r/ParkinsonsCaregivers

Hello everyone,
I’m new here and I’m looking for some advice and support.
My dad has recently been diagnosed with Parkinson’s disease. What confuses us is that his main symptoms are not tremor. Instead, he wakes up every morning with severe back pain, stiffness, and an overwhelming feeling of heaviness in his legs. He is suffering a lot, and it breaks my heart to see him like this.
Has anyone else here had Parkinson’s that started mainly with back pain, muscle stiffness, and heavy legs rather than tremor? If so, how did your journey go?
Did Parkinson’s medications help with these symptoms? Which medications are you taking, and how much improvement did you notice? Right now, his neurologist has only prescribed pregabalin for the pain, but he is still suffering a great deal.
I’m honestly terrified about what the future holds for him. Reading about Parkinson’s has made me so scared, and I would really appreciate hearing from people who have gone through something similar. Any advice, experiences, or words of hope would mean so much to me.
Thank you for taking the time to read this.

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 💔

As we seem to be nearing the end of HWP’s “honeymoon” period, he is increasingly silent. A quiet man to begin with and he can still carry on conversations, he seldom initiates them or commenting on anything.
His speaking is mostly about details concerning safety or routines.
I fear increasing isolation for both of us. Our long-lived (40 years!) marriage is dulling and lonely. I’m trying to adjust with compassion.
What are your experiences?

howdy folks

need some advice or just thoughts

found out recently my dad was diagnosed with parkinson’s a few years back

realized a lot of things in my childhood make sense now…. i’m estimating the prodromal phase began around age 35ish. loss of sense of smell, also depression, anxiety, impulse control disorders.

so. like. what’s the next steps? he’s turning 66 this year. the tremor in his hand is getting in the way. can’t brush his teeth with his dominant hand, gets tired easily, constipated, some gait issues etc.

i read that average lifespan is 38 years following the first symptoms which would put his lifespan at around 73.

is my math mathing? is his lifespan really going to be cut that short?

give me advice. feeling rather emotionally numb. also i took 5 years off work (family care LWOP).

Hello everyone

I'm not really sure what I'm asking for right now, other than support and some insight. My dad has advanced/end stage Parkinsons + dementia/hallucinations. Up until the last 2 weeks, he was functional -- could walk, talk, and eat on his own. We took him for dinner for his birthday.

Then last week my dad was hospitalized with aspiration pneumonia. It came on rather unexpectedly. My mom had taken him to urgent care but for some reason they didn't recognize what it was. A day later he was in the ER and then admitted to the hospital. It was uncovered that he had level 2 dysphagia and because my mom doesn't want a feeding tube (he has already pulled out his IV), we have decided on palliative care.

He is going downhill quickly. Some moments he is lucid but many he is not and he has begun sundowning around 4 pm. We are trying to support my mom as best as we can and we are working through next steps -- deciding between in home hospice (which is understandably very difficult given my mom's advanced age) and an off site one of which there are few and none really local.

I am struggling. I have a full time job + 2 kids and every day I second guess myself. My dad would hate the way he is. I hate watching his decline this way but I don't see any other options. I guess I would love some support from people who have been here and can give me some words of advice. He is only eating about 2-300 calories a day and drinking maybe 1-1.5 cups of liquid. They have him on morphine. He is still on all of his other medication. Thank you. I appreciate any help.

I'm early in the journey of caring for my HWP and I'm struggling. I buried my mom earlier this year after taking care of her for four months following a stroke and I do not know how to turn into this. That was such a heavy experience and while I feel I had closure and can move past it - seeing my husband change feels beyond me. I'm grieving the person I'm losing and while normally I can be resilient and optimistic, the sadness I feel over all the small things creates such fear for the future. His cognitive decline is heartbreaking.

I find my internal capacity to cope dumbstruck and unwilling. Gah. What do you do?

He was my person. I could rely on him for everything from a shared view on politics, to household responsibilities, to shared humor, and comfort. All of that is changing. He can listen to me but doesnt't understand the way he used to. I find myself frustated and unable to contain it. Last year he thought he had paid our car insurance but had somehow gotten it wrong and when a car hit our house and totalled my car we weren't covered. At the time I thought it was an oversight, but shortly afterwards when he was diagnosed with PD I realized that was a contributing factor and now I can see the difficulty he has with cognitive processing in almost everything he does.

I know I'm venting a little but I really do want any suggestions for early support in just coping with my own sadness. He seems to be unaware of many of the cognitive changes. He experiences apathy so that could be a factor in him being unaware. I don't want to share my feelings with him - it doesn't feel fair and it shouldn't be about me (and I don't think he can process it). I need to get it together so I can be there for him. I'm trying. But I'm also not coping well. Not internally. Not really.

Thanks for listening. Any input is welcome.

My FIL was diagnosed about 12 years ago and has been in residential care for about 18 months. In the last week he has started experiencing hallucinations and severe confusion and has gone from having some slight independence to needing 24 hour supervision.

My wife believes that the doctors will treat these new symptoms, and in a few days he'll be back in the care home and carrying on normal.

I fear this is a tipping point, I'm worried that she's going to discover her father will never again be the man he was, and effectively she'll never be able to talk to the father she knew again. I'm afraid this is an irreversible step in his decline, and I'm getting ready to support her if this turns out to be the case.

Am I catastrophising? Or does this sound likely, from the collective experience of this subreddit?

My father has Parkinson's, and my mother is physically impaired due to a series of joint replacements. My brother and I are in our early 20s and are physically fine. I'm also comfortable driving in foreign countries (though they might have a heart attack letting me do that, lol).

My dad recently came into an inheritance and would like to travel as a family. There's a pretty big budget. Italy or the Southern Pacific has been discussed; frankly, with the budget I've been given, it could be two separate trips, even three. I think it's pretty open location-wise beyond those parameters, but they're not interested in the Middle East as my dad was stationed there.

Cruises seem too active, and tours create a schedule where my dad, who needs a long afternoon nap, cannot participate. Neither of them can be walking on cobblestones or up and down staircases all day and need frequent breaks. They don't want to sit on a beach for 10 days. We all enjoy local culture, history, art, and food.

Have you found a travel agent who's particularly understanding of Parkinson's? Or places you've travelled that have been more accessible than you would think?

Thank you!

Parent suddenly stopped taking their melatonin for unknown "vibes". It suddenly stopped their advanced sundowning. Like all the bedtime shenanigans abruptly ended, which confirmed my suspicion.

Now they're not sleeping at all, slightly manic, and doing more impulsive stuff. They just decided to go on a food run yesterday and got outside and into the wrong car passenger seat, unattended, didn't tell anyone they wanted to go into town, weren't dressed appropriately.

This sucks. It's either sleepwalking zombie or totally amped up manic.

This is my first post here and on reddit in general so apologies if anything is wrong and for this being so long. Im mostly looking to see if anyone has dealt with what we have for some moral support or any possible advice. TLDR at the end ~

My dad was diagnosed with Parkinsons back in about 2021. From what i understand at first they didnt even want to diagnose him with it? But they eventually did and it started this hell of a journey.

Some background: He's always dealt with being physically unstable and a lot of the gastrointestinal issues, only really had tremors when anxious or had bigger emotions. Over time he's gotten worse with balance, speech, and being able to walk on his own. Fast forward to about November/December 2025, at this point his diagnosis had been changed to PSP ( Progressive Supranuclear Palsy ) and his body started taking a HUGE downward spiral. I'm talking 3-5 falls a day with a few causing trips to the ER, eating is fairly difficult, he drools almost constantly, speech is slurred and very mumbly due to his face being twitchy and his mouth not wanting to cooperate, but he's very obviously there mentally. Now he's VERY stubborn and getting him to exercise and help himself has been extremely difficult, but he has been doing physical therapy at least once a week ( insurance wont agree to more ) and we all know that has not helped at all but my mother has been trying her hardest to get him to do things. Some of his other issues have been extreme obsessive behaviors, paranoia, and addictive tendencies. He also has started to occasionally break down emotionally and cry for very short bursts or tell me how hes proud of me and loves me and will tell my husband and me how thankful he is for helping out.

Now with his medication, he's been on Carbidopa-Levodopa pretty well since the beginning on different stages of doses, he also takes CL Extended Release. The first dosage I was made aware of was 3CL every 3 hours even throughout the night. But I believe that started a year or so ago. Back in April this year I managed to get him into a really good doctor for Parkinsons and movement disorders and she gave us so much hope and information that it actually felt like a move in the right direction. She's actually the one who diagnosed him with MSA based on his MRI and how his brain stem looked. This also started a new dosage of, i believe, 2 CL every 3 hours, but not overnight, after a very lengthy tapering down. He's currently on 3CL every 4 hours with 1 1/2 CL-ER 3 times a day with a few other medications for anxiety, spasms, and blood pressure. All of which has actually helped with his falls, just not so much anything else, which we are starting to think might be due to him abusing the CL.

His abusing of the medication started probably 3ish years in, that I know of, and it was him taking an extra one or taking them more often than he was supposed to, which often resulted in him basically overdosing himself. As of January or so, my mother has had to put his medication where he shouldn't be able to reach it and putting his specific doses in a pill case by hour, but he is still taking it early or begging/guilting us for more because he's 'crashing' and thinks it takes half an hour to kick in. We've recently started noticing that he is actually hoarding both his CL and ER pills and hiding it from us. It almost feels like we're dealing with a toddler that is addicted to pills and its absolutely terrifying. He believes he 'knows his body' and that he should be able to take it whenever he feels like he needs to but it is clearly just hurting him more and more. So we've hit this wall and we're at a complete loss of what to do and how to help him.

Im so sorry for the super long post, and if you read it all thank you. If you're also dealing with any of this I feel for you and I hope things get better.

TLDR: Since about 2021ish my father has gone through being diagnosed with Parkinsons to PSP to MSA and has been abusing his Carbidopa-Levodopa. He deals with falls, obsessions, and paranoia. Now he's at the point that hes hoarding pills and hiding it from us and we have no idea what to do to help him at this point.

Speech therapist here.

Drooling in Parkinson's is one of the most misunderstood symptoms I see.

Most people assume the body is making too much saliva. It's not. Research shows saliva production in Parkinson's is the same or even reduced.

So why the drooling?

Think of a sink. The faucet is fine. The drain is the problem.

Your body clears saliva by swallowing automatically throughout the day. You don't think about it. It just happens.

In Parkinson's, that automatic swallow fires less often. Saliva pools. Then it spills.

The drooling isn't a production problem. It's a clearance problem.

That's why so many treatments miss. Medications and injections turn down the faucet. They don't fix the drain. And a dry mouth comes with its own problems.

Here's one thing you can do today.

Most people wipe first and move on. Reverse it. Every time you reach for the tissue, swallow first. Then wipe.

The wipe becomes your reminder. You're using a habit you already have to trigger the swallow that's not firing on its own.

One small change. Try it for a week and see what you notice.

I write more about Parkinson's speech and swallowing at everydayslp.org if you want to go deeper.

When did you know it was time for memory care? My MWP has dementia and her nights are truly awful. She’s been yelling at her partner that she’s going to kill him, last night she was up multiple times yelling at her caretaker saying she was going to kill her. She was able to get her settled and back to sleep. However, I don’t think we can sustain night caretakers while she’s at home, she’s so disruptive to her partner and he can’t sleep. It just doesn’t feel safe and she’s recovering from a fall and two weeks at a SNF. It’s just so hard because during the day she can be very clear and has no idea how awful she is at night. 😞

Any suggested docs in Northern Virginia? We love my husband’s doc but she has so little time and we tropically wait over an hour for scheduled in person and online appointments. By the time we’re seen, everyone’s frustration level is through the roof and the appointment isn’t super productive. We’re new to this and super frustrated. Thanks for any advice.

Hello, my father has had Parkinson’s for a couple years now. My mom and I have been his caregivers but mostly my mom. She goes to all his appointments and knows all his meds. Recently my father has been sundowning and it’s been very stressful. He’s had problems with hallucinations and falling. It’s been the 3 of us for some time now, moving from house to house. Next month we are moving to separate homes, I’m going to be on my own for the first time in my life and I’m in my Early thirties. I’m worried about how my mom is going to be with just them two living together. She’s already has stressful days and I can tell it’s weighing really heavy on her. She works from home but still is his caregiver. Anyone have tips for how to deal with this? Any tips I can give my mom? I want to stay with them to help with my father but I also want to live my
Own life. My parents understand that and are supportive but it’s really difficult for me to see my father like this and my mom just stressed everyday.

I posted this on the Parkinson’s subreddit but it was removed (likely because it’s a difficult topic, though I’ve seen posts similar before). So the language is more geared toward there but it’s okay:

Hello all, I’ve been on this sub for eleven years since my father was diagnosed at 57. He’s now 68. I admire each of you for your proactiveness because I don’t think most people aim to learn about their diagnosis and their personal journey in the way most people here do.

Over the years, I’ve stuck to mostly practical questions. However, there’s a recurrent big one that’s always present for me, and I’d like to address as soon as possible.

My parents have not have any end of life and trajectory decision-making conversations. My mother is my father’s sole caregiver (she’s 72 and very healthy). They live in a different state than my sister and I and are fortunately moving here to be closer to us in the next 1-1.5 years. They moved from our childhood home to a condo last year so this will be another big move, which is tough. But with grandchildren on the way, we hope it brings more light into their lives. We will be able to see each other multiple times per week, and we can be more active in his care.

I’ve tried to raise this topic many times. We are all close and a very emotionally open family, so it’s not a vulnerability issue. It may be generational. But every time I raise it, it gets very tense (a mix of irritation, avoidance, this isn’t the right time, let’s wait, etc), and it doesn’t go anywhere.

I’m very concerned now because my father’s state is gradually declining (and I’m so sorry I’m naming this in this sub; mindful for each of you, but I also value your take). He had ADHD, depression, and has some childhood trauma before PD, which has strongly affected him; he’s also a big pessimist and was a huge workaholic. Before PD, work worries (mostly money) were his identity. Now, Parkinson’s is his whole identity. He goes to Rock Steady Boxing, but beyond that as immigrants, they didn’t invest in community and friendships (though many of my immigrant friends’ parents did). Anyway, we suspect the DBS is affecting his cognitive abilities. He struggles to maintain a train of thought, switches between languages, forgets a lot, messes up medications. And now, he’s needing help to get dressed in the evenings, shower, sometimes in the bathroom.

Aside from hiring home care (which there has also been resistance to to save money) soon, do any of you have unique suggestions on how to have this conversation about the future trajectory and making some of those decisions now so that there’s clarity later? I want to ensure we do this while he’s still lucid.

My parents are both big believers in living and prolonging life as much as possible, including with interventions. My sister and I are more in the gray zone (ie different take on feeding tubes). We will do whatever they want to do of course. But it’s important to talk about it ALL: the logistics, what it will look and feel like , and yes, the financial considerations. We are in the US.

I often think about how hard they worked to have a financially secure retirement. From my understanding, if my father were to live another 10 years, it could cost $40k per year the first couple and then upward $150k per year as time passes.

I often wonder— where are the boundaries and what are the thresholds? I feel that quality of life as time passes is as important in the conversation as the logistics and just doing, doing, doing.

I know this is an extremely sensitive topic with multiple takes. I know that the ethics is complicated.

Thank you for reading and being receptive.

Hi. My dad is in the hospital with his second round of pneumonia in just a few months. It seems that the infection isn't quite as bad as the first time, but his health has declined a lot. For reference, my dad also has a total laryngectomy and has been on an all liquid diet for 4 years now in addition to having Parkinson's for 10 years. Anyway, he all of a sudden stopped swallowing any liquid whatsoever on Saturday. It says in his mouth and dribbles out over the course of hours. The hospital is freaking out about aspiration and stopped all food. He can't aspirate because he has a laryngectomy. Is this it for him? Will he regain the ability to drink his food? We are now looking at hospice. His doctors do not think a stomach tube would provide a quality life experience. He is 69. He's having episodes of AFIB, cannot walk by himself right now, etc. I just want to set my expectations, is this end of life in Parkinson's?

Hi everyone
My wife has been living with Parkinson’s for the past 13 years, and over that time I started building an app to help us manage medications, symptoms, mood, exercise, and appointments. It began as a personal project because we couldn’t find exactly what we needed.
After a lot of evenings and weekends of work, the app has grown into My CareCycle: Parkinson’s, and I’m about to release a new version that adds full iPad support alongside improvements throughout the app.
It’s currently iOS only (iPhone and iPad). Everything is stored on your device with optional iCloud sync, and it includes reports that can be shared with neurologists or other healthcare providers.
I’m not a company—just another caregiver trying to build something useful from our own experience. I always appreciate hearing what other caregivers struggle with, since many of the app’s features have come directly from conversations like these.
Wishing everyone here the best. Parkinson’s is a journey none of us expected, but communities like this make it a little easier.

I'm 48 years old and my partner has Parkinson's (aged 55). We live in his native country because healthcare is affordable and good. He was diagnosed at 40. In the last 9 months he's devolved quickly. Last night I woke up to him peeing in the bedroom trashcan (and all over the floor) . I put my contacts in (getting my prescription fixed but who has the time?) and then I found him wandering around carrying scissors.

He lost his license a month ago and his Dr is good so this is a quick decline. He's still highly mobile.

How do I deal with this? He's definitely knowing what's going on when awake, but I'm truly losing it. I finally got him to let me call his Dr back after this....I think he's suddenly hallucinating. Money is no (at least not a big) issue since we have free healthcare. What do I ask for from the people who are with disability services?

My uncle (77M) died yesterday several years after his initial Parkinson’s diagnosis. In the last year or so he developed Parkinson’s Disease Dementia, and while his body was still strong, he had hallucinations, had started to wander, and got violent a few times. About a week and a half ago he was taken to the ER because he was so agitated. They couldn’t calm him down, first putting him in restraints that he escaped, and later in some type of cage. My aunt met with palliative care and eventually decided to bring him home under hospice’s care. He was sedated, and the nurse said he had 1-3 days left.

When my dad (my uncle’s brother) visited him the next day, he was already unconscious, with ragged breathing. My dad is having a tough time, feeling like he could have calmed him down if he’d seen him in the hospital - he was always able to do that - and feeling like there should have been another step of my uncle going to a care facility before hospice. The progression felt quick, from seeing my uncle three weeks ago and him being able to do things like use the restroom on his own, to palliative care and death.

My aunt and uncle had spoken before it got to this point that they wouldn’t prolong life. I trust these wishes and their decision, and I’m also hoping others who have been through this might be able to share if some of these symptoms and the progression were aligned with what they experienced. I think I’m trying to understand more about the speed of decline, the hospital not being able to sedate the patient, and any experiences with hospice for someone with PD and PDD. Thanks in advance for sharing.

with hospice for someone with PD or PDD?