i believe this needs to be aired
 

WARNING THE FOLLOWNG SUBJECT MAY NOT BE SOMETHING THAT EVERYONE CAN HANDLE, SO IF YOU ARE SENSITIVE ABOUT THE SUBJECT OF PD AND DEATH READ NO FURTHER



When the time comes when we reach stage five, (remember nobody lives forever) what happens to us? We once had a few caretakers whose spouses passed on in stage 5, remember GOOGY's husband (Bill, who went "naturally"), and Bella and her hubby Fabs (Fabian who went right to the end); and others over the years.
I've heard that it gets pretty distressing in the end, and it's a slow death (go figure?). Something like congestive heart failure, well something like that, i' m not there yet. Can somebody give us some no BS about it, at least so we don't miss anything to aid our passage?
And i have read many times that suicide in PD victims is not much greater than the general population, so for those of us who have had it for years , i guess that means that it's no worse than a bad "off" in the end. I'm very curious because i can't seem to find descriptons of many "case histories", to get "a handle" on just what to expect? I mean, if there is anything that they REGULARLY do, to stop choking for 4 days or lingering painfully, i wanna know about it, so i can order my doctor to give it to me, even if it kills me. Now i'm no Kevorkian fan, if you can still get pleasure out of life but just want to end it because you are depressed, well that's a bad reason, because they have things that will fix depression, but if i'm in really bad distress for more than awhile, and it's the inevitable end stage of pd that's causing it; please forgive me, but i wanna have it ready to use.

It's like waiting in line at the DMV. only longer and more painful
 

CS,

A not so funny thing happened on the way to a cure-it's taking a lot longer than many of us would have thought. I haven't been on this board since January, but I couldn't sleep and logged on to find your familiar moniker.

Having lost AJ's mother and step dad, and my own mother, along with a few PD pals and a couple of non-PD friends in the last two years-yes, it's been raining death around the Wasson house lately-we've seen our share of departures. And at 16+ years out, we have had enough aches and pains to provoke a few "what if" conversations to be filed away for future reference should we mutually decide that the game is no longer worth the candle. Hopefully that day is quite a ways down the road, but having been a Boy Scout, I like to be prepared.

I can't imagine this comes as news to you (weren't you a chemist in a previous life?), but after witnessing a few passings and discussing the location and use of the "emergency exits" with a couple of doctors, I think at least here in the US it would go something like this.

To be plain, it seems that there are three ways out: (I) passive assisted suicide, (II) assisted suicide, and (III) good old-fashioned suicide, unassisted.

I think we see a lot of the first in respite, nursing home, and hospice care, although it is not discussed openly. Unless we are among the fortunate few who fall down the stairs or bonk their heads and lose consciousness and never wake up, there is usually a substantial amount of pain associated with the end-of-life for PWP's. Strong painkillers like morphine and its derivatives are still used to make patients comfortable. There comes a point, which I've seen in several instances, where the issue is whether to increase pain meds and take the "risk" that the patient's breathing will be suppressed by the sedation and cause his or her death. The "upside" of this is that you can make it known to those near and dear to you, that should that choice present itself you would like to vote by proxy for over sedation. I know nurses and doctors who in their private moments acknowledge that they have increased pain medications at the request of relatives knowing the probable outcome. I think it happens all the time and it doesn't hurt to let those around you know that you would appreciate a push beyond a simple DNR request.

Assisted suicide seems to be a lot easier to come by than I would've thought, especially nowadays. If one seriously want to find the exit, and wants to avoid both additional pain (gun, rope, bridge, etc.) and the possibility that he or she will botch the job and wake up with end stage PD AND scrambled eggs for brains, one can simply start asking around and sooner than later find a group dedicated to making the exit as easy and pleasant as possible. I don't know the cost, but my understanding is that the patient buys the raw materials, including the proper mix of medications and simple hardware to effect their delivery, and the assistants help you set up the rig. The patient uses a plunger or some device to begin the flow of medications through an IV (that makes it the patient's choice), and after determining that the patient has departed, the assistants simply walk out the door and notify someone so that no one mistakenly walks in on a scene they did not expect.

Unassisted suicide is apparently quite easy as well, but involves a little more planning and risk. My understanding is you want to get the mix of medications absolutely right, to avoid pain or unpleasant sensation, and ensure that you make it all the way out. If the Internet isn't full of reliable information on this I would be flabbergasted, but if you can consult a sympathetic medical professional to talk to off the record, I certainly would.

As you said CS, most PWP's don't take a bow and leave the stage voluntarily. Like most of the population, we cling to life under the most extraordinary circumstances. And, to my mind, this is as it should be. Occasionally I have days where not a single comfortable or pleasant moment has intruded on the misery. But then at the end of the day, or sometimes late at night talking with AJ, I will find myself laughing at a joke or circumstance, or looking into the eyes of a friend, or simply notice that the medications have finally kicked in for few moments of blissfull relief, and that is enough to make me want to wake up the next morning and see what life brings.

The end stage of Parkinson's is pretty unpleasant, so I'm told and so I've seen. But so far I'm content to wait as long as possible to find out. Not particularly believing in an afterlife, I find the prospect of eternal oblivion scary, though if it is eternal oblivion how I would ever know is beyond me.

If there is one thing PD has taught me it is that the human spirit is stunningly elastic. It can bend and bend and bend and still not break. Whether this is simply a result of a chemical mix in our brains, or truly a testament to the resiliency of the human spirit, I can't say. But to those of you who remember him, I will quote the words of an old Braintalk comrade - "if you want to keep moving, keep moving." If you don't, make sure you know what you're doing and think at least twice about giving up the only thing any of us has ever known - life.

Greg

my 91 year old father died of complications of old age and my 62 year old brother died of lung cancer. both were in hospice and were given morphine as needed. i can't think of anything more awful than dying of lung cancer since it spreads so rapidly through the body. assisted suicide is legal in wash state, my brother had filled out the forms but it didn't happen, at the end he wasn't capable of taking the meds himself.

not to be too cynical but everyone, whether they have pd or not, need to have their exit wishes known to your heirs and involve them in the planning.

I really agree with this , someone or a close trusted few have to know your wishes and see that it is carried out. Unless it is illegal...don't want them to be getting in trouble.
And it's good for family & friends to have some idea of any wishes so they aren't shocked, argue or blame the ones that implement the wishes.

A. Yes, yes. I slipped back into Depression for a while last year, and during that period, visited New Mexico--as any "high-functioning" depressive should. I was having Dark Thoughts one day (not even close to acting on them), when a friend who races pigeons took us out back to see the pure white males get their afternoon exercise. Their bursting skyward was weirdly inspiring--weird because you're supposed to be inspired by them, and I, rebellious as I am, have a streak of not liking to do anything normal people would do. But there I was, my friend telling me he takes the birds to weddings and funerals (for a fee), and I rejoicing that I had survived to live that day, with the white birds against the bluest sky ever.

B. It's a subset of the Mystery of Living: Do I live alone in The Void? r is there something else present to me? Do I live awake and alive? Or do I stumble toward nothing? These are questions that many avoid by buying Stuff and gaining Status. It's our good fortune to have PD, so, seeing that Status and Stuff can't save us from The Void, we can ponder such questions. It's a matter of which wolf to feed--you've heard the story.

C. Maybe you would remember to give an old pal or two a call to say goodbye.

Jaye

i hear your voices
 

of a few of "us" who usually are always ready to respond to the tough questions, and this is perhaps the toughest one to deal with, for ALL of us, parkinsonian or not. We'll all have to find our own answers ultimately. I' just glad that i lived to see humankind sort of understand the mysteries of reality, before i have to dive back into it. cs

hey cs,
i believe it was said here earlier but, it's probably best to have a legal document, living will or health care proxy or such. it alleviates family or friends from making difficult decisions under extremely stressful circumstances.

my dad, mom, brothers, and i were or are dnr.

my ma had high blood pressure, she told us (kids) that the docs said she didn't have to take them anymore.
it turns out she stopped taking the meds because she couldn't afford them and her pride wouldn't allow her to ask us for help.
she an aneurysm the size of a quarter in her left temple, a stroke, was in a coma for 3 1/2 months. she had to learn to walk, talk, feed and care for herself all over at 60.

my dad was 49, cardio-myopathy and given 6 months to live in feb of 1972.
several hearts attacks, a stroke in '80 and a cardiac arrest in '81. at that time, the state said docs had to make 3 attempts to revive. he woke up swearing the 3rd charge.

he was 71 years old, oct 3, 1994, first day of bow season, he got a nice buck. sat down for coffee and smoke while he waited for my brothers to help him haul his buck back. less than an hour later my brother, david, found dad dead.

my brother-in law shot himself in the head with a rifle oct 19, 1995. left my sister and 3 month old twin girls behind.

my brother, david, was healthy strong and full of poo, had 2 aneurysms or goliath arteriole-venus malformations (one the size of a golf ball in his left temple and the other the size of a lime in the back of his head) and in less than a week. he had spiked a temp of 108 for over 12 hours. he was pronounced brain dead, i made them check and re-check all of their tests, and results 3 times.

there was no recovery from that. death was a grace.

he died on jan 8,1999 at 39 years old.

after a family conference, the goodbyes, i was the youngest at 34, but i signed david's final paperwork to turn off life support and held his hand while his body left this world. just like when we were kids and held hands to cross the road.

at any rate, i worked at the same company that my older sister did, and apparently my sister had discussed her feelings of second thoughts with her co-workers. she blamed me for "killing" our brother, after all "i unplugged him", i had a few of her friends ask me if i felt like i had "murdered" him.

i asked "them" why i hadn't seen the sister or them, while i held his hand. i respected his wishes, "their selfish denial" would have prolonged his body's existence.

the point of all this babble is that we are not always allowed to choose when, how or what we die of.

making your wishes known gives us dignity and allows those left behind with the "comfort" of respecting your wishes.

my apologies, i've insomnia ramblings and talk or say too much.
make any sense?

so true
 

Thank you for sharing that, and for everyone on this post. These are things everyone should think about and consider, hard and unpleasant though it may be. Not letting your wishes be known, preferably in writing, makes it harder for everyone later and leaves those behind always wondering if they did "the right thing". I think it is hard enough to have to actually "turn the machine off", as you put it, even if you have been told very clearly it is what the person wants. How hard that must have been, and what courage you had, and honor for your brother, to do what you did. I have no doubt he is grateful for your courage and in a better place, free of pain.

It is cowardly and selfish for others to stand back and do nothing at the time, and then later criticize those who stand up and honor what their loved one wants. They clearly have not thought the matter through. Perhaps a gentle reminder asking them what they would want if they were lying in a hospital bed in pain, high fever, whatever, with no hope of ever leaving that bed, would help them see the grace and dignity that stepping up to that most difficult of plates, like you did, represents.

my plan
 

I find myself more worried about how extreme disability at the end of my life will negatively effect/be a burden to my family, especially my daughter. I want to have a well thought out exit, communicated explicitly to those "in charge" of my care at that stage, in order to spare those I love/who love me unnecessary anguish or prolonged responsibility. Right now, my plan is to approach death the same way I approach life - the next big adventure. I figure, if I were a person of religious faith, that faith would sustain me. But I am not religious. I am a person of curiosity, though, and until proven otherwise, am happy to think of death as simply the next chapter. I'd rather not tarry immobilized in the 9th Circle of Hell, but quickly turn the page to see what happens next.



Canto 34 from Dante's Inferno:

How frozen I became and powerless then,
Ask it not, Reader, for I write it not,
Because all language would be insufficient.
I did not die, and I alive remained not;
Think for thyself now, hast thou aught of wit,
What I became, being of both deprived.

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

Thank you, Wendy
 

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

Rational Choice
 

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.

it is a God discussion
 

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
 

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

mike fox put it this way
 

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 have witnessed the power of the human spirit
 

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

Peggy - death is more painful for those left behind. The aching void of absence, impossible to fill.

Carey
 

Your words run so true! May I "borrow" them?
Thanks.

Peg

hey cs-
It's ironic this would be the day I get on this website, after not viewing it for the past week. My husband is in his hometown right now visiting his mother, who has a sister (my husband's aunt, of course) nearby who is dying (I am not sure from what). The aunt is in either hospice or a rest home; he couldn't tell me which. it was upsetting to him. he thought the staff was excellent and the place itself was really nice...but the patients were what unsettled him. It was depressing and horrible to him and he never wanted to experience that again. this concerns me, naturally.
At this point, I am still functional though many days I plan around my symptoms. As the weeks and months roll by, I can feel my body rebelling more and more and this short conversation with my husband yesterday needs to be addressed. If he's that freaked out by sick people not related to him, then seeing me slip further awway from him will push him over the edge. He's not a big conversationalist and speaks more with emotions than his head when it comes to family. I am the opposite, and with this illness definitely need clarificatinon. I have a DNR as well as legal healthcare power of attorney, but if I cant count on him to be my caregicver, i need to think of something else.
Suicide has definitely entered my thoughts, even recently due to depression, but it's not an act I'd entertain as an end. I definitely agree with harley to stay out of the assisted facilities as long as possible (or ever)..I'd take having a paid caregiver who knows what they are doing over a spouse/partner/family member who doesn't care or is unwilling or grudging in their care. Recently a close friend's father passed away from complications w/MS. He died peacefully at home and in fact had received the majority of his care in home from a paid CNA. This CNA was indispensible to this family and made every day more bearable. Red was able to pass with his family present, in his home, surrounded by peace, love and dignity. Definitely the way I want to go.