to blame.)

 

[malengwa]

We are in the same position. Mum is occasionally awake but won't drink and hasn't eaten for 3 days now. She is per thin on her hands and starting to look a bit yellow. I'm going to visit tomorrow as I don't live nearby. Each time I see her I say goodbye as if it's the last time, and every phone call is 'is this the one'
it's tough and somehow harder at this time of year. I lost my best friend at hristmas. I've considered just going up and staying there with dad but think that's hard too. Especially if mum keeps going. Work partly helps keep me sane. I'm not sleeping and im irritable and blubbing at every moment.
This too will pass is a very good thought.

 

[albajackk]

I remember my Nana being like this. It’s a horrible waiting, like nothing else. Cherish these last hours with her, hold her as long as you can, you’ll be so glad you did x

 

[JackyJ]

Hi mums still with us, the gurgling is really bad but with medication she’s calm and sleeping most of the time. I’m on book 2, but it seems to help, she goes very quiet really calms down, it’s nice to think it’s of done comfort.
I’ve not been called by the NH but everyday I visit, so I suppose the dead call might come at some stage. I started to believe she was getting better as she was so quiet, but the nurse said it’s because she is so medicated.
Scouts girl and malangwa my thoughts are with you both, but it’s a comfort to speak with you. I’m lucky as I’m not working at the moment so I get to be with mum most days. But I did have a dreadful day on Tuesday, I feel so lonely. Does anyone else feel this?

Love to you all

 

[Scouts girl]

It is so hard the waiting for the inevitable to happen. When I got the call from the NH Tuesday night to say mum had passed away, I just felt numb and really couldn’t believe she had gone until I arrived at the NH with my brother. It just felt like a dream and that I would wake up and she would still be with me. I am so full of mixed emotions at the moment, such sadness that she is gone but relief that her suffering with this awful illness has ended for her and she is now at peace. I can’t think that I will never see her again. She was a wonderful mum as well as my best friend. It is such a comfort for you JackyJ to be able to spend this time with your mum. Although I was not there when mum did pass away, only leaving the NH a couple of hours earlier as I was so exhausted, I am so grateful that I did spend precious time with her and was able to tell her how much we all loved her and the family were able to say their goodbyes. My thoughts are with you Jacky. Xxx

 

[malengwa]

JackyJ yes I feel quite lonely at times even thought my hubby is a complete rock. My brothers visit mum but do nothing else. I've tried to raise the funeral conversation with dad but I know he doesn't want to think about that yet as we have no plan in place. The world looks different when you are tired and can't sleep and for me, far away. Every time the phone goes it's 'is this the call'. I've agonused over taking time off work just to be there every day but work is keeping me sane and giving me some normality.
Yes gets keep chatting.
I saw mum yesterday a d she was the most comfortable I've seen her in a while. She even managed some smiles and blew me a kiss as I was leaving, as we have always done. The catheter has been removed and that is better for her although she isn't passing much because she is barely drinking.. I got her to have half a small cup of tea.
Xx to those going or those recently bereaved.
This too will pass.

 

[JackyJ]

Oh Scouts girl I’m so sorry you’ve lost your mum, but relieved she has found peace. Remember the good times and try to forget the recent agony’s, but I’m sure she’ll be looking down on you with love knowing you did your best.

Everyone’s told me they often pass when we are not there, almost like it’s a private matter, slip away while know ones watching.

I did have a melt down in the week, cried masses, my poor husband didn’t quiet know what to do, he was on his way out the door to work. So he text everyone asking for them to be aware I was not good. Hence a flurry of friends and family calling. Unfortunately they have all become used to me running backwards and forwards to visit mum, to them it’s become normal and they’ve stopped asking.

So today my son visited with me, he brought his wife and 18month old son, they thought mum might like to see them. It was a lovely gesture but she’s so drugged up in a false sleep, she isn’t aware of anything now. All I can do is stroke her face and hold her hand, But she looked calm and peaceful.

Hopefully mum will pass peacefully soon and I can start to grieve.

My thoughts are with you xxx