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Decision to end parkinson's treatment
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pddaughter posted:
Surely my 82 year old mother diagnosed about 8 years ago cannot be the only patient deciding to do this. She has landed in a nursing home( put there by her husband). She made her wishes clear prior to her nursing home placement, but those wishes were co-opted by the facility doctor. Through a long legal process, she was "allowed to end taking the drugs". Her nuerologist told her when she was of sound mind(she is not now due to parkinson's dimentia), nature would take its course in aproximaely 10-12 months. He assured her she could be kept comfortable. PLEASE , if someone is out there share your experience. If you are a son or daughter as I am trying to honor final wishes you have my utmost respect and admiration. Dr. Stacy if you could weigh in? share experience. Thank you so much
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worn1 responded:
Dr Stacy maybe you can answer this.
pddaughter I hesitate to respond. I know you asked for a care taker response but I am going to respond as I have PD.
most of the posters here have pd. We know this disease is slowley destroying us and we see what is happening but can do nothing to stop it. We keep hoping for a miracle and pray no one else has to go through this. We are fighting this disease. We have not given up so it is hard to respond to your post. Before I was diagnosed with PD I did consider suicide. I was in so much pain. I could not walk with out falling, write or use my right hand or arm. My site was affected along with memory, ability to learn and comprehend what i read. With that information given to you let me respond I am glad to hear someone taking your mothers desire to heart. I have questions.Did she request the withdrawal of drugs before she found out she was going to a nursing home? How are they going to keep her comfortable? 10-12 months is a long time. Are you going to be able to watch your mother die? Are you transfering her to a hospice? If she is still in a nursing home try to transfer to a hospice. I assume she has forms signed stating she is DNR. Have you spoken to a support group and/or clergy. If you have not I suggest you do so. It sounds like you need emotional support.
I know this is not what you wanted to hear.
w
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
Hi pddaughter....I can feel your frustration and helplessness in your words and my heart goes out to your mother and you. As worn1 has said, I would hope that her wishes have been well documented before her dementia set in. I can respond as both a pd patient AND a retired RN Case Manager. The last 8 years of my employment was concentrated in geriatrics, with a strong focus on Alzheimer's Disease.

Your mother has every right to have her wishes carried out by her current health care providers. Does her Neurologist have any privelges at the nursing home wihere she is living now? I would think that he could intervene on her behalf to ensure that not only will her PD meds be discontinued in a responsible way, but that also her symptoms (ie pain, anxiety, etc) be relieved with appropriate medications. This is her legal right. I assume you support your mother and father with these decisions?

I totally understand your mom putting her foot down and refusing more PD meds. Often, the side effects sort of make a patient and family decide that taking the medications just isn't worth putting up with the side effects. I don't think you told us how long she has had PD, but it sounds like she had just "had enough."

I am not able to tolerate the PD medications that have been tried by me and my Neurologist. I am extremely sensitive to meds and side effects, and it is for this reason, I have reached the same decision as your mom. We are currently able to pretty well handle the PD effects with medications that help me cope with them. My other physicians support me with this decision and so me and my health care team are using palliative care for me. This isn't the same thing as hospice care.

I do agree with worn1 that perhap hospice care could be the appropriate type of medical care for your mom at this time. Is the nursing home abe to support and provide this care? If not, what are your other options in your community? Inpatient or outpatient hospice care? Either way, your mom and your family will receive support in many areas, not only medical/nursing care, but emotional care as well. The longer a patient is in hospice care, the better the benefit for all involved.

I have given a long response (with only one cup of coffee so far!) and I hope i have made sense. I wish you and your mom well.
 
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pddaughter replied to lovedogs1955's response:
Thanks for your thoughtful response and my best to you. The other response I got goes right to the herat of the problem. Even mentioning "suicide" is so off base. My mother is 82 years old. I support her in her decision and in no way is she a "quitter" or not fighting the disease. Sad and judgemental is the other response. I will never give up supporting my mothers right as a human being to make her own decvisions. Sadly the state of maryland belives if you are married you are no longer autonomous. But fight on I will. thanks again. Anyone you were a nurse to- was a lucky patient.
 
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lovedogs1955 replied to pddaughter's response:
Thank you pddaughter....throughout my career and my life I have always believed in the right of a patient of sound mind and also of the familly entrusted to act on her behalf when he/she is no longer able to. Was your mother able to sign health care directives before dementia set in? If so, who has been appointed as her Health Care Advocate? As I re-read your initial posting, I realize that I am not 100% clear on your father's opinion.

I also live in Maryland and I worked as a nurse in this state for over 30 years. It was always my experience that the Advanced Directives carry considerable weight, especially if the physician and facility believe in them. Don't give up. Your mother is fortunate to have you working in her behalf. It's so sad that as a population, we consider our pets' well-being more than our humans'.
 
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knollgirl responded:
pddaughter, I want to first say that I commend you for being strong and supporting your mom in every and any way you can. I am watching my grandfather die of Parkinsons, and he, too, can not tolerate the meds. He stopped taking the PD meds last week, and it is pretty clear that he is at the end of his battle. I wish there was someone who could tell us what we could do to help. It is such a helpless feeling watching someone you love with all your heart die. I hope that you are able to find much support within your family and friends. Best of luck to you and your mother. Please keep us posted.
 
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lovedogs1955 replied to knollgirl's response:
knollgirl, has anyone discussed hospice care for your grandfather? This offers so much support in so many ways, not only for the patient but for the family as well.
 
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DUKE MEDICINE
Mark A Stacy, MD responded:
Dear pddaughter,
I am so sorry to be late in answering your note. (Thank you lovedogs and worn1 for your, as always, caring and helpful advice)

The decision to stop living is many times as amazing as life itself. There have been a handful of times in my practice in which I looked into the eyes of a person, and knew he or she would not be coming back to my clinic. Although I believe I understand the reasons for such a decision, I think it is amazing that someone can shut down and pass away. Lovedogs is right to suggest a Hospice evaluation. The saints who volunteer and work for Hospice understand this much better, and can be helpful in determining whether your Mother is ready, or if there are other things that she would like to try.

I would also look into her medical record for signs of additional, treatable illnesses, such as pneumonia or a UTI, and talk to her about sleeping. She may not be able to sleep in her new surroundings, and the facility can possibly make some changes that would help. Lastly, please know that many patients feel devastated when they are "put" in a care facility. I would talk to her about her sense of abandonment - and let her know you will never leave her.

Best wishes.


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