DO NOT READ THIS IF YOU ARE SENSITIVE TO END OFO LIFE ISSUES! I am not trying to be morbid, but there are some very important decisions that we all need to make one day.

One of my first questions upon receiving my diagnosis of Parkinson's was, "How long do I have?" I knew at that time that Parkinson's didn't kill you . . . or does it?

Now that I have endured this debilitating roller coaster life for nearly 18 years, my question remains, "How long do I have?" I don't mean how long until I pass from this life, but how long until my quality of life (QOL) reaches the point that I just cannot take it anymore? To be confined to a chair or bed and having to have someone else do everything for me (feed me, change my soiled diaper, dress me, bathe me, etc.) is not a QOL that I feel is acceptable for me. But who decides when enough is enough?

What are your thoughts on this? Do you think it is ethical for someone to choose how much you can tolerate in your life? I don't mean that we should legalize suicide, but why does a person who can do nohing independently and has lived a good life - why does that person not have full control in choosing when "enough is enough?" Or do you think we do have control of such a choice?

This is why it is so very important to have Advanced Directives (formerly called a "Living Will"). I have mine signed and notarized, but somebody else will have to be the one who sees that my wishes are carried out. And that just doesn't seem quite right. If I am perfectly comfortable with living my life unable to do for myself, then shouldn't that be MY decision if I choose to live in that condition? Conversely, if I am ready to leave this life and let nature take its course, shouldn't I be able to say when to call it quits?

Do you have anyone you trust enough to carry out your wishes? I have had frank discussions with members of my family - my kids and my husband - and they aren't all in agreement with my choices. And some of you might be saying "It's a God thing," but it's isn't totally in my opinion.

How are you going to handle this point in your life? I think it's healthy to share on this subject.

Sincerely and respectfully
Peggy

Hi Peggy,
I've had PD a long time now.
I have no idea when or what my death will be like. Who does?
I can guess and dwell on it but try not to.
My family know that I wish for no medical intervention in the case of life threatening illness and that I'm happy to have a paid caregiver either at home or in the appropriate set up if and when that might become necessary.
It won't just be my QOL that will be trying should that day come but theirs which in many ways (it's a girl thing!) worries me more.

Dear Peg
My philosophy is to coup and manage my life day by day. It is in vain to try to make a life plan as there are so many variables which are beyond our control.
As for death, this is strictly in the hands of God and there is nothing we can do to change that.
I hope this will bring peace to you.
Imad

Thank you made-it-up and imad. I like to hear how others deal with this time in our lives that we all must face. I suppose that I should do as imad suggests - leave it up to whom I believe is in control - and it sure isn't me!

For the record I have put my order in to pass on from a heart attack while asleep, but I understand that choice is pretty full.

Peg

Peggy,

I have a signed directive in case I am unable to speak or respond. Specifically I give instructions for no extreme measures, and to NOT insert a feeding tube without my express permission. If I am unresponsive, I do not want to be kept alive via a feeding tube. (and I've asked for whatever medications will keep me comfortable at end of life.)

best, Jean

Hi Peg,
Thank you for bringing up this very sensitive and controversial topic. “...end of life..”
I'm in my 11th year of having PD, I live alone with my cat. For now, I can still fully take care of myself, still enjoying life with my grandkids, daughter and friends, can still go for short walks along the beach, go the gym 3 times a week, still drive for now, but I'm gradually changing over to my 3 wheeled electric bicycle and honestly I have to say: “I'm scared to death of my future”. My Parkinson's symptoms aren't going away and at some point, I'm going to have to face the day when my condition reaches a point where I had enough, no longer want to continue living, the body is past the point of a meaningful life, etc. My biggest fear is NOT being able to have control to end my life.
Down the road, hopefully it's a long road, all it takes, is a fall or a very bad cold and I could end up in the hospital. My family & doctors will have the power to decide that I will no longer be capable of living alone and taking care of myself. I could end up in a care facility, no longer in charge of my life. I've seen and known other pd'ers in the advanced stages, wishing the end would come. I've seen the pain and suffering their partners went through as they slowly watched their soul-mates whiter away. I don't want to be in that position.
I've picked up 3 good books on this topic.
If I can list them, they are:
“To Die Well” by Sidney Wanzer MD and Joseph Wanzer
“Final Exit” by Derek Humphry
and “Assisted Suicide” a Canadian Perspective
I have my legal documents in order, giving my daughter Power or Attornry, my will, etc. But when I try to talk to my daughter about me ending my life, she doesn't agree with me, get emotionally upset and it's difficult to get her to understand my wishes. I know she's scared too.
I'm constantly putting things off. I'm feel fine and happy today, so I'll put off getting my financial papers in complete order tomorrow, I'll finish my family photo albums next week. I'll clean out my closets for Salvation Army next month. [...] I'm feeling fine today so I'll put it off 'till ?? What I'm afraid of is when do I decide? It's like that frog in a pot of water on the stove. As the water heats up, the frog doesn't jump out in time. I have always told myself; The day I start needing diapers, is the day, or will I?

All we have is today,
Enjoy what we can.
Max

Very wise. This is exactly what I wish too, but I have not come round to put it in a directive. My God, I act as if I am going to live for ever !!
Thank you Jean.

Hi Peg,
Although we live on either side of the Atlantic, we have met and know each other well. I wonder when you stayed wth us, did you get the impression that the following was my philosophy, or do you think it is not accurate, more wistful thinking.
We all have to die some time, we have no control when or how. So why are PWP any different? I have had PD for 20 years now, but there are much worse things in life than PD. Death by that flesh eatring bacteria makes me crawl. Even my window cleaner got it right. He said one day, "Someone is always worse off, pity the poor guy who has aids, is going blind, and then gets run over and breaks his legs and one arm."
Like Imad, I take every day as it comes. I am proud of what i achieved in my career, and as a result i am finaniacially very sound. I am proud of my family and what they have achieved and proud of my relations with them. We all went on holiday together last month, all 14 of us, i rented a huge house with 8 bedrooms and 10 bathrooms. at the end of the week, the 6 grandchildren came to my wife and I and said, "if we save all our pocket money all year, can we come again next year.
i am actually enjoying life, although i am giving up driving now, can't walk unmedicated, can't go on the cruises I enjoyed so much, tried to enjoy a swim last cruise and had to be rescued twice!!! You know the story.
The future will take care of itself, i don't have to. When and how it will end, like the rest of of the population, I just don't know.
Very best wishes
Ron

I guess it is sensible to plan for when we "shuffle off this mortal coil", however I am not brave enough to plan to the extent of some of the posters here.

I'm with Ron, I could get knocked over by a bus this afternoon, life has too many variables for such planning to be meaningful.

Sensible to plan for end of life, unhealthy to plan too much I believe.

Take care, this post seems a bit out of character for you.

Neil.

aftermath

This post is a bit out of character for me, and I guess that is what concerns me. I think I am having personality changes. This might be the PD itself, but it is more likely to be the meds (narcotics) that I am on for the pain. And frankly, I do not like the new "me."

Ron, you are such an inspiratiooon to me. You had bad dyskinesia at least 5 years before I started the experience, and you are handling it well. Margaret is such a supportive wife.

It's just that I am rarely feeling "good" any more. I will have a little talk with myself - the "pseudo-self" that is resulting from all of this mess. Hey! There's a new one "pseudo-self." Wouldn't Freud be proud of me? lol

Thank you to everyone who has responded in this thread. You know, I attended a retirement dinner in Washington, DC last week for a dear Parky friend. His wife passed away a few years back from PD complications. I recall calling him on the day of her passing to express my condolences. He said, "It's not a big deall - I lost my wife a long time ago." I interpret that to mean that she wasn't herself - she was "out of character." And I don't want that.

But why worry? In many ways it's good that such decisions are out of our hands - not ours to make... Worrying about something for which you have no control is a wastful use of time. And time isi all we've goot. So I will start right now trying to spend my time more wisely. Like - what am I going to fix for supper tonight? lol

Thanks friends. I needed a little boost, and I got it.
Peg