End of life with PD


#1
I would like to find out from anyone who has experienced final stages of PD how things might go. I recognise this might be distressing for some people so I guess only read on if it is something that you have personally experienced and would wish to offer some advice on (am I making it obvious that I have never posted on a forum before?!)

My Mother has PD and has been in hospital for 6 weeks now. Prior to going into hospital she was living at home with a live in carer, but was walking, cooking, going to the supermarket. She was admitted having become confused, and then falling down the stairs leading to her becoming more weak. Once in hospital she was diagnosed with a fracture that was treated conservatively, and with delirium. she has had 4 episodes of delirium since being in hospital, with some recovery in between, leading to her being well enough to get dressed and be wheeled around the hospital. The docs felt her delirium was due to constipation and she then became dehydrated due to not drinking. However following the last episode of delirium she is now in bed, unable to swallow or speak coherently. she is still confused and hallucinating. She has an NG tube and glucose drip up. Her bloods and observations are all normal. to me she looks as if she is about to die as she is so weak and frail. However is there a possibility that she could go on like this for many months? I am afraid I don't know enough about the last stages of PD. I have cried so much and I can't bear seeing her like this.

#2
Dear Gh1,

I am in the early stages.....tremors, stiffness, spasms, etc. and can't give any advice here, but want you to know that I'll be praying for your mum and you.
I suggest you read some of the other posts from carers, there might be help there. Some folks are scared of the title of this posting you have here...so are not reading it. I expect that your mum is much worse due to the fall she took.

People here to do really care, but worry about their own situation.....lighting my candles for you ....:disappointed:

#3
dear gh1
I am so sorry that you are so distressed. I will put this as gently as I can. I have seen more than one member of my family in a similar state to you describe. None had PD. Their ages varied widely. People do not die of PD, they die with PD. So I don't think that anybody here can really describe the last stages of PD. I hope that you can be assured that your mother is in the best place she can possibly be. Most hospitals have welfare officers who would be more than happy to talk to you should you wish
Please be assured of my best wishes

#4
Dear gh1.

What can I say other than that you and your Mum will be in my thoughts and prayers.

#5
Hi gh1.

I was dx 11 years ago at age 50. Hopefullly I've still got many years left.

I'm amazed at how quickly things appear to have deteriorated for your mother. She appears to have gone from a relatively normal life for a PD patient to the edge of the big drop in about 2 months.

Notwithstanding the accident and its aftermath, this decline seems to have been remarkably rapid. I'm surprised there hasn't been a line of inquisitive consultants at her bedside taking notes.

Of course if - consciously or subconsciously - the patient has decided this is it, the end is nigh, my time has come, her psychological systems could have started to close the body down. Nonetheless the timescales are still very short.

A few points:

1. Are you certain that your mother is still being given - by nursing staff - the correct PD medication as prescribed by her consultant neurologist and GP? Also are they at the correct doses and at the correct times? Any deviation at all on any of these factors from what the body and brain are expecting can have major repercussions.

2. The failure to drink sufficiently will not only cause its own problems (dehydration, constipation, swallowing problems etc), but will surely inhibit the proper and timely input of the above PD medication.

3. It is said, and I have witnessed it myself, that many hospital medics use nil liquid input and the resultant dehydration as a convenient way of bringing about the "closure" of certain individuals whom they deem to be near departure. I hope this is not the case here.

Ray.

#6
Hi gh1,
Had no intentions of coming on to the forum tonight,but had to look something up and thought i would have a quick glance.Immediately your posting struck a chord to a similar scenario over a year and a half ago with my own Mother.
Before i explain,i have to agree to the advise and observations Rayofsunshine has given.The decline so rapid is not the natural course.Let me tell you that i am a calm guy,but my blood boils when i see or hear the give up,nothing can be done,it would be cruel,don,t try and give food or water attitude of so called carers.
My Mother HAS,i say HAS,Alzheimers and twice over a year ago,firstly the hospital,then the care home gave up on her.The doctor came out and took me to one side and informed me that it was only a matter of time,to break it to my Dad(who is 86)gently.
Do you know what i did.I told him my Mum,his Wife,his life,was a fighter.We had nursed her through hospital(they had give up also).We fed her pots of rice pudding,fluids,things she liked,chocolate,visiting 3 times a day until she was strong enough to go into a care home.Then the same procedure in the care home.Making sure of her fluid intake(the charts should be by the bed),giving her food,small portions and often.
A year or so on my Mum sits in a chair,feeds herself,still confused and with Alzheimers,but lively and the staff love her.My Dad still has the one thing in his life which keeps him going and she is now looked after well and eats like a horse.
This all started with a fall and a dislocated hip(which had already been replaced)and i feel that the decline was down to the trauma more than the Alzheimers and also the "too busy,give up,she,s ill anyway attitude of the so called nurses and carers.
FIGHT gh1,because you are all she has got.If you fight for her and are not successful then you can carry on,safe in the knowledge that you did all you could.You obviously care,that is why you are here.
Well,i just wanted you to convey my thoughts and what we went through.I hope you can find the strength to continue and will be thinking of you with hope that you too can set your Mother right again.
GIVING UP IS NOT AN OPTION,LIFE IS PRECIOUS
Good luck from someone who,s been there and sees hope from the information you have given us.
All the best
Titan.

#7
Thanks Titan.

I think (no, I know) that the overriding consideration in all NHS hospitals these days is to get beds vacated.

If a patient passes away sooner than expected, or can be persuaded to complete their post-operative recovery at home, despite the fact that a few limbs may still be broken, that's great news. It improves the government statistics and saves them a lot of hassle.

Come back Florence Nightingale..........

Ray.

#8
ghi welcome to the forum:smile:im ali bin dx 10 years im 42 now:smile: to be honest with u i saw the thread name and it sent shivers down me spine cus im always worrin bout it me self,i read ur post and did see if u dont wont carry on dont ,which i can not help but to do ,like i say it scares me the thought of the end of stagesd me self and cus i got it when i was young i dont no wot th future holds for me,but as far as ur mom is concerned gh1 all i can say to u is spend as much quality time with her as u can , even if some times she dont no u there ,she will sence u r,look after ur own health as well though ,ur mum is in good hands were she is,i will pray for ur mum and ur self gh1,im thinkin of both of u x:smile:

#9
Hi gh1,

Welcome to the forum. I am so sorry to hear what your mother, family and you are going through!

I worked in nursing care for many years and have come across many situations similar. After reading your post a few questions come to mind...

How long as your mother had Parkinson’s?
What medication was she on prior to going into hospital?
Were any changes in your Mother’s drug regime made prior to her becoming confused and falling?
Have any changes been made to your Mother’s drug regime since she has been in hospital?

The reason I ask these questions is the sudden progression in your mother’s PD symptoms, which makes me wonder what stage of Parkinson’s your Mother was at prior to becoming confused. Yes, I understand constipation and dehydration can contribute to poor control of PD symptoms due to constipation making the gut sluggish and affecting the absorbency of medication. Constipation can also cause confusion; I have seen this happen many times, especially in the elderly. Then there is the query regarding your mother’s drug regime prior to going into hospital and during hospital. If any changes were made this could cause PD symptoms to worsen and also cause delusions and hallucinations. Below are some links to info sheets you might find of use

http://www.parkinsons.org.uk/PDF/FS58_DementiaandParkinsons.pdf
http://www.parkinsons.org.uk/PDF/FS11_hallucinations.pdf

A few weeks ago, I had an awful experience due to changing my drug regime. I introduced entacapone. I became confused and experienced hallucinations and episodes of delirium. My PD symptoms progressed and I became very weak and withdrawn. Alarm bells rang and my PD Nurse was informed. Entacapone was withdrawn and with this, the hallucinations and delusions ceased. My Neurologist is now querying whether this reaction was due to Selegiline interacting with Entacapone and taking me over the edge. So now, I am to stop the Selegiline, exchange it for Azilect, introduce Entacapone slowly, and see how I respond. I've had PD since my late twenties, I'm now 45 and was diagnosed just over 8 years ago.

Unfortunately, hospitals do not have the staffing levels to give the one to one care people need and sadly, especially in the elderly, they take a downward turn and their health deteriorates. This often leads to the family being told that tender loving care is all they can offer.

I echo Ray of sunshine and Titan's advice, especially the staffs knowledge of PD and the drugs used. Also, the experience Titan shares with us re being actively involved day to day in your mother's care during her stay in hospital, although I know your own daily commitments can make this very difficult.

I wish you all the best and hope you will keep us updated. This forum is here to support you!

Cutiepie

#10
Thanks QT.

45, eh? You don't look a day over 16!

Before I went on to Stalevo (= Sinemet & Entacapone combined) I was being given Sinemet Plus and Entacapone (Comtess) as separate tablets, although I was told to always take them together.

I liked it that way because I could always miss out the Entacapone for a few days to see what happened, Whenever I did so it resulted in nothing but positive improvements.

To me Entacapone appears to provide NO benefits, but several negative symptoms. However the PD nurse was adamant that it helped the medication absorption process, so she changed the 2 tablets for a single Stalevo, thus forcing me to take the stuff.

I know many people have said Entacapone is bad news - particularly at night - but none who think it helps. Are we being conned here?

Ray.

#11
Thank you for all your support and advice. I am sorry if I upset anyone with the title of the post - I will be more careful next time. For those of you with PD please be reassured by my Mum's experience with PD. She has had it for 22 years and worked until she was 63. She took control of PD and made sure she always worked out a way to carry on with her life and not let it get in the way. I am completely in awe of her.

It is really good to know that there are people who have come back from this. I had given up hope and so now I will keep fighting with her.

She is on the ward of her consultant who has looked after her throughout and we have complete faith in him (he was one of the contributers to one of the info sheets you suggested). She is getting her meds on time and now they are giving them to her thru the NG tube to make sure she gets them fully. He asked about her meds and whether she had been taking the wrong dose. Her live in carer reported one week where Mum altered the dose but other than that no change. I will ask about the meds you suggested might not be helpful (and try and sound like I know what I am talking about!).

I am sure the hospital haven't given up on her - they have been actively treating everything! There has been no suggestion of them pushing her out of the bed - but as I am an ex-nurse and am now a manager in another hospital just let them try! And yes -I do agree with the Florence Nightingale comment - having been heard to mutter about how nursing isn't what it was - but then we did have to wear starched aprons and ridiculous hats and weren't allowed to sit and talk to patients, and certainly didn't dare question what the doctors said - so some things are much better!

The good news is that Mum eat a bowl of porridge for breakfast today so she is improving.

Thanks ever so much for your kind thoughts.

gh1

#12
hi

as said by others "keep the food and fluids" i have had one or two relatives put on "pathway" and if you can keep the fluids especially going, even if you have to sit with mum day and night (which i have done) get the fluids and food in if poss, and watch her recover!!
good luck, thinking about you and your family

#13
when i was recently in hospital (the Jack Russel Hospital, it used to be the Airedale but there have been cutbacks) it was possibly the most awful, though enlightening, 48 hours of my life. An elderly man in the bed opposite was dying and all through the night made unintelligible noises and i assumed he was senile. In the morning he had a lolipop (a wet sponge on a stick) and started to make perfect sense and turned out to not be senile at all but had been asking for water all night.
His daughter gave him lolipops all morning but had to leave. Later he was thirsty and the nurse didnt understand what he was asking for so i interjected saying he needed a lolipop. I got a dirty look from the nurse but he got a lolipop. He said 'thank you'. I shall always remember that.
I also had to point out later that he was nearly strangling in his sheets. There were a lot of grumbles about getting the schedule out of sync.
his daughter asked me if he had a good night and i lied saying he did.
its not the nurses fault but the care of vulnerable people can be appaling. if it was my relative i wouldnt leave them there on their own for more than an hour.

go to this story and you can see this is not the exception http://www.bbc.co.uk/news/health-13545780

#14
Update on Mum - they are now reviewing her medication so hopefully that will do the trick!:grin:

#15
Hi gh1,

Thank you for updating us. Am so please your mother is starting to eat again and her meds are being reviewed ~ fingers crossed!!!

Best wishes
Cutiepie x

#16
Hi gh1,
Thanks for updating us , glad your Mum is making some improvement, and hope this continues.
I always am upset when I hear stories about how patients have been left to fend for themselves regarding food and drink. I know it happens frequently , I saw it when I first started my phlebotomy job, a few years ago. I did a year of weekend work, bleeding ward patients , and i would often come to a patient who couldn't reach his glass of water or the food tray was out of their reach. Naturally, i stopped to position the plate or glass in a reachable position. Sometimes the patient would be so slumped down in the bed, they needed to be repositioned , and I summoned up my courage to seek out a nurse to ask them for help. My own supervisor soon took me aside and indicated not to get involved. It was awkward and upsetting , i did the best i could in the end , it probably wasn't enough.
When nursing myself , in the late 60's,70's and early 80's, the midday meal was sacrosanct. It was all hands on deck to help with serving the meal, feeding those who needed help , and generally there was an air of peace about the ward for a short while. All other tasks ceased and the student nurses particularly used to like to spoon feed a patient because it meant you could sit down and rest your weary feet for a little while !
Maybe things will improve now that it's been shown , Drs are even required to especially prescribe water if they want their patients to drink more.
Our sensible , traditional ward sisters would be turning in their graves at such a thing.

#17
Just to say that Mum passed away today. She just drifted away, and wasn't in any pain or distress. She was an inspiration to everyone who met her and we will all miss her.

Thank you all for your support - it really helped to know there were people out there who cared. I wish you all the very best with your journeys through life.

gh1

#18
to gh1 & family - my heartfelt condolences

#19
Dear gh1,

Thank you for taking the time to let us know your Mum's passed away peacefully, I've been thinking about you both and hoping you would post again. Although I feel greatly saddened by your loss, I found myself smiling because your Mum sounds like a wonderful person, as you say, an inspiration! May she rest in peace, in a place devoid of time, secure and protected.

My condolences to you and your family.

Be strong, live life and laugh:)

Jacqui x

#20
Dear gh1 and family. My thoughts and prayers are with you all.

Hold close your precious memories.