cs

stay out of the system as long as possible. meaning nursing homes, skilled nursing facilities, adult group homes, assisted living.. once you are sucked in you give up a part of yourself that you cannot get back. your voice disappears as you become part of the background. medicade becomes your voice without you even knowing it, and soon your world is controlled by doctors that know nothing about your history perscribing bucketloads of meds which lands you in a hallway sittting in a wheelchair inchoherent.

fight it cs... dont give in.. fight it..

I've tried twice before to post this and some techno-glitch has prevented it. So I'm shortening the post way down.

My dad passed away two weeks ago at age 92 after being in the end-stage of PD for awhile.

My suggestions:
1. yes, stay out of anything official for as long as you can
2. have a very good mattress and chair, and make sure someone knows how to use them for your comfort
3. have a caregiver, loving or paid, who will spend an hour or two a day keeping you mentally and physically as comfortable as they can
4. morphine is good, so what if it slows down your breathing at the end
5. find out if you can get extra funding ahead of time, especially if you're more or less on your own - veteran's affairs, disability, in Canada CPP; the paperwork is more than an ordinary friend would probably want to bother with; find out the agencies that will help
6. plan your nursing home ahead of time - here we had no choice but it was a good one
7. write down what you want and make sure someone knows where it is, there are heroic measures, comfort measures, dnr, etc.
8. dad's end was very peaceful, he just simply stopped breathing

Your suggestions very much reflect steps we followed for my father who had end-stage Alzheimer's. (I would only add Hospice who took over tasks and responsibility - in the best way - and who made caring for my dad's end of life bearable for me.) And at his life's end, my father just stopped breathing - very very peaceful.

Jean

I guess each of us has thought about how his or her life will end, but when you have Parkinson's, you can't assume you will die from it. Something else may get you first, so PWP and non-PWP are in the same boat. Everybody has to die of something. As to the afterlife, I agree with Greg's thoughts. Meanwhile, I am hoping there is one and whoever is in charge does not judge me too harshly. If there is none, does it really matter what I think?

My older sister committed suicide by shooting herself. She was in a partially paralyzed physical state which she would never be able to remedy, and she was living with her significant other who had dementia. Her brother and sisters were not willing to have her come live with any of them, so with no hopeful prospects, she ended her life. That is an example of a rational choice of suicide. I miss her, but I do not blame her.

My younger sister died of an accidental overdose. She had brought home a rug cleaner on a Friday night with intentions to clean the carpets on Saturday. She obviously did not plan to overdose. The carpet cleaner was still there the next day when, after learning of her death, I arrived at the house to see and console her young family. Her abuse of drugs was short-lived (about two years) and caused by a botched back operation. Her husband and kids begged her to go for help, but she would not. The death was not intentional but rather of a negligent nature. I miss her, my little sister, but I do blame her.

I appreciate this discussion. It is like someone is snapping his or her fingers in my face, yelling, "Wake up! Make plans! Don't leave it up to others." It is too much power and/or too much burden for other decision makers.

The most practical advice is from Harley. Avoid slipping into a system such as hospitals and nursing homes where you lose your voice. Be in charge of yourself as long as you can.

Meanwhile, I am alive, and I strive for a modicum of fun every day.

Thanks for the topic CS.

Ann

http://www.deathwithdignity.org/

cs.

i was contemplating the same about 6 months ago.. but was persuaded to change my mind by someone who knew alot more about my life than me... God. we have a purpose here cs. and if we opt out we will never know what it is. whether it is to be an example for strength to those not as far down the road of pd as we are or to help docs discover something they may have missed in the young onset with pd for over 20 years.

we have a purpose. and suicide is final. you cant take it back. you cannot decide you changed your mind. it is final. and whatever possibility which may have been right around the corner is gone. whatever hope, whatever miracle, whatever cure... is gone because you are. suicide.. no matter how it is done, is final.

think of this... you have had mega loads of stress. that will make your pd "appear" to be worse. it isnt. the symptoms are worse, not because the disease is but because the stress making every thing your mind and body are going through worse. the stress will lessen with time and you will feel better when it does. im not saying pd will go away. but it will be more tolerable. you need to have faith that where you are right now is TEMPORARY, a very important word to remember... TEMPORARY. and it WiLL get easier. cling to that with everything you have. what you are dealing with now is TEMPORARY and suicide is FINAL.

you have a purpose cs.. we all do. i have been told i have entered stage 5. i have had this crap for 27 years. you know what? fuk em. i am standing and walking. not always, but i dont know one pder that has 27 years under their belt that is not bed bound. i know you can stand.. you must believe it too. dont let this whatever it is take you over. kick it in the *** and take care of you. lessen your stress. dont dwell on pd so you don't become pd. maybe that is part of our purpose, eh?

I bow down to Harley.
I just witnessed the power of the human spirit.

life is all we have as someone else has said. i agree with harley that there is a plan and we are all in it together. it's never easy to get old and die -some of us will suffer and others will just stop. be kept alive artificially ..why? i get it. no thank you,take out the feeding tube.

But i can't cross the boundary to euthanasia. too much unknown.

I bow down too to Harley. and this is my say:

For me, I think I will hold on
As long as I can breath
And will accept any pain and agony
As long as I can listen and feel the music
of Johannes Brahms! (for example)
while watching the clouds from my window
I think I will not hurry going to the other side
As there is time for every thing
But I will not be afraid to step over
Actually I am a very curious to find out
Especially considering the possibility of meeting passed loved ones
My God! This will be crazy emotional !
Not to mention the possibility of meeting God himself (or herself?) ?
and if it is nothing but utter oblivion .. so be it

This is what I am thinking now
But please don’t hold me to it
Because: who knows if I change my mind when my turn comes?

Imad

timing is right so the thought probably has crossed his mind. He says don't play the end of the movie. don't play the results. just take it for what it is now. Day be day. don't plan the end and live like you know the ending.

latest interview featured on cover of good housekeeping one such as that. i don't often buy into mike's 'perfect life' and "perfect family" mantra altho i'm sure having fun is easier for him.

But i do agree with him about his point not to play the results. enjoy the story.

I am going to post ths excerpt from the PLWP journal I kept online for 5 years. I want to say to the moderators, that if you think this is too strong, I will kindly delete it. If you don't like to face reality and read about it graphically, , do not read this.

Pat. . . only lived almost 6 years after her diagnosis. I knew her the final 3 years of her life. She had a rapidly-progressing type of Parkinson’s, which was never definitely diagnosed, other than to say it was one of the
Parkinson’s-Plus syndromes. I stayed with her no less than once a week, often more than that. She lost her voice within two years of the diagnosis, began to have extreme trouble walking, rising from a sitting position, and fell often after only 3 years into the disease. Her final month of the disease saw her totally immobile, not able to even swallow - and only able to open one eye. She died of aspiration pneumonia and
kidney failure.

Wendell, her husband and I, visited Pat’s gravesite yesterday. We felt so awkward at first, not knowing what words to say. We walked all around Pat’s grave, recognizing names of others on the headstones and making meaningless comments. Then we met at the gravemarker of Pat, our intended destination.

We stood there in silence for a few moments repeatedly studying the inscription on her marker, “Patricia A. Mxxxxx 1944-2002.” I remembered the sermon I had once heard at another funeral about how that dash between the year of birth and death represented our entire live on this Earth. It is so short and so temporary. Every minute must count
for something. Wendell took my hand and said, "Let’s have prayer.”
I don’t think I even heard his prayer. I prayed after him, and I heard him sobbing. I don’t know where the words came from, but I said something like this:

”Almighty God: Thank you for this beautiful day and the for letting us awaken to it. I am so grateful that we live in a country where we are free to go any place we want and do and say most anything we want without fear of persecution and even death. We pray for those living with war today in Iraq, and ask for it to end soon so that no more have to die.

Just now I am remembering my friend, Pat, who passed away a year ago today. She loved nice clothes, make-up, jewelry, and nail polish, because she thought they made her beautiful. But we know that when all of those things were taken away and she was trapped in a body of mostly bones and skin and unable to move, that she was still beautiful. And it is the beauty of her life that gives her death purpose.

Thank you for letting our paths cross - and thank you for the unforgettable lesson she taught us all - that we are but a temporary vessel on Earth.
Amen”

There were more words to the prayer, but as I said the wordsflowed from my subconscious so they weren’t my own. After the prayer I noticed a strong breeze blowing from SW to NE, the same way it blew in this very spot a year ago. I reminded Wendell of this fact and commented, “Do you remember that the wind blew this way last year? And the balloons we
released all gathered and blew over the horizon just like this?” He nodded with a tear in his eye. I continued, “And nearly everyone standing here that day said simultaneously, ‘She’s free at last!’”

After another few moments of silence, we made our way back to our cars and drove away. We may be able to walk away from a gravesite, but we cannot walk away from death.

But there are some things worse than death.
Death isn’t so bad. . . But missing her will be. “

I hope this is meaningful in some way.
Peggy