End of life in hospital

[Karen22]

I've been told bluntly today over the phone that dad will die soon. Last Monday he seemed a lot better but over this weekend he's been, what I think now is, delirious. He's not eating or drinking due to him being on thickened drinks and pureed food. This is how my mum went as she too hated thickened drinks by the SALT team and spat it out. The ward dad is in is horrible and I don't feel able to talk to the staff now as have tried over the past few days. I can't get in to see dad today and can only go briefly as it is due to my own health problems, and my husband's. I don't know what to do now and feel deeply conflicted. I know dad is very frail now but only a few weeks ago he was talking and still recognises me even now.

Karen

 

[canary]

Im sorry you have been told in such a blunt way.

People with dementia can go down quite quickly at the end but sometimes they can still do a lot of things even though their bodies are shutting down and they are actually dying.

Mum could talk and recognised me right up till the end. I have a photograph of her with her great-grandson and they are both banging teaspoons on the table and laughing. When this photo was taken mum had been placed on palliative care for over a week, she hadnt eaten or drunk anything at all for 12 days as her body was shutting down, and 5 days later she had passed away.

Do go and get to see your dad if you possibly can as I think you may regret it if you dont. You dont have to stay long - just long enough to say everything that you need to say.

 

[Kikki21]

@Karen22 i’m sorry you have been told this information bluntly. Maybe you need to speak to someone in PALS or the palliative care team. If your dad is still on a ward then maybe it is worth considering to have him put in a side room but you don’t have to. I felt my mum was better on the ward so she could still see/hear people around her. Maybe that helped her live longer.... I felt if she was in a side room on her own then she might get forgotten. I hope you manage to get to see your dad. Xx

 

[Karen22]

Dad passed away this morning. We got there in time fortunately. He had been in a side room due to having MRSA, he much preferred to be with others though. I couldn't go in to see him every day due to our own health and energy problems and I may regret that. The last time I was in was on Monday when he was very distressed due to too much fluid which had accumulated all over his body including his lungs. He was on oxygen and coughing regularly as he wouldn't allow the nurses to help clear his airways. I wish I could have done more but we have been operating at the maximum of our strength for so long. The hospital was half an hour away and there was nowhere for me to stay even if I felt I could. Dad had his eyes open when we got there this morning but was only taking shallow breaths. I said what I needed to say and told him to have a sleep and we would be there. I think he heard me as he slowly closed his eyes before his breathing stopped. There is so much to process now and such a void even though it will be a relief as well in part.

 

[canary]

Im so sorry for your loss @Karen22 but I am glad you managed to be there for him at the end.
Im sure that you did everything possible, so do not feel guilty about anything.
(((((((((((((((hugs)))))))))))))

 

[Bunpoots]

My condolences @Karen22

I didn't see my dad as much as I feel I should have in the last few days. I'd been ill with a cold which I didn't want to give him and then he died unexpectedly.

You got to say goodbye and I'm sure your dad knew you loved him and did your best x

 

[Karen22]

Im so sorry for your loss @Karen22 but I am glad you managed to be there for him at the end.
Im sure that you did everything possible, so do not feel guilty about anything.
(((((((((((((((hugs)))))))))))))

Thank you. I'm sure I will be okay with time, it's just the initial shock and feelings/thoughts even though we have been preparing ourselves for this for so long.

 

[Karen22]

My condolences @Karen22

I didn't see my dad as much as I feel I should have in the last few days. I'd been ill with a cold which I didn't want to give him and then he died unexpectedly.

You got to say goodbye and I'm sure your dad knew you loved him and did your best x

Thank you. Yes, I did tell him that I loved him this morning even though he never told me and at times I doubted he did (lots of things have gone on over the past few years). He was so buttoned up in his relationship with me and yet smiled at others. However, he did wait for us to go to the hospital and listened to me which I have learnt is the last sense to go - something I wish I'd known when my mum died in 2014. Such a lot to process but I know it's early days.

 

[lis66]

So sorry for your loss Karen22 I understand how you feel about not being told by your dad that he loved you as im sure he did ,my dad has never told me he loves me and it's quite hard to understand ,he doesn't have ad my mum does take care xx

 

[Kikki21]

@Karen22 so sorry for your loss & be kind & gentle to yourself now.
It is awful knowing that someone is going to pass & then when they do, it feels very strange & you go through so many emotions but you were there for your dad. I wasn’t there when my mum passed but we had been at her hospital bedside for hrs every day & I think she tried to pass at one point but it wasn’t her time just yet & I think she knew that I didn’t want to be there after being there when my dad passed xx

 

[LynneMcV]

I am sorry for your loss @Karen22. Please don't be hard on yourself, you did all that you could within your own personal circumstances. I am pleased that you managed to get there and say goodbye to your dad and tell him that you love him.

It doesn't matter how long we have known that this day will come, nor how prepared we think we are, it is still heart-breaking and a shock when the time actually comes.

Wishing you strength at this sad time.

 

[Karen22]

Thank you everyone for your kind words and support.
I'm trying to keep busy, perhaps to stop myself thinking too much. I feel all over the place. I've been tied up with my dad's life for so long since my mum died in 2014. All his lies and disregard for my grief when he was seeing and going off with his woman friend of longstanding, and then having to take responsibility for looking after him after he stopped being able to look after himself. Then all the hospital visits and rushing up to see him numerous times when he fell ill, as well as our regular visits and clearing out his bungalow. Now I have to process all that has happened, all the hurt, anger, sadness, frustrations and grief at what happened to both my dad and to my lovely mum. It's so hard but I will get there in time. My husband and I have both pushed ourselves far more than we should considering our health. We need to start to put ourselves first now, if I can remember how to do that. The trouble is my dad came first all through my life, with my mum too, so it is a hard habit to break.
Xx

 

[Karen22]

I don't think I put on here that dad came off end of life care last Friday and I was told his chest was clear so I wonder if he had a temporary reprieve as when I saw him that day he had begun to eat and drink again and was talking to me and alert. That's why it was so hard to see on Monday that he was then a lot worse again, I think looking back his kidneys were failing as well as his heart. Such a lot to understand and come to terms with.

 

[Kikki21]

I don't think I put on here that dad came off end of life care last Friday and I was told his chest was clear so I wonder if he had a temporary reprieve as when I saw him that day he had begun to eat and drink again and was talking to me and alert. That's why it was so hard to see on Monday that he was then a lot worse again, I think looking back his kidneys were failing as well as his heart. Such a lot to understand and come to terms with.

My mum has a temp revival after they stopped giving her antibiotics & fluids which were just not working. She was eating & drinking & talking that day & it was very hard to come to terms with that as it seemed that going onto the syringe driver meds bought about that change but it was very temporary. Her kidney function was battered by that time & the next day she was back to being very quiet & not wanting much food or drink. Her revival nearly broke me because I thought that I wouldn’t see her like that again & then you start wondering if the right decision has been made. However she also had aspiration pneumonia & the only way anything was going was down into further decline. She near enough lost consciousness in her final days. It was all very sad but we did spend many hours by her bedside & I told her all that needed to be said. X

 

[Karen22]

My mum has a temp revival after they stopped giving her antibiotics & fluids which were just not working. She was eating & drinking & talking that day & it was very hard to come to terms with that as it seemed that going onto the syringe driver meds bought about that change but it was very temporary. Her kidney function was battered by that time & the next day she was back to being very quiet & not wanting much food or drink. Her revival nearly broke me because I thought that I wouldn’t see her like that again & then you start wondering if the right decision has been made. However she also had aspiration pneumonia & the only way anything was going was down into further decline. She near enough lost consciousness in her final days. It was all very sad but we did spend many hours by her bedside & I told her all that needed to be said. X

My mum had aspiration pneumonia too after her swallowing was affected by Alzheimer's. I knew her better than my dad and knew she wouldn't have wanted to go on as she was so it was an easier decision to make to withdraw meds. She too became a little better when everything was withdrawn but then was asleep or unconscious for most of the week leading up to her death. Apart from the Saturday afternoon before she was taken off fluids when she couldn't breathe properly, her death was more peaceful and there was less of a struggle than for dad. Dad fought to the end which was harder to see and I fear struggled against the end more.
Karen

 

[Kikki21]

My mum had aspiration pneumonia too after her swallowing was affected by Alzheimer's. I knew her better than my dad and knew she wouldn't have wanted to go on as she was so it was an easier decision to make to withdraw meds. She too became a little better when everything was withdrawn but then was asleep or unconscious for most of the week leading up to her death. Apart from the Saturday afternoon before she was taken off fluids when she couldn't breathe properly, her death was more peaceful and there was less of a struggle than for dad. Dad fought to the end which was harder to see and I fear struggled against the end more.
Karen

Bless you, it is so awful to see nevertheless. My dad went very suddenly compared to my mum. The last night before he died, he was still laughing & joking. The next morning, I got a phone call from the hospital saying he had gone into a coma & to come to the hospital so me & my mum went & a few hrs later he passed. I still don’t know whether it had been expected like that or not. My mum fought for just over a week on the syringe driver.

 

[Karen22]

Bless you, it is so awful to see nevertheless. My dad went very suddenly compared to my mum. The last night before he died, he was still laughing & joking. The next morning, I got a phone call from the hospital saying he had gone into a coma & to come to the hospital so me & my mum went & a few hrs later he passed. I still don’t know whether it had been expected like that or not. My mum fought for just over a week on the syringe driver.

That must have been a nice memory to have of your dad - laughing and joking, and then going into a coma so I hope he didn't suffer. It makes the passing easier to bear in a way. I remember seeing hot air balloons in a beautiful, blue, summer's evening sky when my mum was taking her dying breaths and imagined her spirit floating away with them.
Karen

 

[canary]

I remember seeing hot air balloons in a beautiful, blue, summer's evening sky when my mum was taking her dying breaths and imagined her spirit floating away with them.

Thats a lovely picture Karen
xx