Parkinson's and End of Life: An Honest Conversation

Comments · 43

• AP

  @aprilhuffstutler1419 · 3 months ago

  Thank you for telling the truth. We've been living with Parkinson's for 20 years, and it's so hard to get a straight answer from health care providers.Even doctors

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• EL

  @elenamontenegro3270 · 1 month ago

  Thank you so much for this compassionate and very matter of fact conversation.  Many of us have been worried for a long time about what dying of parkinsons will be like.

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• BO

  @boatlover777utube · 5 months ago (edited)

  He is exactly right, we should have gotten hospice sooner. My Mom lost mobility in her mid to late 70's and was willing to go to assisted living with no problem. There were too many falls though, so she ended up in nursing home side after one year. She passed away Feb 17th 2026 at age 83. It was the beginning of the holidays when I started to notice she was sleeping more (falling asleep in her wheel chair) not reading, not even wanting the TV on, and appetite declining, one time I was concerned that she had a stroke, she'd been there so long I didn't think she was going to die soon. Just having some bad days. I was able to move her to a bigger room in January, we had pizza together and she enjoyed it so much! By February she was back to not interacting much with me, so I asked about Hospice, she qualified for hospice right away they said because of Parkinson's diagnosis. We didn't think she had Parkinson's and neither did she, she was tested and put on med's for it about 75, but she didn't want to continue the meds because she didn't think she had it. WE ALL thought it was loss of balance and mobility from peripheral neuropathy, brain atrophy and muscle atrophy. Now we know it was FROM the Parkinson's progression. It also causes incontinence and bowel issue. She passed only 8 days after being on hospice, she just couldnt eat any more, it was too hard to swallow. She was surrounded by family and made comfortable with morphine and a drug for nausea. We talked of memories and love and made sure she knew we were going to ok and it was OK to "go". We really regret not knowing all this stuff about Parkinson's and there were no resource that came forward to tell us. She passed without pain due to the morphine, and I know as her daughter that's what she would have wanted. To be comfortable. I only regret not getting her on hospice earlier, it might have made her last holiday season nicer. So don't hesitate to check hospice earlier than later, we were surprised how fast it happened. I had to have hospice call my sister to convincer her to get here fast! The video is very informative. Of course it's different for everyone but a good sign to look for is not being able to use a cell phone anymore, then loosing weight because of no appetite. You might have a year or less to be with your loved one when that starts to happens. I'm grateful she was in a really good nursing home, it was very helpful to me as her soul caregiver and daughter.

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• JO

  @JoanMinarik · 3 weeks ago

  I wish I had seen this before.  My husband just died of Parkinsons.  This should be sent to every neurologist to see and share with their patient.

• TR

  @triciabyrne7761 · 5 months ago

  My BFF (friends for almost 48 years) got PD after 70 and had issues to include being inactive, obese; and diabetes), which have resulted is a rapid decline.  It's been terrible for both of us.  In less than four years she went from living at home to being in a nursing home.  To anyone reading this: actively work to maintain your health.  🍀🍀🍀

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• PE

  @PennyShootingStar · 5 months ago

  Thank you for this.  It's refreshing to see an honest discussion about what to expect.

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• HE

  @HelenaBeaudoin-hr7cq · 3 months ago

  This is the very best conversation on Palliative Care and PD I have ever seen. Benzi Kluger offered an incredible wealth of compassionate and empowering information to guide the Parkinson's community.Thank you!

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• RE

  @rentispaid · 5 months ago

  My wife died from late stage Parkinson&apos;s after 23 years since her &nbsp;PD diagnosis in NYC however we had health care proxies and end of life directives by an eldercare lawyer where I could show the ER Drs her end of life wishes &nbsp;which the Drs were happy about &nbsp;in a legal sense as I had these papers witnessed when she were dying with no hope of recovery ,she went into a coma and never recovered. <br>I may add it is very hard on family to see one live on even in &nbsp;a coma for 14 days after DNR and no food or water directives based on Drs.orders are in place ,we need a better more humane &nbsp;system <br>then wait ,cry and watch one dying for such a long time who is living but brain dead.

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• VA

  @valelliott2106 · 2 weeks ago

  My husband has been bed bound not able to feed himself for over a year and on hospice. The hospice people are wonderful. They do as much for me the care giver as they do for my husband.

• AN

  @anstrengende · 5 months ago

  Ugh,... this is heavy. &nbsp;I was diagnosed just over a year ago. &nbsp;You brought up several points that I haven&apos;t yet thought about. &nbsp;Thank you for the video.

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• MA

  @mayannjudithmaske6456 · 5 months ago

  i was diagnosed 2004, i was 43 then, now at 65 , there are still good days, i learned to manage my parkinsons so i can still function, last year was sad, i lost my job, because of an incident at work place which triggers my symptoms and i was not able to manage it, the shaking was so bad i cannot even step

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• BE

  @be013fc · 5 months ago

  Just diagnosed at 79, good conversation.

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