My father has died


#1
:cry:Sadly my father finally lost his long battle- 10 years- with PD on 25th November, aged 88. At his funeral, only 30 guests, we raised £170. He would have been pleased with that.
I have nothing to base this on except my own experiences with Dad.
In the beginning the PD worked slowly taking Dad's mobility after 6/7 years his was in a wheelchair and unable to drive or live on his own. He couldn't manage the house or his personal needs. He went into a care home.
I kept asking his PD Specialist and Nurse where this was going and how, and how long would it take. But there were no answers.
Then in the last 18 months, he was doubly incontinent and then PD started to take his mind.He transferred to a Nursing home. I watched a bright, highly intelligent man, loose the ability to watch the tv, listen to music or even feed himself. Now no one ever said that might happen!!
I understand it's good to be positive, but I never found support or any literature that really said how bad it could be. And my god it was bad. I can't even begin to explain. The photos of Dad look like a man from WW2 concentration camp. I feel the society does have a right to tell the worse situations too.
In the last year of his life he lost the ability to speak and was often detached from the real world.
WHAT WAS HIS LIFE? WHAT WAS THE QUALITY OF HIS LIFE? Was he suffering? Honestly, I don't know, he couldn't tell me. Would he liked to have lived like that ? Definitely not.
Watching someone you love slowly dying and not being able to help is the hardest thing I have ever had to do. There must be a better way.
I loved my Father with all my heart I always will. Noelle

#2
So sorry to read your post, Noelle, you have my greatest sympathy, as does your father. In fact, you have described my greatest fear. I hope to retain the presence of mind and physical ability to take matters into my own hands before I get to that stage but there is no guarantee of that. One of the worst things about Parkinson's is the uncertainty of how it will develop and how quickly.

#3
Thank you for posting Noelle. Things that are hard to face cannot be changed unless they are faced. I would like the option of physician assissted suicide to be legal. I know there would be problems but there has to be something better than the suffering your father endured. Again, thank you for your courage.

#4
Hi. I'm 53 and symptoms are happening to quick now I'm forgetting what I'm doing putting beans in the toaster,dog food in the bin ( he did complain),so your situation with your dad is all that I worry about and I now denfinately don't want to be in pain till I'm 88.my dad died within cancer the dx was four weeks and he had that much morphine that he slowly closed his eyes on the world peacefully.so why cant pwp who are suffering have the choice to go peacefully as well.
John

#5
HI, I just wanted to g say how sorry I was to hear of your father's death. I never realised pd could be so awful as that and I pray that your father passed away peacefully and without pain. I wish you well for the future, and Ihope you will find the answers to the many questions which are surely going through your mind right now. May God Bless You and your family.

#6
Hello Noelle,

I have just read your post and am so sorry, I couldn't agree with you more as my husband has had pd for thirty years and has been so brave fighting this dreadful condition. He is suddenly losing quite a lot of weight which does happen with pwp's especially when they have had it so long and I am thinking is this the start of the end however long that will be, I know he could go on for a few more years just getting thinner and thinner, there must be a better understanding of end of life treatment as he and our family wouldn't want it to be this way.
This is the main reason he has signed a DNR form and on it has included that he doesn't want peg feeding or feeding through a tube and only medication to keep him comfortable.We have tried to prepare as best as we could but you can only go so far with it. I do feel very much for you as I have friends who ended up the same way so terribly thin and its all so sad really, I do hope that in a while you will remember the good times and the bad ones will fade.
thinking of you
vivian

#7
Hi Vivian, I have just read your post. I have had pd for almost 40 years and I guess I must be very uneducated about pd , although I always thought I was very clued up on it. Please could you tell me wht peg feeding is?

#8
Dear Blue Angel,

This link takes you to information about Peg feeding:

http://www.patient.co.uk/doctor/PEG-Feeding-Tubes-Indications-and-Management.htm

If it doesn't work, do an internet search for information.

My mum had problems with swallowing at the end of her journey with PD. One of the problems associated with that is that with either nasogastric tube feeding or peg feeding all nutrition is liquidised. And most PD medications don't work very well with being crushed and administered in this way - so even more problems. One of the big challenges....

#9
Dear Noelle,

I'm sorry to hear your sad news about your dad.

Unfortunately my mum was all too aware of the possibility of a difficult end stage of PD; it doesn't happen to everyone of course, but it isn't something that is publicised much so preparing for it is difficult.

But because of her knowledge I was well aware of her feelings about end of life options and interventions, so I was able to make sure her wishes were carried out when she became unable to voice them for herself. It is an important discussion to have if possible, however painful.

Even knowing what I did didn't really prepare me for the true nature of those difficulties and the enormous sadness of loss. Take things gently, and look after yourself as well as you can.

Best wishes x

#10
whether with one disease or another, our time will come when enough is enough. I personally believe that for most pwp reading this, it will not be pd. But it will be something. Technology has extended life, but in many cases, it has extended life into the realms of hell. With the benefits of modern health practices comes the responsibilty of ending life when it should be ended.

#11
Hello Noelle, I am so sorry to hear of your fathers passing and the obvious strain it has put on his family to watch his deterioration.

I am 63 and I've had PD for 12 years and my condition has begun to deteriorate rather quickly of late. I have told my family that I do not intend to reach the stage when I have no quality of life and I do hope by that time I am still able to make that decision for myself. I believe that when people have a chronic and debilitating condition they should be allowed to choose when they feel that they have had enough, but I'm sure such an Act would never be passed in my lifetime.

I commend you for posting your feelings on the forum and I wish you well

regards
Glenchass

#12
I am astonished, astounded and very pleased.

I do not post here as often as I used to. It is correct (in my opinion) that new members share information with other new members, rather than listen to us 'old timers' trotting out the same old, same old.

But how refreshing, albeit somewhat depressing, to find it being said as it is.
Thank you Noelle

#13
Reading the first post for anyone with pd is very depressing.Everyone is different.
My father died 18 months ago with pd, yes he was in a nursing home and in a wheelchair, but he kept his spirit until he drifted into a peaceful coma. He could communicate with difficulty and signed a dns and made his wishes clear.

#14
Thank you Noelle for having the courage to tell your Mothers story. What happened to your Mother is the sort of information that should be conveyed to the wider population during Parkinsons awareness.

It would open the eyes of a lot of people and perhaps make them take notice, realise that Parkinsons is not 'just' a tremor but a life changing and I believe, a life threatening condition. Perhaps then we might be taken notice of.

#15
Noelle please, please forgive me for thinking this was your Mother's story. I meant no disrespect to your Father or to you. I am so sorry

Pebbles

#16
Hi Noelle,
I just wanted to offer my thoughts and sympathies to you and your family. I'm very sorry, your Dad must have left a big hole in your lives, I'm sure he was exceptionally proud of you all and grateful for all your help and support. Best wishes

#17
Hi noelle

Thank you so much for your honesty & frankness in sharing your family story. It sounds as if you have been on a long and painful journey with your father and god bless him now he can rest. It is so refreshing to hear the truth and confirm my fears without needing to be stuck together with all the dam red tape of the system.
My father was diagnosed two years ago and so is in early stages but nowhere have I read that the end could bring all that you describe and yet in my heart and my instinct I know what you described to be the truth.
I and it sounds like so many here are seekers of the truth and an extremely grateful to you for spelling out the reality of this disease.
I wish you and your family all the best possible chance of getting throu the trauma of your last times with your father and some peace intour heartst. God bless you all

#18
Hello Noelle
I lost Dad just over ago, age94, the last 3yrs of his life was like
something from a horror movie, but Dad was as tough as old boots and endured his
passing with courage. Some years ago when he was diagnosed with the horrible miners disease Pnuemcnosis he asked me to help him die, he saw his father die
in agony with the same killer and made me promise If he was unable to look after
himself , personal hygiene wise.or through total immobility that I would assist
him on his journey to Infinity, I agreed of course and even worked out how we would do it, We both were Single Malt consumers, sometimes too much was consumed
and we used to joke about it being a fine way to die, JOKINGLY but when PD began
its remorseless destruction of my fathers Intellect turning him slowly bit by bit
at first, then towards the end , turning Dad into one of the Living dead, I asked
in one of his last few lucid moments if I should go ahead with our plan, Ironically he had no recollection of our secret Single Malt Euthanasia , he just
whispered "can you get me home son" by then he was in a Hospice and I must say
not one of the best,in fact I would say they assisted my Father on his way faster
than our little set up could have done, He is gone now and I miss him, our long
talks into the early hours when we would choose one of our dual Malt collection
and argue the finer points of the totally intoxicating always the best of one
of lifes simple pleasures Lagavulin,Glenkinche,Glen Morangie Oh I miss him, the
Old Man. and as if to Taunt me BLACKHEART is taking me on the same one way trip
at 62 already I exhibit endgame symptoms, the same as your Dad and mine,my poor
beloved does not seem to understand how deep BLACKY has penetrated my defences
But the fight will go on to my last gasp, I promise you that, and when I do shuffle off this Mortal Coil," I think that's how you spell it" to meet Dad again
BLACKHEART WILL BE GOING WITH ME. Best wishes and the Kindest Regards
Fed:smile:

#19
Hi noella
I am ever so sorry to hear about your fathers death and the way he died. Parkinsons is a dreadful disease and really no one knows what course it is going to take. We can all hope and pray that someone out there will find a cure for this but in the meantime we all have to try and learn to live with this and get on with our lives as best we can. I won't say that I am not scared of what lies ahead because I am and reading about your father certainly frightened me, but for me personally I have to live and cherish each day as it comes and try not to worry of what may lie ahead. I can never forget that I have this dreaded illness but I can certainly try and put it at the back of my mind and enjoy my life or I am going to be miserable until the end!! ( and that's not me.! ) one day at a time.

#20
I have been made aware that my words on this sad subject may have caused offence
It was never my intent to offend any of the skilled compassionate kind individuals who devote themselves to caring for our loved ones in the last days
of their lives,you are all very special and I am Horrified that I have hurt anyone
by my posting.
Noelle my sincere apologies , and to all in the caring professions I regret any hurt I may have caused.
Kindest Regards fedex