Coming home to die...experience and opinions please.

[Nanak]

It will be hard.
The thing is its not set in stone and if you get to a stage where it gets too much then it may be the time for him to go into hospital.
It is all very uncertain which makes the decision harder.
I admire you, you must care for him very much
Nanak (Kim)

 

[Jessbow]

What do the palliative care nurses at the care home/hospital say - do you have their support? They are prob the best ones to hand you over to community service.

Difficulty is, at home unless its ''right at the end'' you are not going to have someone 24/7. Can you do all that needs doing in a practical sense? Turn him, wash him, medicate him?

My darling dad always wanted to die at home, I wanted to do it, but had to concede, it was very VERY hard and he died in hospital

 

[Izzy]

My mum died at home two years ago tomorrow. She never went into hospital. During her last two weeks we had district nurses who came and washed and turned her and checked her syringe driver. They came three times a day. The doctor came on request. Sometimes daily. We had Marie Cure nurses who came and sat with re from 10pm to 7am so we could sleep. All in all I feel we had wonderful support to allow mum to die at home.

 

[Butter]

From your post, I think you are in Australia? I am not sure what the provision is in Australia - and what your options are. I believe it is totally different from Scotland, and fairly different from England.

I think a lot depends on what support you would get at home. In the UK there are a number of systems in place to help people die at home. I won't post them here unless it turns out you are under the UK NHS.

 

[mrsannieb]

Hi Toni

I think it depends on the level of support you can get. My Dad was hospitalised after a fall. We were told he was nearing the end of his life and that he could have continuing care funding to move to a nursing home, hospice or care at home. Both he and my Mum wanted him home and I have to say he had brilliant care from the NHS - palliative carers 3 times a day, district nurses and doctor every day and constant reassurance that if Dad was in any pain to call the nurses right away. Dad died very peacefully at home last week with Mum and I beside him. Hope it all works out as well as possible in these awful circumstances for you.

Anne x

 

[Mamsgirl]

What do the palliative care nurses at the care home/hospital say - do you have their support? They are prob the best ones to hand you over to community service.

Difficulty is, at home unless its ''right at the end'' you are not going to have someone 24/7. Can you do all that needs doing in a practical sense? Turn him, wash him, medicate him?

My darling dad always wanted to die at home, I wanted to do it, but had to concede, it was very VERY hard and he died in hospital

It all feels a bit cloak and dagger at present Jessbow. Mum doesn't want to tell the CH until something's sorted out with palliative care, I think for fear that they'll stop looking after SF if they know he's leaving (VaD, once something's in there's no arguing), so can't enlist CH's help <sigh>

In Australia we have visiting palliative nurses but unfortunately not 24/7 as I've read about in the UK. Lucky isn't the right word here, but you know what I mean. Assuming we set up with a hospice bed so turning him isn't necessary, and the nurses take care of medication I'm confident I can manage....pretty confident....scared if I'm honest.

Jessbow what was the hardest bit? If you don't mind sharing that. Going back to hospital is SF's biggest fear so I'm very reluctant to put him in that position. Was your Dad still aware of his surroundings by the time he was transferred?

It breaks my heart to think of what a great cost it was for you to "concede", you must have been worn out. Thanks so much for putting your difficult experience forward to help another family. Take care, Toni

 

[Mamsgirl]

My mum died at home two years ago tomorrow. She never went into hospital. During her last two weeks we had district nurses who came and washed and turned her and checked her syringe driver. They came three times a day. The doctor came on request. Sometimes daily. We had Marie Cure nurses who came and sat with re from 10pm to 7am so we could sleep. All in all I feel we had wonderful support to allow mum to die at home.

Oh Izzy I'll be thinking about you tomorrow, hope you're as ok as possible. The palliative service sounds exemplary but nothing of that order is available in Australia, apart from regular visits from a nurse. So glad you felt supported at such a difficult time, Toni x

 

[lilysmybabypup]

So many unknowns, so many gaps. Why is this made so hard for people dealing with such a huge and stressful situation. All you want is to give your SF the love and comfort of home. I really understand that, it's a matter of dignity.

How is it that there seems to be no overnight services anywhere in this country, unless you pay handsomely? If you could be sure of that essential support you could decide easily.

I really wish I could help you because I sense the despair you're feeling, very similar to my own. I hope you can get the palliative support when you need it, but I think you honestly need to decide whether you're up to the task. I send you interstate hugs and lots of crossed fingers.

Stephanie, xxx

 

[Mamsgirl]

Too late to come home.

Yesterday morning the CH nursing unit manager rang to say SF was refusing food and meds and was anxious about being alone. Dropped everything and went in. Poor man was barely able to speak, agitated and groaning yet denying he had pain!

After a hellish night of distressed restlessness barely touched by the pain meds, the morning shift found the drug approval went, wait for it, over the page! SF's doctor had written up a comprehensive order three weeks ago, and we now have good symptom management. As the end is imminent it would appear we've missed the chance to move him.

Seems it's always later than you think.

Thanks everyone for your thoughts and comments.

Toni x

 

[Butter]

Poor man. I am so sorry. That is not a good story. I do hope he is comfortable now.

 

[lilysmybabypup]

Toni, hardly know what to say, thank goodness the meds debacle was rectified and he's now comfortable. I just wish you all a peaceful time with beautiful music, candlelight, flowers, and the love, kindness and warmth of family.
Take care, you're in my thoughts.
Stephanie, xxx

 

[meme]

he is getting proper pain relief that is a blessing...

 

[lilysmybabypup]

Hi Toni, just letting you know you're in my thoughts, along with your dear SF.

Stephanie, xxx

 

[Mamsgirl]

Twelve hours ago, and a day or two before expected, my dear stepfather slipped from this life with a gentleness and dignity befitting the bravest man I've ever met.
Thank you, every one, for your kindness and support.

 

[angecmc]

So sorry to hear this mamsgirl, my condolences to you and your family, take care of yourself xx

Ange

 

[lilysmybabypup]

Oh Toni, so sorry for your loss, I hope there is some vestige of comfort in knowing he is freed from all that bound him. So glad it was a quiet and dignified passage, I'm sure he was rightly proud of his dear one.

Sending you huge hugs,
Stephanie, xxx

 

[LYN T]

Oh Toni

So sorry to read your very sad news.

I'm glad it was peaceful at the end.Another bright star in the sky tonight.

Take care

Love from Lyn T

 

[turbo]

Hello Toni, I am sorry to read your sad news about your stepdad. My sincere condolences.


turbo

 

[Izzy]

I'm so sorry to hear of your step dad's passing. Your love for him shone through your posts. Sending my condolences.

 

[Pennie]

Oh dear, how sad after all your efforts, but thank goodness he has been released.

Please accept my sincere condolences xx