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Overnight hospital carer for dad with parkinsons - Carers UK Forum

Overnight hospital carer for dad with parkinsons

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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!!! :)

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.....