r/ParkinsonsCaregivers

My husband is 72 and is very tall (taller than 6’5”). I am 5’3” and very small. Over the past 4 years I’ve had a car accident and cancer and my husband has had a shoulder replacement and 2 back surgeries. He didn’t seem to be improving from the back surgeries and recently was unable to get out of bed. He ended up in the hospital for 10 days with a diagnosis of Parkinson’s stage 3. He is cognitively good except for some weird dreams he occasionally has where he feels persecuted and wakes up confused.

We thought the stiffness, etc was because of the surgeries. He also has had a hand tremor for several years but a neurologist told him that was a benign familial tremor so he didn’t worry about it. So Parkinson’s makes sense of a bunch of stuff.

He’s in inpatient physical rehab now getting speech therapy, OT and PT.

Over the past year it had gotten where I was really caretaking. He used a rollator and could get his own breakfast, but I did the other meals, plus all the wash - which was daily because there seems to be incontinence going on too. We never left the house - no where has chairs tall enough for him and he’s so stiff it’s hard to even get in a car. My point being, I’ve been stressed to all most a breaking point BEFORE the diagnosis. And now this.

The hospital people were really nice and said how they would help me and now he’s gone from there and I don’t even know if he has a doctor. The inpatient Rehab place has been very nice and said they could help us get the accomodations and the things we will need (toilet seats?) (whatever that is) but want to know where he’s going to be discharged to…..

I DON’T KNOW.

He’s huge (height wise, but slim). If he falls I’d have to call EMS. I was already worn out before this diagnosis. Because of his height I need a better bed for him. I stopped sleeping in the main bedroom because he needs a light on, gets up or uses a urinal a lot, and as an introvert, I need an extraordinary amount of alone time or I am a basket case. So he’s alone at night. I don’t want someone I don’t know in my house all night long. I don’t want to move to an assisted living place myself.

So they want to know where he’ll go (he’ll probably be there a couple more weeks). I’ve documented that I can’t be expected to be his only care giver because of our size differential. I was told by ChatAI to do that for Medicare reasons.

We have enough money I could spend $7000 +/- a month and still live. I sound selfish but I don’t want to turn our house that I’ve worked 20 years to update (slowly doing projects, replacing tile, getting it looking nice) into a hospital. I can’t live like that. I’m 70 but work out and having come through cancer, I think I’m ok.

I’m TERRIFIED right now and I don’t know what to do. I don’t want this to be happening. I know he doesn’t either. He has to be very upset. Our relationship is based on intellect and not romance. So right now it’s hard to connect. Any insight or ideas are appreciated.

Hi guys. My dad failed his voiding trial and is still retaining 50% of his urine so the plan is to discharge him with a Foley. My mom is a very, very reluctant caregiver (horrible marriage for my whole life) and I doubt his ability to manage the Foley on his own and watch for signs of infection. He has historically been very unhygienic and it's only gotten worse since the PD diagnosis. I highly doubt he will manage it properly on his own and will end up back in the hospital with an infection.

He seems convinced that just "drinking water" and "trying harder" will solve all his problems. Realistically, how difficult is at-home Foley management? How often will he need to go to the urologist for management? What are the biggest things to look out for? Has anyone seen their family member with PD and a Foley regain bladder function or is this just how it's gonna be from now on? Thanks for any at-home tips you can provide.

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

Hey it's been a few months since I updated with things. I was the person that was living with my in-laws because my father-in-law was not doing the best but ended up completely needing to leave that situation just due to how my father-in-law's care was going.

Since then we have learned that my father-in-law potentially has Para supernuclear palsy (psp) and that he pretty much Falls backwards all the time and is resistant to most of the Parkinson's meds.

A recent development was that he had to be rushed to the ER for an unrelated reason but we also learned that he currently has a fractured spine and a bruised spleen. My mother-in-law is still planning on they're Europe trip in about 2 weeks. She is bring along my husband and his brother as kind of a support network but one of the excursions they have is basically all day on a bus. And right now my husband and I are extremely concerned about his dad's ability to even be able to travel we are going home on Thursday to check in with them and basically "pack" for the trip.

I am hoping my husband is going to reach out to his other siblings to let them know that his father situation is serious enough to the point that they really need to think about hiring either help at home for him or to the possibility of getting him move to a facility that would support and give him the needs that he currently is lacking.

The mother-in-law is still trying to control everything outside of the situation we haven't like discussed on any of our jobs stop or anything with her because she always has something negative to put us down in the decisions we are doing in life.

How do you guys manage your loved ones medications? Them forgetting to take them or refusing to altogether?

Edit: I’m a pharmacist who wants to learn more about how you’re navigating these struggles.

I am only 20 My mom has had Parkinson's for 11 years, My mom is only 52.

She is declining, she is angry, she is short. My parents were always very in love, now they hardly speak, they only argue. My mom doesn't seem to care much about me anymore. My mom doesn't smile

I am only 20 and I am watching my mom leave me slowly and watching my dad lose the love of his life, I'm watching him get beat down from the disease, I'm watching her get beat down from the disease

I just want to cry all the time. I have nobody to talk to about this. I go to college away from home, I am scared what will happen to their relationship with no kids left to tether them. I am so sad. I wish life wasn't so unfair. I wish I didn't know this kind of sorrow. And I just want to be happy again, and I don't know how when this is all I can think about.

My 78-year-old husband was diagnosed with Parkinson's in 2009. His course has been slowly progressive and I am struggling with his lack of engagement with any treatment. He spends almost 14 hours a day in front of the television, has poor hygiene, does little movement (only walks between the television room and the bathroom) and has little to say about much of anything. He is under the treatment of an excellent neurologist and also sees a psychiatrist. I am struggling to stay in the marriage with someone who has little interest in life in general and, frankly, would be better off alone. He is not a companion and functions as a patient. Just need to put it out there.

TLDR: Is my 71 year old Mom's second opinion movement disorder neurologist's approach appropriate vs the first movement disorder neurologist's opinion amid a family history of PSP.

My Mom is a 71 year old female with a left side hand/arm constant tremor and extremely mild almost not noticeable gait issue on the left leg (only I - her adult kid - her two movement disorder neurologists and her LSVT BIG physical therapist have also recognized this gait issue). These symptoms started three years ago and the tremor has developed, but at her first neurology appointment two months ago and her PCP appointment three weeks ago she was very firm that she did not want to start medication because it did not bother her enough. The tremor is very obvious. She does have mild memory issues but my husband and cannot decide if those are age related. She denies them completely. She has fallen three times and she is adamant that all three times were from the ground being uneven, holes in the yard or the road being off. I was not there, so I cannot say. For background information my maternal grandmother died of PSP, diagnosed by autopsy when her brain was donated after her death through CurePSP.

After an evaluation, the first movement disorder neurologist diagnosed my mom with stage one parkinson's, tremor dominate. He gave my mom the option of medication, but my mom declined. He told my mom to continue her robust social and volunteer life and keep going with her daily exercise, but try to incorporate some aerobic activity (my mom was not happy about this because she does walk 2 miles per day but her heart rate never increases - we share apple watch fitness data with each other). Their office does not recommend the physical therapy to patients unless they are in wheelchairs, so that was something I discovered on my own and my Mom's PCP sent a referral for her.

We had a second opinion with another movement disorder neurologist in another city that my Mom's friend, who has advanced parkinson's, treats with. He did all the same evaluations the first neurologist did. He noticed the same gait issues and the obvious tremor. This neurologist does not use the stage system (he says it's misleading?) to diagnose patients and he told us he cannot clinically confirm my Mom's diagnosis. He suggested my Mom start taking carbidopa/levodopa and that if it helps her tremor we will have better confirmation of her diagnosis "under the parkinson's umbrella". My Mom immediately agreed. He started her on the medication today and it will take her 6 weeks to reach a therapeutic dose. I did ask this neurologist about aerobic exercise vs non aerobic exercise and he told us it does not matter because some patients cannot get their heart rate up (my Mom is not one of the patients who are unable to have an increased heart rate because both her PCP and her LSVT physical therapist have told her she NEEDS to do aerobic exercise). I was a little surprised by this.

A note to say both neurologists confirmed for me twice (because I asked) that they are as confident as they can be that my Mom does not have PSP.

I am very new to this world and my Mom is extremely independent. She is newly widowed and this diagnosis added quite a bit of anxiety to her world (rightly so) and I want to know if this second neurologist is on the right track. My Mom wants to stick with him and if this is who she is comfortable with then I need to learn more.

He has been diagnosed for a couple years now, symptoms for close to a decade. But while he has shuffled, he hadn't fallen. He did yesterday. His foot got caught when he was stepping up onto a porch and he tumbled.

He wasn't hurt, other than his pride. But my heart is broken.

F Parkinsons.

Hi - my dad (75M) seems to be near the end of his fight with PD. Looking for anyone with similar experiences to chime in on how you dealt with situation.

My dad was diagnosed with PD 12 years ago. He’s been on a slow decline since. We moved him into memory care facility early 2025, he was hospitalized for 10 days in Nov 2025 from aspiration pneumonia and was discharged barely able to swallow. Subsequently we entered him into hospice back at his memory care facility thinking he only had days left, then he miraculously rebounded back to pre-hospitalization.

Unfortunately he’s been really struggling over past month. He sleeps for much of the day, but when he’s not sleeping he is restless and agitated. As result he tries to get up often (including at night) but is falling 5-6 times a day, and is bruised all over his body which is clearly causing him a lot of pain. He suffers from delusions and hallucinations non stop and my mom can barely understand him now.

He is on a lot of rytary (147.5/585 5x a day) and seroquel (200mg 3x a day). He just finished a round of antibiotics for suspected UTI.

Two days ago, The hospice nurse suggested putting him on morphine (0.5 ml 3x per day) to deal with the pain, and start to taper off both the seroquel and rytary until cessation. I read this as a way to let his disease take over and let him pass with as little pain as possible.

We think adding morphine and tapering off the seroquel makes sense and will likely move forward with that. The reducing Rytary part gives me some pause. Does anyone have experience with this with their late stage PD loved ones? How did your loved ones experience it? Would appreciate any perspective!!

My FIL has been declining for the last few months, and today my wife has been called to the hospital to be with him. None of the medical professionals so far have felt able to give any sort of prognosis, but he is currently unresponsive, and not taking in food, water or medicine. When I saw him a few says ago he was more mentally present than he has been for a while, but his control over his own body was the worst I've ever seen in him, and now evidently he has essentially shut down.

People who have experienced this, should I be acting on the anticipation that these are his final hours/days?

What can I be doing to support my wife through this? I can't be with her in the hospital as I'm home looking after the children, so how can I help her from afar?

My SIL is responsible for any arrangements that need to be made regarding FIL, I just need to be there for my wife.

I am a part-time caregiver for an elderly individual, 89 years old. She will go multiple nights and days in a row without sleep. I mean, she may doze off for an hour or two, but then be awake for over 24 hours straight. She will be having hallucinations the entire time, talking to herself and tossing and turning in bed, trying to get up and walk (which is unsafe for her at this time) all night. Does anyone have any advice to help her sleep?

I'd like to see more or generate some discussion on this topic, as I've been involved with a PD patient for about a year and notice that almost all others in local support groups have spouses to whom they've been married for 30-40 years who gradually and naturally help them as they become more disabled. We have both been honest about this from the beginning: he revealed his diagnosis (I'd actually discerned the signs before), and I've been transparent about not wishing to become a caregiver, as I've already spent years of my life doing this for a family member. We have basically agreed to just enjoy life together day by day and make the most of it without planning on marriage, but I feel uncomfortable things go unsaid and need to be settled between us. '

Anyone else in this situation who would like to share?

What has been your experience with this? As I write in another post, I've been dating a man with ten-year Parkinson's for about year now. I although we agree I'm not falling into a caregiver role, I have identified and accompanied him to a few different PD support groups in hopes of him finding others with the same problem (he didn't know any or reveal his disease readily) and haven't been too impressed with any of them. In one, the emphasis is on remaining very positive and "fighting" the disease; that discussion is just regular social small talk about unrelated matters, because "we're more than our PD." It seems to me you could chit-chat with anyone, but not discuss the hard parts of PD with anyone but other sufferers/caregivers. Yet another is just either a presentation, usually by some home health agency or company selling mobility aids and lunch or everyone reading along while a member reads a print-out. The first was "early signs," and everyone was asked to share theirs. I don't see how this helped patients many years into their diagnosis. Finally, I've spend some time with a few of his good friends and even close family members, and NO ONE ever broaches it, asks, or talks about it. If I try, it's shut down. It's as if the whole world were in denial or putting their heads in the sand. Where can a patient and caregiver (or concerned friend) go for some honest talk, brainstorming solutions, or just venting to each other about perfectly normal fears, frustrations, and grief? Not to be critical, I'm sure they're doing their best, but my friend doesn't get much out of them; nor has he made friends there with whom he could walk through this in real life.

my mother has slowly stopped speaking english, and seems stubborn to only speak in her native language. i try to joke with her that she forgot to teach it to me, and for some reason she starts to speak english again (to scold me that i should’ve learned haha). but still, she seems to be struggling to tell me what her thought was.

she tells me just to use my phone to translate but this is over the phone. i used to do this next to her years ago when we’d gossip secretly. i’d record her on google translate, but i don’t know of a way to do this over the phone.

she also seems to just say a thought then hang up. forgetting to say bye, or does, but it will be one or two sentences, she will get her answer and hang up.

she isn’t diagnosed with dementia, only PSP.

she also says “i can’t. i can’t. i can’t.” if i ask her to speak in english. she has been repeating words for a year but it’s been very bad lately.

is this normal with PSP?

Hi, my father (58), was diagnosed with PD last October 2023.

I remember my dad started having tremors when he was in his 40s. At the time, I didn’t know much about Parkinson’s and didn’t realize that he should have been evaluated by a neurologist. I was only able to have him checked in 2023 when I became more familiar with the disease and finally had the means to do so.

Since then, his condition seems to have progressed very quickly, within just 3 years. I’ve read about many cases where progression took a decade or more, so it got me thinking.

2024, he could still walk on his own and do a few chores. Then by Nov of 2025, I noticed him having difficulty balancing his body to walk and his falls also became more frequent despite continuous and monitored medication.

We’ve had regular checkups with his neurologist this year, and he was prescribed with some new medications, but the effects seem to be the same, so he was brought back to his old meds (Levodopa + Ropinirole). But his constant tremors on his right hand haven’t gone away.

He can still stand, but he can’t safely walk on his own now because his alarming tendency to fall out of balance. His posture has become asymmetrical, and his right side (his dominant side) is limping. We have to assist him when walking, going to the bathroom, everything. His speech has also become slurred.

I spoke with his doctor after his last checkup, and he said it’s possible that my father could develop dementia someday, and it pains me whenever I think about it.

I’m wondering if anyone here has had a similar experience, particularly with PD that seems resistant to medications like Levodopa, or if you were advised to undergo additional tests. Really difficult to see him progress this quickly. I’d really appreciate hearing about your stories, especially if your family member had rapid progression or didn’t seem to respond well to their meds.

just venting. my father is still in the early stages, but has markedly gotten worse since i was last home from college. i'm back now, applying for jobs, preparing for the MCAT, and doing a lot of contemplating. the thought of committing to a minimum of 7 more years of school and not knowing if i'll be around if/when his PD progresses makes me feel sick. i've told my partner that i'd never sacrifice my career for a man, but here we are.

I’m trying to figure out a really strange symptom pattern my 80-year-old mom has been dealing with for months.

She has episodes of alternating sensations where she feels intensely hot or like her body is burning, and very cold with chills and internal shaking. Her actual temperature is usually normal when this happens. At first it was mostly later in the day, but now it can happen in the morning too. She can barely sleep at night.

She has Parkinson’s, but her movement symptoms are actually fairly mild. What really confuses me is that the only thing that seems to consistently give her relief is her carbidopa/levodopa. She takes IR + CR together four times a day, and after a dose she usually feels much better for about 1–2 hours. She also gets very sleepy and often sleeps during that time. Then the symptoms gradually come back. Needless to say, her quality of life drastically deteriorated.

She also has diabetes, vascular issues, an L3 compression fracture with spinal stenosis, and recently low sodium, so there are obviously several possible causes and I don’t know what is connected to what anymore.

I’m especially wondering if anyone with Parkinson’s has experienced burning, chills, internal shaking, or abnormal hot/cold sensations as an OFF symptom or autonomic symptom, especially if levodopa helped temporarily. Or if this is some crazy nervous system disorder. Her primary doctor, Neuro, Parkinson's specialist, etc. all seem to be confused.

If you’ve seen anything like this, I’d really appreciate hearing what it turned out to be and what helped.

My dads 67 and was diagnosed with stage 2 parkingsons 3 years ago. He was out on levodopa but he was having hallucinations and was passing out everywhere all the time because of it. The neurologist moved him to a different medication and he’s still passing out during the day and during random hours because of it. He does have memory issues because of the meds or his parkingsons that I’ve noticed over the last year. Can I get any advice from anyone who’s found the medication that helps them and doesn’t cause these side effects? Is there any form of treatment for parkingsons? If not, what’s the best available medication? I have no knowledge regarding this and I found this sub.