For those who care for someone with Parkinson's disease
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Disclaimer: I am about to discuss a controversial and disturbing topic, so be forewarned. I'd like to hear from those of you in the states of Washington, Oregon and Montana (as well as those of you outside of the US that are in countries where assisted suicide, 'death with dignity', or other termed euthanasia is legal). This topic cropped up unexpectedly in a conversation my husband and I were having regarding future plans. While I believe in and appreciate my state's adoption of laws allowing death with dignity, I had not realized that it was on the table for us. (I guess in retrospect I did... I just have been pushing it out of my mind, since we're nowhere close to those times yet. Still, it took me by surprise.) I know what I believe. It's the same reason we both have our paperwork in order, so that we won't be forced to go on suffering indefinitely if all hope is lost. But how does Parkinson's fit into all this? I find myself asking "Where is the line?" and "Will it be clear cut? Will I know when the time comes?" I know that it's a very personal line, and one that has to be drawn by the person who has to live within that skin. But what if he decides that line is the point at which he has to have a wheelchair? Or when he becomes incontinent? What happens if his mental status becomes such that he can no longer legally make the call? I'm interested in hearing from other couples who live in areas where this factor is on the table. Have you discussed it? Do you have solid lines as to when this particular item will come into play? How have you dealt with the possibility that mental deterioration might come before that physical line, and how has it affected your plans? I realize that some of you might not believe in the ethics of this particular procedure. I understand that position too, but I'm really wanting to hear from people who do, and for whom this is part of their care plan. |
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mylove, I'm not in any of those states but did want to chime in, off-handely, because that line has become very muddled for me after I read a book called something like "The Best Possible Care", can't remember the exact title. Written by a doctor, it chronicled many of his patients who had made very clear their desires to not prolong things, but what he routinely found was that when things got really difficult, and more drastic measures were being discussed, then all of a sudden they did not want to be given up on, treatments not attempted, etc. What apparently happens is that while we are here now, not in horrendous pain, we say "sure, I don't want to prolong the inevitable, etc." but then when we actually are there, in very bad shape and realize that without a treatment we are really going to die (and that treatment is not a guarantee that we will live, btw), and it's that time to withold treatment, etc., we change our mind. And what makes it difficult for the doctor is that if the patient is competent, as they often are, the doctor must comply with their present wishes and disregard their prior instructions to let things take their natural course. It's a nightmare for everyone. The doctor/author didn't really have a solution other than to say we need to be aware that this can happen, to us, a loved one, a friend. It's hard enough to be in this position and watch helplessly as your loved one declines, but I cannot imagine how you would handle things if your loved one had very clearly instructed: let nature take its course....only to change his/her mind when things got really tough. Just wanted you to be aware of this possiblity as I was not. BTW, I did personally witness this with a family member...he was very at peace with the knowledge that he had a terminal illness (not PD) and was going to die. I was amazed and inspired by his grace and his comfort in the knowledge of where he was going....but then as he got worse, and sicker, and in more pain and more desperate...all of that disappeared and he became panicked, frantic, and terrified. I could not believe it was the same person and wondered where his calm acceptance had gone....the hospice nurse told me that it is very common for this to happen when we realize that we really are going to die, and soon. That moment of realization had not yet come for him when he was talking calmly about where he was headed, but when it did, his mindset completely changed. It was very hard. |
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ML, Massachusetts just voted on and shot down death with dignity in this last election. I can't speak for others but I was appalled by the vote. They voted in medical marijuana but not death with dignity. Our TV's were flooded with ads against it. Ads saying we don't want a loved one taking a handful of pills, what if misdiagnosed? Or things look bleak only to find later there was something else that could be done or depressed at the time. As the proposed law was written the Doctor could only prescribe the medicines after consultation with patient and family and after patient and family also consulted with mental health professionals in conjunction with the doctor. It wasn't proposed as a one has a terminal illness so they get a prescription along with diagnosis for use at a later date. In other words those in opposition to the law made it seem as though if someone had a head ache they could tell the doctor it was driving them nuts and get a rx. I know I'm neither a couple nor do I live in a state or county where Doctor assisted suicide is legal so I'm not who you're addressing but I wanted to let you know a little about how the law was proposed here and suggest finding out just how it is written in your state. Perhaps it will clear up concerns you have in regards to wheelchair usage or incontinence as to even being a consideration in exercising this right. It is a big consideration and truly an elephant in the room and a timely topic to be brought up. I hope others weigh in with their thoughts and information on the laws where they live for You and Yours. Take care, best of luck and hang in there. |
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Goodness, Michelle... My MIL died from PD, but she fought til the end; even in the nursing home on oxygen. So, our experience with PD and death isn't with assistance. Her faith was both a deterrent to ending her life, but at the same time, it gave her peace and drove her to fight. Now, this isn't exactly the same thing, but allow me to inject something from personal experience. I told you about our oldest daughter's death at 15 from being hit by a car. What I may not have said was that she had traumatic head injuries and was placed on life support. Again, not exactly the same thing. However, after three days, the doctors and nurses told us that in the state of CA, it was up to my husband and me to "pull the plug", so we had to decide when/if to do so. It was extremely difficult, but we signed the paperwork because we donated her kidneys. In the end, the transplant team actually turned off the machines; the doctors at that time were not permitted to do so. We didn't have to do it after all. I offer this because, to me, it was in one way easy to let her go, but, in another, it was extremely painful and caused her Dad and I countless nights of "what ifs". I remember spending 4 hours on the phone with my best friend asking over and over...did we do the right thing? Was it murder? Should we have waited, hoped for a different outcome? Then, an angel of a doctor called to see how the family was doing and at that time said, "Jane, death is part of life. All any of us can do is do our best and make peace. Be content that you did the best you could do. If you love someone deeply, you know in your heart what they would tell you to do." I know this doesn't make this decision any easier, but talking it out ahead of time really helps. I realize now that the doctor was right, but I wish we had had more time to discuss it. I think that your belief system will pay a large part in your decision; it has to. No one really knows what he/she will do until he is faced with a decision this intense. Sometimes we are given two paths to chose and making the decision as to which one to follow is made simpler at the time if we discuss it ahead of time. I know you are hurting and I know you truly want to know what to do, but when the time comes, it will become clear to you and Ben. Bless you both and I hope you are able to talk this through...at least for now...life has so many twists and turns that all we can do is face them daily...Love you. |
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The law in Washington is similar (and based off of) the law in Oregon. The Death With Dignity act was championed by Booth Gardner, a former governor of WA who has PD. The rules boil down pretty simply. You have to be: a resident; be mentally competent, terminally ill with less than 6 months to live (verified by two physicians); and able to ask for it (twice). The piece about having six months or less to live is the fail-safe built in so that you can't ask for the meds for something simple and temporary. However, I looked at the stats gathered by the Dept of Health from the patients that had made use of the law in the last few years since its inception. I think the reasons they gave were illuminating. http://www.doh.wa.gov/portals/1/Documents/5300/DWDA2011.pdf Only about 25% chose that option because of pain and suffering. The other reasons included not being a burden on family members, loss of bodily functions, loss of dignity, and loss of ability to enjoy activities. The number one reason given by nearly all the participants was loss of autonomy. I will concur that going by the stats, most had cancer (around three quarters of the total). Neurological disorders were very low, and most were ALS. That said... he has a very clear picture of the end of Parkinson's. He was a caregiver himself - twice. I can't argue with his desire not to put himself through that. The reasons he's giving me, as hard as they are for me to accept, are the same reasons the other patients chose it. I'm not sure what I'm arguing about, because I believe in death with dignity. I just don't want him to give up too soon... But that's selfish, isn't it? Still - I can't wrap my mind around the thought that to him, he thinks I'm not ever going to have to quit my job and stay home to caregive, because he figures he's going to check out before that point. My faith says that we will keep going as long as we can go on, and that the big picture on this front might be a completely different story when the time comes round. I am glad to hear this now rather than later, but it's a shock. It's nice to hear perspective from others. |