Parkinson's Disease in Hospice Care: Advanced Parkinson’s Disease

I hope this information about End Stage Parkinson's Disease is helpful for you or your loved ones.

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[florabyrd]

I wish I had found your videos sooner. My husband died of end stage Parkinson’s on January 20, of this year. No doctor, and he had many, ever explained how this disease progresses. I could have been more helpful if I had known. I was so short with him because I felt like he could do more than he did to help himself. I should have kept him cleaner. As is was, he had a UTI that turned into sepsis. He also had colitis. He was so sick. He was in the hospital from12/5 then rehab then back to hospital then hospice. I wish I had ordered hospice sooner but I thought he would recover. I am furious that no doctor ever told me how serious this disease is. He had been to several so called experts in Parkinson’s and they all failed us

[apb]

Hi Nurse Julie, thank you fir doing this video topic. My Father had Parkinson's and was diagnosed around mid 40's. Really early, he had the deep brain stimulators on both sides. It kept him going for years even though he still fell on a daily basis. He became very angry and physical. We took care of him until hospice took over in a nursing facility after he got Aspiration Pneumonia. He lived about 30 years with the disease. I pray for any families that are effected by this disease. 🙏

[bakokat]

I am watching my Hubby in hospice right now, he is struggling breathe well, he is refusing to take his meds, his bowels are obstructed, . He is cared for in a hospice home with very good people who help with his care as I can no longer physically do this. Our long 12 years of his decline are near a close, and I am heartbroken, we have been together 56 years. Even though I worked 25 years in healthcare, and cared for critical patients on life support, and my job was to care for them on life support, it doesn’t help at all because this time it is My Love and life partner.
I went though watching my mom’s decline with Alzheimer’s to very end, this is even harder.
It’s really hard to watch your hubby go through this ending. Hardest thing I’ll ever do.
But I am grateful there is hospice.
He has Parkinson’s and he has struggled with it and had a severe injury fall 5 years ago and his decline seriously began from there.

[laurafoote]

my mom passed in 2013 from parkinson's, she eventually had to go into a nursing home, i used to go everyday and spoon feed her lunch, in time she lost her voice, developed dementia, i knew when i visited her she wasn't sure she knew who i was, in time she went to the hospital where they read her her last rites and she was taken off of all tubes, she was heavily morphined and passed 7 days after. she was just 74, i am now 65 and am at peace knowing she is at peace.

[sarahe]

My mother-in-law had Parkinson’s and her first sign was falling out of the bed. After a lot of dicking around from her primary care doctor for years (I don’t respect him as a professional) she finally got her script to a neurologist. Stage 4. She was trying so hard to go back to work at the hospital. Said idiot doctor told her that she needed a COVID shot and she wasn’t at risk for clots even though she hardly moved. Less than 24 hours later she died of a blood clot at the ripe age of 59. My husband is at risk of young onset and has nonessential tremors. Anyway. It was so painful to see her go downhill with that Parkinson’s but it sucked not saying goodbye. I thought we would be in hospice but it never happened. I hope my husband and my kids don’t get it. As a former hospice nurse I have seen patients with Parkinson’s but not as many as you would think. It was heartbreaking to see my in-law with it and my heart goes out to anybody who has to deal with it today.

[leighswain]

I want to thank you from the bottom of my heart. My Dad passed away today and because of your videos I was able to stay calm and explain to my Mom what was happening. And Nurse Julie, I know my Dad is in heaven.

[mikerisner]

My father had Parkinson's and all of the symptoms described in this video are all correct. We were so fortunate to find a personal care home nearby, and the staff there provided incredible care for him ... even when he was incredibly difficult (confusion, paranoia).

When caring daily for my dad with his Parkinson's, it prepared my soul for his passing. When that day came, I was sad and emotional, but I didn't cry. That confused me. It was over a year later when I found a photo of my healthy father giving my youngest son a kiss goodbye at our doorstep. I broke down, and that release was such a relief. It sounds so strange, but it's how my soul processed the loss over such a long period of time.

[OriginalAcefanatic]

I am 55 years old and was diagnosed with Parkinson’s Disease in 2020. I knew nothing about the disease until my diagnosis. I am trying ti learn all I can about it. I am very frightened about my future.

[cpeace]

I had no idea that Parkinson’s was similar to dementia. Thanks for educating us. 🙏🏻

[shihtzuluvrtwo]

Close friend of mine, a Vietnam veteran died from this. I was his go to for all his meals. I prepped food, took it to his home, ate meals with him etc. and took his dog after he ended up in a Veterans Home. It was quite excruciating to watch a perfectly normal person get diagnosed with this illness and decline so fast. Everything you stated is what he experienced and it was very hard for me to sit by his side. I stayed til his end as his own children never showed up.

[taylorbarnett]

My dad has Parkinson’s. I’ve watched him decline over the past two years and it has been so hard. He’s still functioning and alert and fine but I wonder how long we have. I hope he never gets to this end stage

[michelerodriguezgalaviz]

Hi Julie, my Mother died April 6, 2022 from infection from UTI caused by end stage Parkinsons. I was her full time care giver and I saw the decline. It's an insidious disease. She did have terminal agitation which was hard to see. I just wanted her to not be so restless. But I knew she was comfortable. Hospice was there for us 24/7 and each nurse was an angel sent by God. I developed fibromyalgia from years of care giving for both my Mom and my Dad. I would do it all over again if I had to. I miss them terribly. Hospice is a life saver. You especially give such comfort in preparation for the end stage of life.

[avy]

I have Parkinson’s was diagnosed at 52 but remember having symptoms as early as 45..I will be cured 🙏🏻

[pambain]

I had tears viewing this, but it is also comforting to me as I see my husband refusing food. Thank you so much for your channel.

[robloxvids]

My husband has PD now since he was 50, he’s now 65. He refuses to let it get the better of him. He stays busy doing woodworking and moving all the time. It’s then really noticeable when he’s at rest. I have realized he has more movements when he watches movies or plays games on his IPad that causes anxiousness or stressors. He was playing a poker game and his left arm became very active. He had no idea. Trying to get him to move to listening to beautiful music as it made a big difference. I will be traveling this road each day with him. More because his days are my normal day so I don’t get stressed out! …this is the first time I heard that there are 5 stages…

[marybowles]

Thank you, Nurse Julie. My friend is in end stage Parkinson’s, living in a care facility. What I learned, from your video, makes me feel a little better. I see her at least once a week, and bring her lunch and help her eat, and drink, what I bring. I’ve learned what her favorite snack is (Cheezits-she can pick those up and eat by herself). I always tell her if she doesn’t want to eat it is ok. She’s non verbal now, so when she indicates she doesn’t want to eat, I know it’s because she’s not hungry. Her regular visitors are myself, another friend, and her son. Her son doesn’t want to put her in hospice, long story, but the reason is he was told they would stop some of her meds, she would still be in the same facility, same room, and hospice would would only come and check on her 2 or 3 days a week. The aides there would still be responsible for bathing her, administering medicine, etc. There is one particular aide who goes out of the way to help me friend. I agree with her son, what would the point of ‘turning on’ hospice, nothing would change other than her medication would stop. I forwarded your video to her son, he said he got a lot out of seeing it. Sorry this is so long, thank you so much.

[Lillylover]

My mother had Parkinson’s for 17 years she was on hospice for 5 years . On her death certificate was Parkinson’s disease. She lived with my family and my father. I held her hand as she took her last breath. Miss her so much

[sandydawes]

It will be almost a year this month since my husband's passing. He was in a nursing home for six years after having spent ten months in a geriatric psych unit. His diagnosis for Parkinson's was official 20 years back. Upon looking back, his symptoms were evident long before in his late 40's.
Almost three years ago, he was admitted to hospice. All of your comments described his final months at the nursing home where he was cared for . Caring for him became more than I could manage on my own and watching him decline was heartbreaking.
It is because of people like you sharing your knowledge with us that we can become better at helping our loved ones to pass with dignity . Their quality of life is still important and imperative. Thank you Julie for your service, and to all of your associates as well .❤ 😢 😊 ❤

[mauriwestmoreland]

Thanks Julie. My best friend got the diagnosis herself recently & she's one of the best people I know, with a beautiful soul and a smile for everyone.

[gglovesjesus]

My beautiful mom passed in my home with hospice care, just five weeks after we lost my dad unexpectedly. I always felt tremendous guilt . Did I do everything I possibly could at the end ? I asked myself this for four years after watching a few of your video's it has helped me realize it was a normal death process and a blessing to be with her in her final moments .Thank you kindly.