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

[Mamsgirl]

My poor SF is very confused and grumpy and starting to refuse food and fluids (thickened tea by the teaspoon still acceptable). When he can form the words he's told my Mum that he knows he's dying and wants to come home. While Mum's retirement unit isn't an option for palliative care, my house could easily accommodate him. Here's where I need every view I can get. Would it be a kindness or a cruelty to bring him home to my place? He's spent many happy hours there, and I know it's somewhere he feels at home. I'm not too worried about symptom control because pain is well managed with a three day patch, and we have a marvelous palliative care service where we live. It would also be much easier on Mum to stay with him for extended periods, which isn't the case in the CH, and is I think his main cause of distress. Does anyone have an opinion on this? Please be blunt if need be, I'm aware of only seeing the positives and need the benefit of TP's broad perspective.
Thank you, Toni.

 

[flowerpot]

Hi Mamsgirl, I would go with your gut instinct and if that's to have your father at your home I would do it. It will be hard work but worth it I'm sure. As you say it will be better for your Mum. Good luck xx

 

[Big Effort]

Hi Toni,

I know what my heart would say...... go for it.

But.
How does your SF know he is dying? Have a look at the forum and you will see that people who really are dying take their own time and there is no hurrying the process.

Just to give an example. Two years ago my mother's older sister was put on oxygen and went home to die (or so she told us). She called up all her important people, and goodbyes were said. She lay in bed for a long long time, still on oxygen. To cut a long story short, she is now still at home, spends less time in bed, and has gone back to gardening to while away the hours. By the way she is still on oxygen, but mobile, and very, very much alive.

I would get the guarded prognosis of experts to ascertain if death really is approaching, or you may be nursing a man for much longer than you think. In fact his time with you may give him a new lease of life.

Don't mean to be flippant. Just death doesn't come because we are ready for it. It comes when it is time and not a moment before.

Here is to you making the best possible decision for all concerned. Good luck, BE

 

[rajahh]

My own husband is terminally ill and it is my hope that he will die at home.

As you say visiting by your mother will be so much easier if your SF is home with you.

It will not be easy, but I am sure with the support of a palliative care service, it will be possible.

This is not to say CH palliative care is not a gentle way to go as well, but if the visiting is not so easy then your first thought is a good one.

Jeannette

 

[lilysmybabypup]

Oh Toni,
Why do I moan and bleat about my own problems, oblivious to the painful situations of all the others here? I'm sorry.

I wish I could give you an answer, so often it's a heart and head battle, isn't it? Are you able to tend to all his care? I'm not familiar with the way palliative care works in the home, how much time do they spend there? What if it continues for a very long time? As BE said, these things are such an unknown, the time is impossible to judge.

Sorry I'm not much help, it's what I think about my situation, is Dad close enough to be considering palliative care rather than stay in the nursing home? Who really knows? I hope you can make a decision that works for all of you.

Stephanie, xxx

 

[Padraig]

Home to die

As many on here will know from my posts I took my wife home from a NH against all advice. Yes I expected her to die and was told as much, plus it is writted in the medical diary that was maintained in our house. She was bedridden, incapable of speech and lost the use of her limbs. For a period of two weeks we had to have a rappid response team of nurses attend her. After that a pallitive care nurse visited to offer her services and like all other offers of help I turned it down. Nine months later I managed to take her out for daily rides in her wheelchair and had to support her head with one hand. As time passed her physical health improved and she survived a further four years.

The truth is, I was too selfish to share the caring with anyone else because she was my reason for living. While she was alive no one was to come between us.
Now I'm alone I and can just about care for myself and to-day has been a pain racked day.
I've been lucky because from the day I was born I was presented with challanges. This cancer one is tough. I'm waiting to join my wife but I'm not holding my breath as there might be one more surprise challange around the final bend.

I wish you the very best; you can do it with plenty of support.

 

[LYN T]

Hi Toni

I really don't know what to suggest-I certainly have no answers to your dilemma. I'm sure you will follow your HEAD and your HEART and make the right decision -but what a difficult decision that will be. I wish you all the best.

Padraig I know you don't look for sympathy but I'm sorry that your day has been filled with pain.You did such a magnificant job of nursing your wife you certainly don't deserve this extra burden.

Take care

Lyn T

 

[meme]

I think it would definately be a kindness to bring him home to yours. Given the choice we all would wish to die at home with our loved ones close.

 

[Mamsgirl]

Hi Mamsgirl, I would go with your gut instinct and if that's to have your father at your home I would do it. It will be hard work but worth it I'm sure. As you say it will be better for your Mum. Good luck xx

Thanks flowerpot. Gut instinct gets scary when it's a vulnerable person's welfare at stake, so mine appreciates the vote of confidence x

Hi Toni,
I know what my heart would say...... go for it.
But.
How does your SF know he is dying? Have a look at the forum and you will see that people who really are dying take their own time and there is no hurrying the process.
Just to give an example. Two years ago my mother's older sister was put on oxygen and went home to die (or so she told us). She called up all her important people, and goodbyes were said. She lay in bed for a long long time, still on oxygen. To cut a long story short, she is now still at home, spends less time in bed, and has gone back to gardening to while away the hours. By the way she is still on oxygen, but mobile, and very, very much alive.
I would get the guarded prognosis of experts to ascertain if death really is approaching, or you may be nursing a man for much longer than you think. In fact his time with you may give him a new lease of life.
Don't mean to be flippant. Just death doesn't come because we are ready for it. It comes when it is time and not a moment before.
Here is to you making the best possible decision for all concerned. Good luck, BE

Oh BE sorry, but your story made me laugh. I can just see the gardening/oxygen combo You're right of course BE about death running to its own timetable, and we're only looking at moving him when he's unable to move from bed and has stopped eating. That time I fear is close, but not here yet. SF was told seven weeks ago that without radiation to a laryngeal carcinoma, which he subsequently refused, he would live only two to three weeks. The tumour is noticeably larger and will rupture a nearby artery fairly soon. The tumour is competing with late stage dementia, and I just hope dementia wins. Thanks for your thoughts, Toni.

My own husband is terminally ill and it is my hope that he will die at home...This is not to say CH palliative care is not a gentle way to go as well, but if the visiting is not so easy then your first thought is a good one.
Jeannette

Thanks Jeannette. Sorry to hear your husband is so ill. I'm worried that my SF will suffer if I move him, even though that's what he wants. Silly I suppose.

 

[Padraig]

Book

BE,

You will recall that in another post you asked about one of my books. I submitted details at the end of my post, but they were deleted by those in charge.

Never mind, our son (I always refer to 'our' children my late wife and I as our) had just Emailed me with an attachmet of my Alzheimer's book in PDF form. I'll be happy to let you have it free, or anyone else who wishes, when I learn how to send it. I'm not interested in making money from it, I don't need to. I just wish to share all the information I gained in caring alone(and I mean alone) at home 24/7 for a number of years at the end stage.

 

[wetnosewheatie]

Hi are you ready to deal with what could be an unpleasant death? Sorry to be blunt but I witnessed my
Mums death from cancer in the hospice and I would rather have had her there with trained professionals on hand than me trying to muddle through

 

[beech mount]

I would do it,who knows what happens when we die but perhaps there will be someone
there to meet and thank you. . . . .
John.

 

[Mamsgirl]

Oh Toni,
Why do I moan and bleat about my own problems, oblivious to the painful situations of all the others here? I'm sorry.

I wish I could give you an answer, so often it's a heart and head battle, isn't it? Are you able to tend to all his care? I'm not familiar with the way palliative care works in the home, how much time do they spend there? What if it continues for a very long time? As BE said, these things are such an unknown, the time is impossible to judge.

Sorry I'm not much help, it's what I think about my situation, is Dad close enough to be considering palliative care rather than stay in the nursing home? Who really knows? I hope you can make a decision that works for all of you.

Stephanie, xxx

Hi Stephanie,
You're the last person to be oblivious to others! The opposite in fact, sending comfort and goodwill all over TP.
I'm waiting on a call back from the palliative care people to discuss the idea. If a nurse can visit three or four times a day to cover the medical side of things, and if pain is likely to stay under control (seems possible, hasn't been too painful), and if palliative care can set up in my front room at short notice, I can manage the comfort care side. A lot of "ifs", but worth exploring.
As I replied to BE, SF has a rapidly growing tumour in his neck that is going to impact on an artery very soon, though he seems to be suffering less from this than the confusion and distress the dementia causes. I've no good reason for thinking it but I just feel the dementia draining him away; he's fought cancer and heart problems with such determination and purpose, only dementia could make him this powerless. So, a long duration is unlikely
The sun's out this morning in Melbourne and I hope Sydney's putting on a sunny face for your father's first full day in his new residence. Looking forward to hearing how he got on last night.
Take care, and thanks,
Toni x

 

[Mamsgirl]

As many on here will know from my posts I took my wife home from a NH against all advice. Yes I expected her to die and was told as much, plus it is writted in the medical diary that was maintained in our house. She was bedridden, incapable of speech and lost the use of her limbs. For a period of two weeks we had to have a rappid response team of nurses attend her. After that a pallitive care nurse visited to offer her services and like all other offers of help I turned it down. Nine months later I managed to take her out for daily rides in her wheelchair and had to support her head with one hand. As time passed her physical health improved and she survived a further four years.

The truth is, I was too selfish to share the caring with anyone else because she was my reason for living. While she was alive no one was to come between us.
Now I'm alone I and can just about care for myself and to-day has been a pain racked day.
I've been lucky because from the day I was born I was presented with challanges. This cancer one is tough. I'm waiting to join my wife but I'm not holding my breath as there might be one more surprise challange around the final bend.

I wish you the very best; you can do it with plenty of support.

Padraig your story is so inspiring, four years of life snatched from the grasp of death is nothing short of a miracle and probably only achievable with the sort of fierce love and devotion you describe. I'm so sorry you're ill, and hope you receive all the care and attention you deserve. Thanks for your encouragement, all the best, Toni.

 

[Mamsgirl]

Hi Toni

I really don't know what to suggest-I certainly have no answers to your dilemma. I'm sure you will follow your HEAD and your HEART and make the right decision -but what a difficult decision that will be. I wish you all the best.

Take care

Lyn T

Hi Lyn,
Before I can consult head or heart I need to work out if I'm Arthur or Martha!
These things are so unpredictable and he seems to be declining so quickly.
Thanks, Toni

 

[Mamsgirl]

I think it would definately be a kindness to bring him home to yours. Given the choice we all would wish to die at home with our loved ones close.

Yes meme I think you're right. When my time comes I know I want to be wherever's closest to pain relief, and I don't want to deprive my SF of this, but I want him where he feels secure. Guess I'm looking for guarantees that just aren't there. Thanks for you kindness x

 

[Nanak]

Hi
for what its worth I would say let him come home.
If it were just dementia related well, that ends up being "how long is a piece of string" but with the tumour involved - and if you can manage - I doubt he has too long.
There will be help available, just be aware it will be very draining and upsetting for you, but you seem to have thought of the downsides.
Good luck
Nanak (Kim)

 

[Mamsgirl]

Hi are you ready to deal with what could be an unpleasant death? Sorry to be blunt but I witnessed my
Mums death from cancer in the hospice and I would rather have had her there with trained professionals on hand than me trying to muddle through

Hi wnw,
Sorry for what you went through with your Mum, nothing worse than watching a loved one suffer, and I dread this.
Don't apologize for not ignoring the down side wnw, I really need to consider exactly that. You have no idea how prescient your comment is.
The person I was put through to at the palliative care service told me to go to their website (Really? As though I wouldn't already have done that), because basically that's all the information available! Recovered from the uselessness of the telephone contact enough to say I have questions the website doesn't address. At this point the "Intake Worker" admits she is administrative and I need to speak with a medical person, in a tone that suggests I ought to have known better. The nurse will ring me back. Feeling underwhelmed I wait for a call that comes nearly two hours later while I'm driving.
So right now I'm having visions of my SF's pain spiraling out of control while I make hysterical calls to the palliative care service. Nobody could accuse me of being sensible or clear headed!
Thanks for your kindness,
Toni x

 

[Mamsgirl]

I would do it,who knows what happens when we die but perhaps there will be someone
there to meet and thank you. . . . .
John.

Thanks John, that's a lovely thought, Toni x

 

[Mamsgirl]

Hi
for what its worth I would say let him come home.
If it were just dementia related well, that ends up being "how long is a piece of string" but with the tumour involved - and if you can manage - I doubt he has too long.
There will be help available, just be aware it will be very draining and upsetting for you, but you seem to have thought of the downsides.
Good luck
Nanak (Kim)

Hi Kim,
I appreciate your perspective and the reminder we're in for a draining and upsetting time. Feeling very nervous and emotional, and wondering why these decisions come when we're at such a low ebb. My SF does have an end of life plan which basically says no hospital, palliative care only in the CH, but now he's changed his mind I'm trying to sort through issues I hadn't anticipated.
Thanks for your help,
Toni x