End Stage Parkinsons - words of wisdom needed


#1

Hi. I have not posted before . In fact I am quite new to the PD world as Dad was only diagnosed last year, but in hindsight he had many symptoms: lack of sense of smell, drooling, small handwriting etc. We put his decrreasing mobility down to his arthritis and the fact he was 94.

After an infection and hospital stay where he got the diagnosis last year, he is now in a care home and is ‘end-stage’.

He can’t get out of bed, can’t have solid food as he chokes and his teeth don’t fit anymore, has hallucinations. Some days he does not eat… His speech is not good without his teeth.

We were told he was on the end-of-life pathway about a month ago with an estimate of about a week of life. Anyway, he is still with us, desperate for solid food and to walk. His heart is strong and he is going nowhere.

His grandchildren came to say goodbye, and yet here we are…

How long will all this last? I jump at every phone call, I can’t leave town , just in case, we do nothing but wait and go and see him which distresses us and him, because we won’t get him up/give him the food he wants etc.


#2

Hi @tertiana,

First of all, my heart goes out to you and your family - this must be an awful time for you all. There is no real way to prepare for end of life, but we have some practical advice on how to deal with the emotional issues relating to Parkinson’s and the later stages of life, including a booklet which you can download. You can find this information on our website here - https://www.parkinsons.org.uk/information-and-support/preparing-end-life.

I can’t sympathise with you enough because the issues surrounding death and dying are not easy to think about. You may find it difficult to talk to family members or friends, or prefer to discuss matters with a trained counsellor or faith leader, or with someone who has a similar experience of Parkinson’s to you. As such, we have a lot information on the type of help available to you on our website here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.

Lastly, our confidential and free helpline is here to answer any questions you may have about the ‘end stage’ of Parkinson’s and you can give them a call on 0808 800 0303.

Do take care and I’m sure you’ll soon receive some great support from other people on the forum who have gone through the same experience as you.

Best wishes,
Reah


#3

Hi tertiana firstly so sorry to hear about your dad I don’t know if this helps but mam and myself went through exactly the same thing 16 months ago we faced the same problem I can only tell you what we did when we were told nothing could be done and they were withdrawing tablets and only feeding with drip we decided on no more tests and doing anything that was uncomfortable for dad and pointless we only wanted to keep him free of pain sorry to say took almost 6 weeks but he had no pain unlike us there is no easy way to say it but you can only do your best of course our choice might not be yours only you and your family can decide the way you go I found it hard as I to have pd if you want to chat anytime I, m here for you anytime lastly Don, t blame yourself for anything it is a really tough place to be
Pete


#4

Hi @tertiana
I don’t know that I have the wisdom you seek.
But I trust that you will find the strength to find your way through this horrible situation I truly believe that!
I hope that people far wiser and experienced than me will be able to help you on this forum and can only wish for you and your family the best outcome possible.
And I sincerely wish your dad a clear and peaceful path.

Tommy…


#5

So very sorry to hear about what you are going through…and your impending loss. But he is still here and I wonder how you can make these end days a special time, in spite of it being gruelling for all. Did your dad enjoy music? Can it be played to him? Including songs.or what ever he liked. poetry./literature/ any kind of writing that could be read to him?
.When my mother was in hospital for what turned out to be her last two weeks, never conscious but with different levels or depths of unconsciousness, I read “ The Divine Office” to her ( a form of prayer said at intervals during the day in monastic houses and the like, and which my mother used to love) And a book by Michael Morpurgo whose writing she came late in her life to love also, as I do. . I don’t know how much she heard but I sensed her awareness at times and it was a precious experience and now memory for me to have and hold onto.
Anything that soothes the senses, Including.touch and holding - .essential oils for a hand or body massage?.
Just being , waiting, must be awful, but I imagine, perhaps wholly naively , that it could be a time of blessing. He is going, like we are all going to do, but you can accompany him to the door . Talking, reminiscing, telling him he is loved…doing whatever comes naturally to you, away from the gaze and hearing of staff or whoever. It is a precious time that you will hold in your memory long after his passing…


#6

Hi Tertiana, I really feel for you as we had a similar situation with my Dad. He did not have Parkinson’s but had had a series of strokes and after the last one was unable to swallow. He had been in a care home for about five months when he had the last one and he was very comfortable there (offered to let me have his “hotel” room for a couple of nights so I could have a rest). As a family we decided, with the GP’s approval, to keep him there rather than send him back to hospital in the hope that we could nurse him back to how he had been before the last stroke. Sadly it didn’t happen and he died about three weeks later. An agonising time all round and I still am not sure whether we made the right decision but who knows, the outcome may well have been the same if he had gone into hospital and he would not have been surrounded by the care team he was used to. I can only wish you all well and particularly your Dad.


#7

Hi Sue M
I sincerely hope that you don’t mind me answering your post.
Almost 1 year ago my brother suffered his third stroke and his time spent in the hospital especially A&E was utterly appalling as they discharged him after 4 hours stating that he did not require hospital care and could find nothing more wrong.
After arriving home he was in excruciating pain a doctor was called and it was straight back to A&E 2 hours after being discharged.
The following day he was moved to a ward with some fantastic nurses and it was revealed to us by his GP not the hospital that he had sepsis.
That was his last week with us and I personally had to fight for pain relief for him as the nurse could not deviate from the consultant’s orders of oral morphine whilst they were also told not to give him water to drink as he would choke.
I pointed out the foolishness of the decision with the consultant and the nurses were almost as happy as us when they were allowed to inject pain relief and he was much more comfortable as he finally slipped away.
Still no consultant would admit the cause of his death but it was on the certificate.

So I have absolutely no doubt the path you chose for your Dad and your family was indeed 100% correct and I’m so sorry you lost your dad however his compassionate passing I hope will be of some comfort to you as you live the rest of your life.
God bless
Tommy…


#8

Thank you, your reply is much appreciated and makes me feel a lot better.


#9

hi T. i was diagnosed aged 44 with pd and was working at the time as senior healthcare assistant with marie curie nursing service ie marie curie nurse. this became known as end of life care because whatever we are dying from, we all need the same final care and that is to be kept as comfortable and pain free as possible and our symptoms managed well. after taking a few weeks off from work for meds check, my first community visit was an elderly man with end stage parkinsons.curiosity for my future as well as professionalism made me eager to do this visit and i was glad that i did.this gentlemans situation was just as many non parkinsons patients were. i guesse what im saying is the need for food and then for fluids finally diminishes and even at that stage we can only watch and use gut instinct, we cannot say. your dads symptoms as you write them out here may need addressed individually, hallucinations can be due to urinarytract infection which may be treated if diagnosed as such or it could be from painkilling meds if he is on anything. patients can be on and then off the pathway as its very difficult to determine prognosis at times.its not always a guide.maybe another method of feeding ie tube i know its invasive but if he is hungry he must have nutrition allow him to be without his teeth and avoids choking. if his tummy is being fed then his want to eat by mouth might not be so distressing.im so sorry you are in this position and i feel helpless for you but please consider asking your dads gp about his individual problems as he may be in discomfort unecessarily. remember too district nurses/gp/self referral to marie curie nursing service can give you a great deal of support and help you clarify the situation. im thinking of you.i retired early due to pd but i adored my job and its what i did best.


#10

Hi I’m sorry to jump on this thread , my mums needs are quite similar in that she’s stuck in hospital , scared with hallucinations but needs to be there for feed etc. She’s so desperate to eat and there in mind knows who we are etc , we are looking at the peg tube so she can be then discharged and cared for at home. At least then we know she’ll be in a place where she is familiar with her surroundings . Is the peg tube quite common with pg patients ? We never knew her swallowing was such an issue until she went in mid March to then be diagnosed with pg and subsequently risk fed then NG tube as risk of choking . We are very confused on what to suggest to mum as they have said the peg tube may even increase her weight , but then she loves her tea etc so much I feel she may want us to risk feed but not getting as much nutrients etc. She’s been in hospital too long now and I feel wasting her last few months of life :cry:


#11

I also want to add I know how upsetting this is seeing them this way and I really feel something can come of this , it’s just awful seeing that they want to eat and move etc and can’t :cry: take care x x