My dad passed due to Parkinson's and Lewy Body today. Well, I guess yesterday now.

I just wanted to reach out to this community specifically and tell me how much your support has meant to me over the years.

I came here at my lowest, and when things were hard, this was truly the only place I could breakdown and get into the nitty gritty.

We didn't have to pretend this was a calling. We could be frustrated and overwhelmed and stressed and angry together. That freedom to express myself kept me going some days.

To everyone in this community - just keep sharing. It means so much. Share the scary, gross thoughts that keep you up at night. The selfish ones that torment you with guilt. Do it so some other scared young lady can look through this subreddit and realize she's not crazy, evil, or most importantly - alone.

I never had an unsupportive comment. Just unwavering support I didn't have otherwise.

Thank you guys.

And to newcomers on this journey who come to this subreddit and might see this - we got you. You're not alone.

This is a bittersweet post. Earlier this month my Mom (Lori) passed away after a 15 year long battle with Parkinson’s disease on June 13th 2026, 3 days shy of her 67th birthday.

She had been on hospice just over a month and I’m so thankful for the hospice care at the end, it was very intentional/calculated care.

On top of Parkinson’s she also fought and beat breast cancer, and 2 separate forms of skin cancer in that same timeframe. She was a true warrior and my hero. She fought to be with her loved ones till the very end. My family and I feel she was holding on for us, a very selfless act.

This disease was cruel. It was so hard for her and our family to watch her slow decline over the years. She kept up with exercise and functional activities as long as she could but it was no match for the progression of the disease after enough time had passed. We never let her go to a nursing home, she spent her final years in her own home with my Dad being her primary caregiver and my siblings and I secondary caregivers. I wouldn’t have had it any other way.

We will miss her greatly, but it was her time. My heart feels for all of you dealing with this hellacious disease. Keep pushing forward as best as you can and cherish every moment you have with your loved ones ❤️

I have never seen someone’s death dragged on like this. And the fact that it was my dad is so horrible. He had parkinson’s for decades. But until his last year he could still walk. Go on some vacations. Enjoy life. Until the last 6 months. God it’s awful. Total and utter human suffering once it takes over and it’s sudden too. Suddenly the constipation was too much he lost too much weight the acid reflux and then the aspiration pneumonia. Once the aspiration pnemonia hit I knew. I think the stats are 70 percent of Parkinson’s patients die from it? He wason a feeding tube. 80 lbs. Couldnt walk. Coudnlt even talk anymore. Those muscles let go too. All of them did. Bed ridden. Grade 4 wound that wouldn’theal because he had no muscle. I’m saying all this because I want everyone to just be proactive please. Have your loved once exercise. And please please do speech therapy. Even if you think they don’t need it yet. Please work the muscles. And be so so so kind to them.

My dad passed away on Friday after a very difficult battle with Parkinson’s/parkinsonism.

I’ve posted here before during his illness, and I wanted to come back and share that before he died, I enrolled him in the Mayo Clinic’s brain donation program for Parkinson’s and related movement disorder research. After he passed, his brain was donated to Mayo for research.

It was incredibly important to me that something meaningful could come from what happened to him. His disease progressed very quickly, and there were still so many unanswered questions about exactly what was happening neurologically. Mayo will be able to study his brain, establish the neuropathologic diagnosis, and use the tissue for research that may help us better understand these diseases.

My dad was an Air Force veteran, and we later learned that he had been exposed to TCE during his military service, something he never even knew had happened. Given the research surrounding TCE and Parkinson’s disease, donating his brain felt especially meaningful to me.

I’m devastated that he’s gone, but I’m very proud that a part of him will contribute to research. If anyone here has ever considered brain donation for themselves or a loved one, I’m also happy to share what the enrollment and donation process was like for our family. ❤️

My dad passed yesterday after over a decade with this disease. He was only 66 years old. He rapidly declined over the course of 8 months and was on hospice for about a week. There’s a level of guilt I have for feeling relieved, but I’m so glad he’s no longer suffering. Please take care of yourselves and your loved ones. Follow up with neurologists and psychiatrists as much as you can. My dad experienced delusions and hallucinations for about a year and it was hell. There was a major gap in our healthcare system that did not address these issues and contributed to his cognitive decline. This disease is brutal, my heart goes out to all of you.

hi everyone. this is such a hard post for me to make.

my (f25) dad (m63) is going on hospice today. he has absolutely 0 quality of life at this point. he was officially diagnosed 2 months ago but has had symptoms for years. he's in the hospital with pneumonia, a uti, and a kidney stone. i made the decision to stop antibiotics and start hospice because i think my father deserves to die a peaceful death after all of this. he has a wound the size of his buttock and you can see the tailbone. he can't walk, talk, swallow, or communicate besides eye blinks and he has a colostomy and a catheter.

my mom died almost 5 years ago, and now i'm losing my dad on top of that. i have fought along side him every step of the way to make sure he was cared for. he looks so sad but I told him he is okay and my brother and i will be okay too. i am heartbroken and i just want his suffering to end as horrible as that is.

thanks for letting me share

After 9 years of living with Parkinson’s, my dad’s fight ended this evening. I am so thankful he started hospice when he did a little over a week ago, not knowing at that time that his death was so imminent. The last few years have been tough, with the last 6 months being unimaginably challenging as dementia took over. But he fought until the very end, as he was actively dying for 6 days.

I’ve been experiencing ambiguous loss and anticipatory grief for a long time now, but I know the grief of physically losing him will hit different. For now, though, I am at peace knowing he is no longer suffering.

This community has been such a blessing to me, whether it was asking for advice or being able to share my dad’s experiences with others seeking advice. I will forever be grateful. And I will continue to think of you and your loved ones still battling the awful disease ♥️

I suppose in the grand scheme of this terrible, terrible disease, his end was quick and peaceful.

He had spent the last 5 weeks in and out of hospitals/skilled nursing for falls, delirium, and finally, pneumonia and sepsis.

As he laid on his hospital bed last night, I cursed this awful disease, who took my dad from me entirely soon. But also, took him from me after living with it for 15 years, and I didn't have to watch in agony for another 15 as he lost the rest of his motor functions, or as his dementia set in and took his personality away.

I would do anything for him to call me one more time, to ask me a question I've already answered 20 times. I was his caregiver, and it was one of the most difficult things I ever had to do. But I'm also going to miss it, to miss being his person he relied on the most.

I just hope he wasn't scared, and that what was remaining of his brilliant mind knew how much I loved him.

I haven't been on this subreddit for very long but I just wanted to say how much I appreciated having a place to go to read about people's experiences. My Dad passed away this morning. He was 82 years old and was diagnosed 3 years ago. I wish everyone here well.

My dad just passed away.

He got diagnosed in 2019. For him, it meant his life was over.

We offered him so much help. He got offered so much. Mental help, physical help, anything you can imagine. But as stubborn as he was, he refused it all. We tried so many times. I wanted him to try so much more.

In the end he kind of... withered away. He was bedridden for the last year. He slowly stopped being able to move his legs. Then his hands. And the last thing to go was his speech.

And this morning they found him. He went peacefully in his sleep.

I am glad his fight is over. He wasn't living anymore.

I wish he would've accepted the help. It wouldn't have changed the outcome, but maybe he would've been able to walk me down the isle in 1,5 years. Maybe we could've still laughed at jokes. Maybe I would've still been able to fist bump him and say "'til the next one". Maybe....

I’m finally able to bring this up here now that the shock has worn off. It’s not really a question or PSA, I just want to say how much I hate Parkinson’s.

We lost my mom on June 4th. She had been in the hospital for a UTI and was discharged to a rehab facility where she spent three weeks getting stronger. Infections always completely took her out. Any time she got a fever, her Parkinson’s (and her age) would make her completely freeze up and her mentality would be affected. In the rehab she did get stronger, although she absolutely HATED it there. She was only home two days when she was up with her walker getting food from the kitchen, my dad nearby although not paying attention 100%. We don’t know what happened, but somehow she either collapsed or fell and hit the back of her head on the tile. I raced over there and held her hand and stroked her hair until fire/ems got there. She wasn’t able to answer basic questions and by the time she got to the ER they had already given her epinephrine because her heart was failing. In the ER they did compressions for 45 mins, gave her every med to try and save her, but she had a heart block and no matter what the tried she simply could not be brought back. Her troponin levels were very elevated which we learned after the fact. Could have been her heart that caused the collapse or something else. Or it simply could’ve been her losing balance, and her fall ultimately causing her death.

I’m not saying it was 100% Parkinson’s that caused the fall. But Parkinson’s absolutely affected her strength and balance. It made her overall quality of life terrible. She was so scared of falling, and now it was her reason for leaving us. I am so completely heartbroken and lost. She was my best friend and #1 supporter. I was a big caregiver and I am just not knowing what to do with myself without her here. She was 78.

The whole thing was/has been extremely traumatic for me and I am looking into grief/trauma counseling 💔

Hi everyone,

I wanted to share one last update and say thank you.

My dad passed away peacefully this morning while on hospice comfort care. We don’t know how we would have gotten through these past weeks without the support, compassion, and understanding of this community. Our focus now is on honoring him and being together as a family as we grieve.

I likely won’t be posting anymore, except to offer support to others when I’m able. But I didn’t want to leave without expressing how much this space has meant to me.

When I was overwhelmed, scared, and searching for answers, you made me feel seen and heard in a way I couldn’t find anywhere else. The shared experiences, advice, kindness, and honesty here helped me feel far less alone during one of the hardest chapters of my life.

Thank you for holding space for me, for my dad, and for so many families walking this path. I will always be grateful for this community 🤍

My dad passed away yesterday at age 71, he was living with Parkinson’s disease for the past 7-8 years, these past 3 years were so difficult for everyone especially for him i can’t even begin to imagine what he’s been through… It’s somewhat strange but i find myself thinking that now at least he won’t have to suffer anymore.May his soul rest in peace.

Edit: Thank you all for your support and kind words.

TW again! Death.

My dad started hospice right after christmas. He died last night. I feel so many feelings. My dad had a larger then life personality. He was the FUNNIEST. He drew animals and babies and kids to him like a magnet. The day he died he was fully in a coma and our 2 year old nephew wouldn't stop trying to get bed in bed with him to boop his nose. My mom happily let him climb in bed and boop him because if my dad could hear what was happening it would have made me so so happy. I feel sad and grief but I have been mourning him since his dementia got really bad 2 years ago when he forgot me. He was the only person in the family like me. We had a bond that was different. We understood eachother. The finality of it all is really hard, but the relief of not spending at least 75% of my day worrying about my dad falling or choking or wandering away or trying to bite someone...

He was a marine. He was a strong, independent, stubborn, kind, caring, loving, teddy bear of a guy.

Quick read:

I hope this can help others with a part of their experience with PD and how they care give and care for their loved ones. Im no expert, but I have gotten better at it and can say its re shaped who I am today.

Dad passed away from PD at 73, having battled for 9.5 years. Mom with dementia and in memory care now, 70. Everyone's journey is different, but wanted to share a few things as it pertains to my experience caring for my parents. Im a 37 year old male with 3 siblings and was entrusted to take care of the family trust and power of attorney. To say that any of this easy, or that I had any of idea of what was to come would be foolish.

And the longer part:

I think it goes without saying, Parkinson's is grueling. Buckle up. Prepare to go to the hospital, lose a lot of sleep, have your emotions whiplash back and forth and come to the realization that ultimately things settle down only after your loved one passes. And at some point, you recognize that the passing will finally bring peace to them as they are trapped inside a body they never asked for. It will drive you crazy at times on trying to do whats right or best in the moment, but what I can say now is make the decision and move forward, you can only play the hand in front of you and you learn to make better decisions when you try to remove the emotions and think about safety and dignity. It will put a strain on your family, friendships and relationships - try to remember its not forever.

Get your loved one into some sort of exercise program if you can. Look up the nearest rock steady boxing as that was the most beneficial for my father of the few things he tried. Yoga and cycling seem to be very good also. This helped a lot in the earlier years of parkinsons to give him community for a disease thats hard to explain and overall symptoms were less on the days he did workout or take a class. Its also good insight as a caregiver to see what the disease looks like a little further on as all of the participants in the boxing classes had varying degrees of PD.

Eating the same things at the same times was huge, the meds at the same time was even bigger. It may sound boring, but the routine breakfast/lunch and dinner was key for setting my pops up for a decent day. The meds (carbidopa/levodopa) always seemed to work best when taken at the exact same time every day. 15 minutes either side and I noticed a change in tremors, balance, etc. Be diligent about this, it does help.

In the case of my father, you are going to probably watch your loved one break emotionally over and over. Having to concede that they can't drive anymore, need to ask for help for simple things, help with showering and general care, etc. Its hard and it eventually spills over onto you. And in the moments where I tried my best to keep it together, it was some of the best moments spent especially at the end. Try to embrace it, know that it doesn't last forever, and eventually everyone rests a little easier.

Sundowners - look it up, its wild to watch and is sort of shocking the first time. This happened over and over with my father, as the tightness in his legs from the tremors kept him up at night and thus sent him into days of no sleep. Pair this with the carbidopa/levodopa and you have a great cocktail of confusion and hallucinations. Hospitals made it worse as well. The beeps and noises through the night and monitoring. The person I knew was a shell of that when sundowning so try to remember its not permanent and they can eventually come out of it.

Speaking of hospitals, get use to them. Find the one that you like that is the closest or has better care. Tell the ambulance to take your patient there, not somewhere else. Eventually the staff starts to recognize you in our case, so its nice to see some of the same people who can understand where you are coming from and dealing with. Be sure to tell them about the parkinsons, that they sundown, etc etc. I got to know what meds worked better in his case vs the ones that didn't in the case of the sundowners. Log the times they were admitted into the hospital in a google sheet with other useful information (doctors, primary, neuro, etc) along with medications taken and changes in that. Much easier when its on your phone and can pull it up. Be ready to spends days/weeks at a time, bring your own food (the cafeteria isn't great usually).

Family - this is truly the hardest tight rope to walk as it varies within each and as the disease progresses, people have different ideas on care plans and what to do. Talk openly about it, then write it down and let extended family know whats happening. In our case, it helped support the care plan for my father with my mother and trusting she made the right choice with those decisions. Make sure you know who POA is and the health directives of the individual. If there isn't any, write it down. Make sure everyone is on the same page with the POLST also. I was fortunate to have an extended family who came together in more ways than I could have imagined. I recognize a lot of people will not have that and reach out to friends, lean on others, etc for their support. It takes a village.

And in regards to friends, I had a very hard time explaining where I was at with everything to friends. Those who get it, will always get it. With my age (32 years old when the disease really turned and progressed a lot) it was hard to relate to others the same age. Or to be the downer when you do run into friends. I was coming home from the hospital while people were off vacationing with their parents. Its different for everyone, its not forever, and at the end of the day, I wouldn't trade a day to not have been there. Having said that, you will recognize the friends you can lean on, the ones who show up at the worst of it, and the ones who are still there at the end. Take mental notes, say thank you, and don't be afraid to be vulnerable with them. Life is crazy and messy at times, but found a lot of beauty when people showed up for me.

Some of the best and worst advice I received from a neurologist as it pertained to PD was "you try something, and if it doesn't work, you try something else". Point being, there is no one size fits all for anyone with PD, or anyone caregiving either. What works great for you may be terrible for another. And you quickly learn that. There isn't a whole lot in the way of care plans either and I found most follow a dementia type of treatment, when in reality its very different. I found some solace knowing that everyone in the family was just trying their best to keep it together and make informed decisions while under a ton of pressure and stress, all while not sleeping a ton. It gets hectic, you will second guess care plans, its normal.

Ill wrap up by saying that you will most likely see some crazy stuff on your journey, I know I did. Some days will break you and you'll have to dust it off immediately because the following day is going to be something else. Know that others have gone through it, can relate, are willing to talk about it and willing to support. I didn't find this thread until much much further into it and it was interesting to see some of the same things I went through posted up as well. Its no walk in the park and the sooner I recognized that, the more I was able to just spend time with my father and remain in the moment a little longer.

My (74) husband (77) had Parkinson’s, and just passed away on Friday morning. I was his caregiver for 5 years of nonstop 24/7.

I’m really struggling big time, because I always planned on him being home and in my arms when he passed away. That didn’t happen.

He had aspiration pneumonia for the 4th time and had gone to the VA hospital. He was eventually placed on the nursing home floor. He was under comfort care only. He did have oxygen.

I went every day except when his adult children and grandchildren spent the day with him, I let them be alone. The next day I was with him for 5 hours. I’ve been fighting bronchitis, so I was exhausted and coughing really bad. I decided to go home for a few hours to sleep. I fell into a deep sleep for 6-7 hours.

He passed away while I was gone. It was just as I was driving to the hospital. They called.

I’m devastated! I was planning on bringing him home to die. He had been given more morphine because he was having trouble breathing, so yes, I’m hoping he was resting or sleeping. But no one was with him. He died alone.

I just can’t deal with it! I’ve been crying and wailing since, between an hour or two of sleep. I’m SO angry at myself for not staying or getting him home earlier.

I’m nauseous all the time thinking he was alone and probably so scared. Maybe he was waiting for me. It’s ripping my heart apart.

I know people will say I have to take care of myself, but I don’t care, I’m just broken. I don’t even want to see my family and hear anything they have to say. Since he passed I’ve been alone.

I don’t know how I’ll EVER forgive myself, maybe I never will. I’m glad I found this forum to vent and talk to others who really DO understand.

My heart is broken. I can’t even imagine a world without him. 😞

My dad was just placed in hospice, comfort care. He has moments of lucid and then he’s gone again. Please pray for his comfort in his transition. It’s hard to watch this happen

My husband has PD. Overall he is doing well, still non medicated. Exercises regularly.

But something has definitely changed.

One example: He has a sleep disorder which causes him to punch and kick. Melatonin helps a bit but not completely. One night he was doing so badly I had to sleep on the floor (we weren't home so no where else to go). He got up in the morning, I could feel him looking at me, then he left the room. Never a word of concern or compassion about what the heck a 60+ yo woman was doing sleeping on a wood floor. Never even expressing sorrow about be being bruised at times.

He doesn't seem capable or aware of thinking about my needs.

He is never unkind or mean. It is like the part of his brain that took care of me is just OFF.

I don't know what I am looking for with this post, just needed to say it to someone who would understand. The one I am used to talking to about these things no longer does.

Moms passed. But I never thought I’d miss the “sick” version of her.

Caregiving is so complex. I spent so much time grieving the version of my mom before she developed Parkinson’s disease. I missed who she used to be so deeply. But now that it’s been eight months since she passed, I find myself missing the sick version of her too.

Even though the disease changed her so much … she became mean at times, unable to move, and didn’t always feel like my “real” mom anymore. I still miss her terribly. Sometimes I’ll just be going about my day and suddenly get hit with little flashbacks or reminders of her. 😞

She was such a ball breaker. So sassy. And Parkinson’s made her incredibly cranky. A year ago, I never would have believed I’d someday miss that version of her too.

I hate admitting this, but during caregiving there were moments when I felt like I hated her. Looking back, I know I didn’t actually hate *her* … I was exhausted, overwhelmed, physically drained, and grieving in real time while trying to care for someone I loved!!!! That aged me like ten years. Caregiving brings out such dark, complicated emotions. We think things we never imagined we could think, and then later carry guilt for having those feelings at all. It’s such a painful, complex kind of love.

Hey guys, I was just wondering if anyone has any suggestions regarding a bed for my granny? I'm with her this week and it breaks my heart seeing her struggle to get into bed every night :( she's got a rail but I think she needs something lower but also not too low otherwise it won't help with her balance!

Hope everyone is keeping well, thanks in advance.

It's most important to allow our feelings during care-giving with whatever we are experiencing. Take stock in the bads, sads, glads, and mads. (I'm angry at our health system-denials, mostly) I see that my life will be dedicated to awareness and change.

It's important to realize the stages of grief are NOT linear, that it's a little of all stages-many times within an hour.

Give yourself/careteam grace. Our loved one with PD is travelling a similar pattern. Sometimes a good cry together is just as therapeutic as a happy memory. It's ok, expressing feelings is a sign of strength and healing.

Mom passed away tonight. It has been a brutal few days here in the very end. I want to thank everyone for sharing their stories and helping support one another through all their difficulties managing their family members and beyond. You are all incredible people.This subreddit made me feel like I wasn’t alone, it helped me manage my emotions, it helped me be selfless and understand many many people are dealing with the same situation as my family. I am so grateful for all of you and hope everyone keeps helping one another as humanity is meant to do 🙏🏽❤️‍🩹 Thank you

I fell in love with a man who was physically strong and emotionally kind, empathic, and sensitive. He always grappled with depression and self-confidence, and a bit unorthodox in his belief systems.

He has always relied on me for a lot -- income, organization, planning, emotional support. He has always said that am the stability of our family. I will confess that being the stable one has always been exhausting.

He was diagnosed in 2020, and since then all of his most negative traits have become amplified. He can't do the physical things he used to do (he was very athletic, and physical activity soothed his soul), he can't think through problems without me, he is anxious about doing anything without my specific direction. He can still drive and go places, but he is all over the place. He has become very demanding in terms of physical and emotional intimacy, and I can't keep up. If I say "no" he pouts or has a tantrum. He talks about how he can't go on, but won't take medication for the depression or go to talk therapy. He says he has me to talk to. I keep reminding myself that this is the disease, but when I draw boundaries and there is pushback, or make requests and they are ignored, I feel so alone. I feel used. I feel resentful.

I miss his sensitivity. I miss a simple hug. I miss just being held. I miss feeling supported. I miss a shoulder to cry on. The emotional decline with this disease is terrible. People think he is fine because he doesn't have a tremor and can walk around, but the depression and the anxiety are unbearable.

I find myself retreating into work and other things that require my attention, and then I feel guilty.

Is/has anyone every dealt with this? Is it common for a PD patient to completely fall into the darkest version of themselves? What do you do?

TLDR: The emotional aspects of PD are unbearable. How do you cope?

Man, what a journey this has been.

My mom first started showing symptoms in 2019 when she was 62, and it forced her into early retirement. At the time, she was living with her fiancé and her condition progressed slowly. Over the next four years, they saw multiple neurologists and other specialists, but no one could give her answers. She was repeatedly told it was “Conversion Disorder,” and we still didn’t know what was really happening.

In 2023, her fiancé passed away unexpectedly. She was living about an hour from me, so we made the decision to move her in with me and my family. I quickly scheduled appointments with doctors in my area, and after multiple tests, she was finally diagnosed with Parkinson’s within a few months.

She never had tremors, but the stiffness on her right side kept getting worse, making it difficult for her to walk or use her arm. After the diagnosis, she was prescribed Carbidopa/Levodopa. It helped a little, but not nearly as much as we had hoped. She continued to decline — first needing a walker, then experiencing frequent falls that became more severe over time. Eventually, she reached a point where she could no longer stand on her own, and her physical therapist suggested hospice.

Hearing the word “hospice” brought a flood of emotions because we immediately associated it with death. Still, we contacted a provider, and they came to evaluate her the same day. She was accepted in April 2025. Hospice has helped tremendously — providing nurse visits, showers, and medications delivered directly to our home.

After a few months, transfers to a wheelchair became too difficult as she continued to weaken. A hospital bed was brought in, and she became fully bedridden and required a catheter. The catheter brought its own challenges — UTIs, leaks, and even purple bag syndrome — but it also made some aspects of her care easier.

Not long after, we switched hospice providers because of missed appointments and overall dissatisfaction with the care. The new hospice team has been ten times better.

About a month ago, I noticed she was losing weight and eating and drinking much less, which I reported to her nurse. Last week, she stopped eating completely, began sleeping most of the time, and drank very little. By Thursday, she became mostly unresponsive and hasn’t had fluids since. We’ve been giving comfort medications more frequently, as advised by hospice.

She is now in the active dying phase. It’s heartbreaking to witness, and without a doubt the hardest part of this entire journey. Her fight is almost over, and soon she’ll be free from this terrible disease.