Overnight hospital carer for dad with parkinsons

Hi my dad has advanced Parkinson which the doctors say is end-stage. I look after my dad all night in hospital to give him extra care and for him not to feel scared. Anyone else in similar Position? Feels quite isolating and hospital bit scary at night.

Hi Sean,
You must be exhausted. I’ve done 24 hour shifts supporting S in hospital before. Absolutely kn*ckering. Would it be possible for your Dad yo move to a hospice, he would be much more comfortable there and you would both receive better support.


Yes indeed, and a lot ‘nicer’ too than hospitals.

And, of course, designed to ease, as much as possible, both physically and emotionally, the transition from life to death…

Or, perhaps, admission to a nursing home that would do the same?

Hospital is ‘no place’ for the seriously ill…

Doctors saying no hope bug my family are clinging on. He’s lost loads weight, swallowing problems and is on oxygen. We are hoping any day now he will start to gain weight and require less input in the meantime he’s deteriorating. Very long hours sitting in the dark ward watching dad. He frequently coughs and needs suction to clean phlegm from his mouth. I pray he ll make it. Throwing my Alki to his rehabilitation.


Whilst I understand that there is always hope, there is also the need to plan. Have your family considered what they would do if the worst happened? Which funeral director would you use, for example. I know it’s awful to think about, but you need to. My father in law didn’t, when MIL was ill in a nursing home, FIL wouldn’t even give the home his phone number, but we had to give ours! As a result, I came home to see an answerphone message, there was one for my husband. “Your mother has died. What do you want us to do with the body?”.
When my mum was very, very ill, I contacted the funeral directors we’d used for my husband. I explained the situation, made arrangements, told the home who would deal with everything. Believe me, this is so much less traumatic.
Please don’t bury your head in the sand. Hope that you won’t need their services for a long time, but at least get something planned. (Could one of the other family members take control of this?) Dad might find it soothing to have some of his favourite music playing at times.

I agree with BB. Like it or not, you must entertain the possibility that the end of his life is approaching for your father. It is time, you see, not to think of yourselves, but of him.

You must now do what makes things easier for HIM. And one of the things we, the living, have to do for the dying is to give them ‘permission’ to leave us.

No parent ‘willingly’ leaves their child. No parent could bear to ‘abandon’ their child, however old that child is.

But there comes a time when the child must stop ‘clinging’ to the parent, for whatever reason - because we can’t bear to lose them, or we can’t bear them to die, ie, we want THEM to go on living - and be prepared to ‘send them on’.

Just as the dying must, at some point, ‘let go’, so we, too, must ‘let go’.

This is an infinitely important time in your life now. You are ‘keeping vigil’ by the man who fathered you, and now is the time to reflect on all that he did for you in his life, and in yours so far, of the legacy of love that he will be leaving you, that you, in your turn, will, one hopes, pass on to the next generation. This is the time for saying to him everything that you want to say to him, that is in your heart, and to show and tell your love for him, and your thankfulness.

In the long reaches of the night, you are making your ‘quiescence’ with him - a time of such bonding, that will never break, and that will last YOU all the remainder of YOUR life. You will remember and cherish this time with him, in the years to come.

But, above all, ‘let him go’…if his time has come, it has come, and you will be the one to accept that. As does he.

He knows you are beside him, and that he is ‘passing the baton of life’ on to you. It is what we all shall do, when our time comes.

Thanks for your replies. It’s really lonely in the ward in the dark with the beep of machines and the snoring of others yet lots of Dramatic noises as busy people walk past. Awesome to listen to what others think and felt like the loneliness had been dissolved a little bit. The thing is we need dad. I need him here for Christmas, I need him nagging me to get married and to learn how to drive. Mum needs him at home making a mess and taking over the remote control. My brothers and sisters need him to attend their weddings or to disapprove of how they spend their money foolishly. He has to get better now-he must. We really far too busy for him to be spending so much time being poorly. He must now get Better! Mums knitting him a jumper that he must wear else she ll be upset.

Hi Shaun
I am sorry to hear that your Dad sounds as though he has reached End Stage of Life, he will stay with you once he has passed and still be offering up his words of wisdom in your ear. I am sure his spirit will be at any future family weddings.
Please re read Jenny’s post who writes so beautifully on such a hard subject. Sometimes we just have to accept the inevitable. Perhaps if you google “end of life” it will help you understand the swallowing issues and that Dad may be slipping away.

Your post is very heartfelt. I feel you will quickly reach another stage and accept that your Dad may need your permission to pass peacefully, and perhaps you could tell him that you will miss him dreadfully, but will manage and cope, knowing he cared for you so much. I understand you need him, want him as he was. In your heart, do you really believe that will be the case?

Shaun, those we love NEVER leave us. They can’t - they just go on loving us, and we go on loving them.

Please find the poem - ‘Death is nothing at all’…it describes it so well. That sense that they are just ‘there’…in another room…

I promise you it will feel like that, once the first pain has eased (and it WILL ease…you can’t believe it now, or when you feel it, but it DOES ease…mellows to a softness that bathes us in fond fond memory that wrap us around as gently as a baby’s fleece wraps it)…

And yes, you are right, we do ‘need’ them to be with us still, in the midst of life, and in their way they will be…I can still, whenever I am doing any handwashing of woollens, hear my mother’s voice reminding me to make sure I rinse it all PROPERLY …and she died over a quarter of a century ago.

And I constantly hear my late husband disagreeing with me!!! :slight_smile:

Grief is, yes, the very worst, but it is not as strong as love. Love is stronger than anything. Stronger than death.

You will take your father, and your love with him, with you for the rest of your life, and he will be there, ready to receive you, when your time comes, and it is your son or daughter sitting beside you, as you slip from life into what is to come…

Really awesome to get really nice kindness and support quite amazing really. The doctors asked dad if he wanted to live. I thought that was quite shocking. I mean I thought doctors were a posed to help people get better. Dad said “Yes” he knows we need him back asap-still very scary though.

Shaun, it sounds brutal to us, but doctors really need to hear the answer to this. For many patients, end-stage is something that brings them towards that ‘letting go’ point that we spoke of earlier. Sometimes, you see, the ‘simple process’ of KEEPING a very frail, very ill person alive is not ‘gentle’, and there are many sorry tales of the elderly suffering unnecessarily as life is scrupulously prolonged.

You are not in ‘normal territory’ any longer. This is not about your dad being ‘a bit ill’ and then ‘going to hospital’ where he gets ‘treatment’ and then ‘gets better’ and ‘comes home’ and ‘everything goes back to normal’.

You are at the extremity of life, where the sea of death laps the shoreline of life - the waves may retreat, and leave the patient alive, or it may advance inexorably, little by little, like the tide coming in, quite unstoppable by human power, whether that is the power of the patient to resist it, or the doctors to treat it. Or, sometimes, a single ‘advance wave’ may sweep in, and carry off the patient before anyone expects it.

Death, it if is to come now, has its own timetable - you can’t hurry it, you can’t delay it. But the doctors DO need to know what the patient wants them to do. By saying ‘yes, he wants to live’ your dad has given the doctors the go ahead to do everything in their power to prolong life to the very max, whatever that takes…

(I’m sure, though, that if your dad changes his mind, and is capable of expressing that wish clearly, the doctors will reverse that, and not ‘interfere with Nature’ as it takes its course.)

Do talk to any of the doctors on duty, and they will explain to you the moral and ethical protocols they HAVE to follow. Bear in mind that the converse of what your dad has chosen. Had he decided NO, he wanted Nature to take its course, the doctors actually would have been banned from ‘interfreing’ (ie, ‘treating’) him at all. That’s why they have to be clear that yes, the patient DOES want ‘maximum intervention to prolong life’, or else THEY might be liable to prosecution themselves.

I hope that your hopes for your father, and his, are answered…

Shaun, there is a saying that I can never quite remember, about until it is your time nothing can slay you, when it is your time nothing can save you.
I have lost all four parents, brother, and husband. Death comes when the body simply cannot go on. You can only support dad on his journey, whatever the outcome, he knows you are there for him and love him. Hearing is one of the last senses to go, after major surgery I was totally immobile, couldn’t speak as I was full of drugs, but my hearing was 100%, so talk to day about good things you did together, things you know he loved, holidays, music. Even if he doesn’t respond, he will hear you, and be comforted.

BB, I think that saying comes via me. Somewhere along the line I read that the Arabs have a saying:

Until my hour comes, no man can slay me.
But WHEN my hour comes, no man can save me.

I find it comforting myself - I would hope you do too, Shaun…

I absolutely second what BB is saying about telling your dad all the things you want him to know, and remembering the good times you and your family have had with him…

Can’t be dad’s time yet…i stare outta the window hoping I’ll wake up bad dream…

Oh, Shaun - all of us who have ‘kept vigil’ feel that…

So so sad when those whom we love are taken before we want to wave them goodbye…

And, in a way, you know, that in itself is a ‘blessing’…for those of us who watch an elderly person fade ‘inside’ through the horrors of dementia, the reverse is actually true. There comes a point where we can only ‘long’ for them to leave this life…that it is unbearable to see them reduced to the pitiful condition that dementia reduces them to, and that we have ‘lost’ them already, as they, the person themselves, are no longer ‘there’ except as a shambling wreck of their physical body, their mind long, long gone…

THAT is a vigil I would not wish on anyone either - ‘waiting for them to FINALLY die’…

So you see, in that respect, it is better that you are longing for your dad NOT to die…

Dads fighting it. we can at least holdhis hand and tell him hes not alone. he belueves his spirit is stronger than illness and disability and that its not his time. he had bit porridge today… come on dad eat bit more …

Does end of life alwsys mean end of life for all end of life patients.? nurses see bits improvements with dad -docyors not-who to believe…

Shaun, there are no answers to that one, Dad is having a struggle that only he can win or lose.
Plan for the worst, hope for the best, but you must accept that dad is very, very ill and his body may be too poorly to win this battle. Don’t deny this is a possibility.

End of Life can be a very varied time range. Some health professionals will not declare someone to be end of life until the last few days. On the other end of the spectrum I carefor a client who has not got out of bed for 18 months and who has been classed end of life for over 2 years.