r/ParkinsonsCaregivers

Hello, my Dad is 78 and was diagnosed with Parkinsons about 8 years ago and has since developed LBD. He is in stage 5 of Parkinsons but thankfully still has the ability to talk, walk and do some basic things with his hands especially when "on".

The last sort of 6 months he has been developing severe Akathasia and Thermodysregulation and has recently developed a tremor (he has the stiff kind of Parkinsons so this Tremor is new for him).

He's also been on Mirtazapine 15mg for sleep and Safinamide 50mg for about 2 years together. Upon doing my research, I've noticed recently that this combo can be quite dangerous as it can cause Serotonin Shock Syndrome. Plus, although SSS is life threatening so I assume he doesn't have that itself, I also read that you can have a long term mild Serotonin toxicity and some of the symptoms are...you guessed it... Akathasia, Thermodysregulation and Tremor.

I'm just wondering whether I'm being silly here and looking for a non-Parkinsons reason for some of his Parkinsons symptoms or if this makes sense at all and I should mention it to his doctors.

Thanks in advance for any help.

I know this is impossible to answer so I’m really just looking for individual experiences. My FIL has had Parkinson’s for about 20 years, he’s almost 80. He’s in stage 5 I think. Spends about 23.5 hours a day in a recliner, manages to force himself on one very dangerous 3-5 minute walk a day (refuses assistive devices) and has a lot of falls related to blood pressure drops. He’s got a catheter as of three weeks ago and is on hospice as well. Now he’s fixated on pooping. Waking us up at all hours to get on the bedside cammode and most of the time doesn’t really need to go. He’s definitely more and more confused and his short term memory is poor. He still eats pretty well though and has not had any type of infection yet. I have noticed for the past month he coughs more after eating and drinking. It’s truly amazing to me he has not broken any bones either despite some really bad falls. I’m beginning to wonder if this will just go on and on. I’m just wondering- how long have your PWP lasted in this stage? When could we expect he won’t be able to get up at all? In a sense I think that will be easier than this.

Hi there,

I am just curious if someone can help me with my thoughts. My Dad is 76 and is in late stage Parkinsons. He can still walk, talk and do the odd things like picking up food but requires 24/7 care and help with most day to day tasks.

I am his primary carer and look after him day and night at the moment. One of the things that wears me out a bit (I hope I don't sound horrible for saying that) is that he is in his "off period" he absolutely insist on immediately going for a walk around the house or going to the toilet and gets visibly distraught and keeps mentioning it constantly until we take him. 90% of the time this is not an issue but sometimes it can be really frequent like every 10 minutes which can get really exhausting as I am not only having to constantly get him up and down but am also getting up and down to do other things so sometimes I don't have half an hour to sit down in a day.

What I have come to notice is that the distress, pain and anxiety seem to vanish or at least subside as soon as we get him up for his walk or like when he is sitting on the toilet. I used to suffer from panic disorder myself when I was younger and I remember how I always wanted to leave wherever I was whenever I had them and would freak out until I could leave the room/place (proper fight or flight).

So I am starting to wonder if these episodes aren't so much that he is in a huge amount of pain but is more a bit if pain and discomfort but mostly just the pill withdrawal causing a huge wave of anxiety. Knowing which it is could really help me with working out how best to help him. I have spoke to his Specialist and Nurses about this but sadly their answer is always to just change pills but I wondered if it is anxiety whether I could use some of my experience to help him a bit.

Thanks in advance for an replies.

I'm not sure how this can be real. I have now been up for 2 days. Whenever I lay down to go to sleep, as soon as I doze off, she calls for help (bathroom, to stand up because of cramping feet, claiming she is falling out of bed, etc.). It does not matter when I go to bed.

We are not in the same bedroom. Our bedrooms are separated by a linen closet in the hall. And, as long as I am awake, she sleeps. But as soon as I lay down and doze off, she calls me for SOMETHING.

It's not just sleep. Tonight I peeked in her room to see if she was asleep. She was snoring. I went into the bathroom to use the bathroom, and she starts moaning and calling for help.

She does this when I try and take a shower as well.

How the fuck does she do it? How does she know when I doze off and when I go to the bathroom? (She can hear the shower when I shower.)

It isn't just a coincidence. It is EVERY SINGLE TIME! I started wondering if my life was just a simulation. Maybe I am the bot that they torture to see how much I can take.

I am an atheist, but she has me wondering if evil really does exist. There CANNOT be this many coincidences. It is not mathematically possible.

I feel attacked - and I can't fight back.

Is it just me? Does anyone else experience this with their Parkinson's parent?

My father is 66 years old and had been diagnosed with atypical parkinson‘s about two years ago after years of various neurological decline diagnoses.

My mother who is (or was, I don’t know anything anymore) his primary caretaker is away on vacation, visiting her sister abroad because she was so burnt out and has also been diagnosed with her own set of health issues. I encouraged her to go away for a while because I couldn’t bear seeing her so miserable anymore and she clearly needed some rest. Now I don’t know if she’s going to care for him again or even if she’ll be coming back. But that’s a whole other issue.

Now someone from the family is so gracefully helping care for him, and I’m there too. But I also have the family business to take care of + my own job. I haven’t been staying at my own flat for over a year now and been living with my parents to be around with them.

Last week dad was diagnosed with a UTI, and he now takes antibiotics alongside the tons of meds he already ingests every day. Note that he has no independence whatsoever. He wakes up many times a night to go to the loo and needs help to get out of bed + to sit on the toilet + to get back. Tonight he woke up suddenly extremely dizzy. He says it feels like low blood pressure. But i also found out that he bumped his head yesterday. He refuses to go to the ER (he’s by far the most stubborn person I know). Maybe I should insist more on that in the morning.

I don’t know what to think or do. It took him a while but he went to the loo and we put him back to sleep. Now it’s three thirty in the morning and I can‘t sleep, I know he will wake up again soon and it will be the same struggle again. And I’m on this subreddit for the first time reading all these posts. Realising that these UTIs are a sign that the end is close. But for a man who was so extremely fit and healthy only a few years ago, it’s hard to imagine such a sudden end. I can’t comprehend it, it’s hitting me like a bus.

And even if he doesn’t go away soon, I cannot see the point to all this suffering. It might be even worse an outcome.

I’m not sure what I’m expecting, posting something like this. This illness is the worst thing that can ever happen to a person and their family. I hate to see him like this. I hate to see my mother like this. I hate people’s pity and opinions. I hate being called strong. I don’t want to be strong. I’m not strong. I hate that I can’t do more (and that deep inside I don’t want to because it’s so unfair). That I can’t live my own life in my own house. That I’m missing time with the person I love and want to marry. That my father will never be a part of celebrating this love. And that my last memories of him will be these, because I can already barely remember him as a healthy man.

Hi everyone. I want to say upfront that this post may be a little upsetting, but afaik, multiple mandated reporters passed their eyes over the situation -- and it seems to be that once someone is at end of life, neglect is socially acceptable. I guess I want to hear from other people to make sure I'm not tripping.

So, my grandpa died a couple years ago -- he was in his late 80s. I was a caregiver during part of the time he was already in Stage 5 Parkinson's. My role was primarily to help lift him with a gait belt so he could toilet, when that was still possible, and to bring him stuff at times my grandma didn't want to. I also stayed because I was a very strong advocate for engaging hospice services, which no one else was on board with other than my partner even though my grandpa was begging to die. The other people present were my grandma, who was also in her late 80s and the primary caregiver for most of it, my partner (for a few weeks), and finally, a paid caregiver who inexplicably had a nursing license but -- because hospice or palliative was not involved -- no ability to actually really do anything.

Basically, we arrived at a situation where my grandpa was housebound and then bedbound. He would have fits where he yelled "help me!" over and over. When one of us would go to help him and ask what he needed, he would apologize or say he didn't know. I'm not sure if this was delirium or something else because no one capable of diagnostics had been present for it -- over a period of months, I actually only remember a single doctor's appointment, which was telehealth and really downplayed my grandpa's condition. Is that normal? It eventually escalated to the point that my grandma decided to close the door and leave him screaming "help me!" with no medication to calm him (other than the occasional quetiapine prescribed by the telehealth doctor). By the time hospice was involved, he needed to be transferred to a facility and he only survived 3 or 4 days. I know my grandma was also forcing him to eat, and I was fully left out of decision making.

My grandpa put off getting any professional help for a couple months, claiming that in her 80s, she could provide all the care he needed. She actually kicked me and my partner out because she couldn't stand "having people in her house" and ended up giving herself a widowmaker heart attack. By the time she got a paid caregiver (again, who did very little because he was fully bedbound by this point), he needed hospice's services for months and my grandma had not engaged because she "couldn't handle thinking about it" (whatever that even means, not really sure what the end result of thinking about it would be).

Now my grandma is dying from lung cancer and has shut me out, I think primarily because she knows I would confront her about what she did and didn't do with my grandpa. If I can get an audience with her, I think it is actually worth confronting her about this situation. I realized that EVERYONE in my family has constantly been telling her how brave and strong she was for handling the situation herself, but from my perspective, it was mishandled to the point I should've personally reported it to APS if I wasn't made to feel like I was insane for finding it neglectful.

Is it normal to delay hospice care until someone with stage 5 Parkinson's has 5 days left? Is it normal to leave them yelling for help and to not inquire about medications that may be sedating or calming beyond an antipsychotic prescribed by a doctor who didn't even see him in person? I feel like he probably should've had lorazepam way sooner, a professional caregiver should've been brought in way sooner if my family wasn't going to utilize my help, and like everyone is gladhanding my grandma who very seriously wronged a man she was married to for over 50 years.

It genuinely is my assessment that our culture gives a free pass to neglect if someone is at end of life and can't/won't complain. Certainly in those last weeks, my grandpa had no access to a phone and I don't think would have been able to use it if he did. I'm not even sure of his competence to ask for what he needed or for more help)to be put in a facility other than in very brief moments of lucidity that were treated like they were worth keeping him suffering 99% of the time to experience.

So... am I crazy? What do you make of this situation? Should I bring it up to my grandma? I think she should actually know that she didn't get away with it, not really. But I can be somewhat vindictive so I want to be sure this isn't incredibly heinous to do.

Thank you and sorry for the length!

I'm not sure I need advice, just an outlet. Parent's apathy is causing me to ask why we're doing any of this. They won't go outside for fresh air, won't look at animals or birds that come into the yard. Probably awake 6 hours a day. The one behavior that just kills me is how they close the blinds on the sunset. No interest in watching the sunset or moon. I guess they like their pet. but half the time they won't look up when it does something cute and I'm increasingly taking on more play time and feeding.

I feel like it's taking 3 adults full time and a small army of doctors to keep someone alive that just wants to play on their phone 4 hours a day. They want specialist appointments, then don't do any of the exercises or meds they suggest.

I'm just depressed and asking what this investment is even for at this point. I'm fighting 24/7 for someone who's completely checked out of life.

Since there's no one around me to understand what I'm going through, I'm back here to pour my heart out to the only place i feel safe venting at.

I've been my FWP's primary(or you could say more invested) caregiver for the past four and half years, the full time i was doing my bachelor's in computer science. i have shown everyone I'm really strong and did studies properly but truth is I didn't let anyone see how i have declined horribly in these years, mentally physically and cognitively. interrupted sleep every night for years has taken a toll on my academics but i couldn't ask anyone for help, especially i made sure to not disturb my mom since she works extremely hard to make ends meet. I've also worked hard but I've got dumber and when i realised i should give up and change major it was way too late and my mom would be extremely pissed and more stressed. but now after a long battle I'll be graduating with cgpa 3.3 out of 4 and that will get me a job nowhere let alone Masters. I'll obv still try and give my best to find something that is suitable for me. but I'm so scared to tell mom that im not even getting a 3.5 after all those all nighters. i cant tell her i keep getting more and more exhausted as time goes on but i couldnt even bother to ask her for help when she works so hard.

i don't know how i will continue life the moment i graduate. I don't know how i will face everyone who knew the brilliant me. I had big plans and ambitions, but by the 3rd year i was just burnt out and pushing through somehow.

hello, sorry if this post is not where i should be posting but im 24F and my dad got diagnosed with parkinsons last year. i moved to a different country a few years ago which is where my mom lives and im just trying to make sense of it all. my moms health is also not well, theyre both pretty stubborn and quick to anger. right now hes taking Levodopa-carbidopa 3 times a day and it seems to be working, some days good some days bad but its hard to get much information out of him. recently he had an emergency surgery while on a trip (unrelated to his condition) and got a small infection after the surgery (which i was there for and took him back to the hospital) i flew out as soon as possible and i took care of him until we could fly back to where he lives together and flew back to japan when he was mostly back to normal. i tracked when he needs to take all his meds (theres a lot), spoke to his health insurance company, did everything he needed basically but it doesnt feel like enough. im so scared for both of them, im not sure what the right thing to do is. they both have bad health, and live alone in different countries. healthcare in america sucks and its hard to even get him an appointment not to mention that my mom and his family dont get along very well and im in the middle of it everytime. it causes me immense stress and emotional exhaustion and i dont know what to do. if anyone has any advice, please help me. im really not ready for them to die, i feel like im so young with not much "real life adult" knowledge and i dont know what to do.

My father died of Parkinson’s last June. I have an uncle who has passed an aunt who has passed of it as well and now their daughter, my cousin has it early on she’s in her late 50s and is having balance issues she told me she fell three times in one day.

What advice can I pass on to her? She’s struggling with eating regularly and I think taking her medicine. Is there any good advice to give her?

I've just joined this group and already feel so supported reading through posts. Wish I'd done it sooner. Anyway, my dad (79, diagnosed 8-9 years ago) is still doing relatively well, but his balance and walking has declined notably this past year. He's finally agreed to using a rollator, which helps him a lot. But we've noticed that when he is in the heat or sun for an extended period of time, his symptoms get much worse (mainly, freezing of gait / he can't move his legs and therefore can't walk). We are approaching our annual family beach vacation, and the rental we have is not near a wheelchair accessible entrance to the beach. We're worried about getting him up and down the steps over the dunes, especially on the way back to the rental house after sitting in the sun. Any tips or recommendations would be so appreciated. I want him to still be able to enjoy his favorite place but I also want him to be safe and feel supported. (My family tends to get angry when things like this go wrong...not a good scene and I'm hoping to help us be proactive and have a plan!).

Helping your loved ones daily and being primary caregiver is a reason not to work and NOT carry on as business as usual, ( it is urgent at times to drop it all to caregive) but not living life fully as a blood relative son or daughter observer claiming it is all too much but just watching from the sidelines frozen?

And helping occassionally or just watching is not an excuse to stop growing and living your life ... esp if someone else mostly has it covered

Ditching the life you can have to "watch the decline" from the sidelines while others caregive a parent( medicaid funded LTC or spousal or other ) and using it as an excuse to not live fully is and can break the heart of a parent with Parkinsons . So if you are out there just watching a parent decline and someone or others have caregiving covered, don't stop living staying frozen on the sidelines using your parents parkinsons as an excuse not to live your life fully waiting until you can help more??? Live !!!

Not doing so is the worst gift you can give a parent or yourself with a progressive disease or chronic illness of any sort!

The best gift (if you are only a observer )is to live your life fully

and be happy cuz believe me it is what your parents would want ( particularly if all of this hard stuff is covered ... and for real)

sons or daughters spouses etc ( usually blood relatives) live fully

cease being that frozen observer

I see it everywhere

I see you

go out there and live

if someone has it all covered

You do not need to be a faux caregiver ... go and do your thing

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.

Sorry for length of this post, going to keep it as concise as possible.

My father was diagnosed in 2010, and since 2020 has had bad hallucinations and delusions. My mother is currently his primary caretaker. These hallucinations have led to violent actions and threats, which have led to him being baker acted twice in the past 4 years.

Not only do I fear for my mother's safety, but I want her to live her life, instead of being yelled at and treated like crap by the person she has dedicated her life to taking care of for the past 15 years.

The problem is that because he is so far gone with the hallucinations and delusions, he refuses to give power of attorney to my mother, which means she can't even make decisions that would make the situation better, such as taking an antipsychotic medication, since he refuses.

So the current situation is: she is working with a lawyer to secure guardianship, and through that lawyer has been recommended an "advocates for the aging" company to help her find a facility that will take him. The issue is that they claim he needs to go through a 3 month "stabalization period" at a facility that costs $8k a month. This does not include the money paid to the actual company for their consulting services.

We cannot afford this. We can't even afford a month of this. My mother's house is in disarray and badly needs repairs and renovation. Of course, after decades of not being able to hold down a job and leeching off my mother as she worked a full time job, cooked all the meals, and made all the house payments, for the first time in his life my father has a bit of money from inheritance.

But of course due to the disease he is not willing to do anything useful with the money, and has already spent some of it on literal scams he's fallen for online, instead of fixing our ceiling which has water damage from 20 years ago.

The lawyers are saying that if the guardianship case is successful, the costs of the case, as well as the costs of consulting with this company, as well as the ongoing facility costs would be paid for using his money, and then medicaid would take over.

But I just can't help but feel as if we are being taken advantage of. Has anyone gone through a situation like this? Is there a way to find a good facility that medicaid would eventually accept without working with the "advocates for the aging" consulting company?

Hi, I'm sorry if this comes across as forward, but I think about this often as my mom's qualify of life is really diminished and the longer she lives the more of a toll it takes on her and the family.

My mom is 81 in a care home, mostly wheelchair bound now with occasional very short walks, dementia has progressed to the point where she has word salad and cannot hold a conversation or understand what is going on for the last year. She can get very agitated and upset at times but also can still enjoy things like comedy on TV. She still recognizes her family but also mixes us up with the older generation that is no longer here.

My mom has had Parkinsons now for over 10 years but really the last 2 years she has declined quite a bit, especially so cognitively and physically int he last year. From my research, it sounds like she is at Stage 4. She is also now on hospice.

I know there is no rule book, but understanding from anyone who has been here in this moment would be helpful to just hear your perspectives. From research: it seems to indicate she could pass more quickly than seems possible right now, like in under 2 years. I also worry that this could drag on for much longer than that. Thanks

Hi everyone, I’m Bill.

I work in the Parkinson’s space supporting carers and families through Parkinson’s Lifestyle Management.

I’m trying to better understand what carers actually need, not what services think they need.

If you’re caring for someone with Parkinson’s:

What support do you wish you had more of?

What part of the day-to-day is the hardest?

Is there anything you feel like no one really prepares you for?

It could be emotional support, practical tools, dealing with family dynamics, navigating health systems, managing symptoms, or just coping with the load.

I’m actively building resources and I want them to be shaped by real experiences, not assumptions.

Appreciate anything you’re willing to share.

Thanks

I hope you are all doing as well as you can. My dad has recently lost his ability to walk/stand and is mostly confined to his bedroom. I’m looking for suggestions for things we can add to make the room more pleasant for him throughout his final days. I’m thinking of things like adding some art his grandkids have made or hanging some airplanes that he modelled before losing his hand mobility. I don’t want to overwhelm him, he is cognitively not in the dementia stage as far as we know, but I am sensitive to the fact that it may be soon/being ill like this is overwhelming.

Is there anything you added to your loved ones room or even their bed to help them feel comforted? Bonus if the individual with PD gave you feedback.

Thank you all, take care.

Hey there. I hope this is the right place for this post. I don't want to go into too many specifics but the long and short of it is that my mother has Parkinson's and lives across the country from me (US based). While she believes we are on good terms, I've been gray rocking her for years and have dealt with abuse from her in the past. We stay in contact but she is on a strict information diet about my life. There is no world in which I will allow her to move in with me, for both of our mental health and I've been very explicit about this since her diagnosis 5 years ago.

However the burden of care falls to me now. She has been living independently but recently I've had her friends reach out to me with concerns about her deteriorating health. She is still driving against my wishes (just found out that she's had cataracts this whole time too!) and is generally very reluctant to do anything she doesn't want to. I know she is not compliant with the exercises her doctor has given her, although I believe she is compliant with her prescriptions.

She is not the most reliable of narrators when it comes to what is going on, although that has been true my entire life and doesn't seem to be affected by the PD.

This is all to say that her friends and I suspect that she needs to be moved into assisted living in the very near future. I know that she will be against it, as it's something we've been discussing for the past few years. I'd love for her to stay in her own home, however it's multifloored and she is experiencing hallucinations. There seems to be a lot of cognitive decline happening as well, such as completely misunderstanding/misremembering conversations and struggling with logical reasoning.

I guess this partially a vent but what I would really appreciate it is how to handle the discussion of moving to assisted living? I'm traveling cross country to see her in a week and am just dreading this conversation. Other thing to note is that she's visited some retirement communities already and didn't hate some of them, however she has made no movement beyond that and my understanding is that many have multiyear waiting lists. How can I bring this discussion up with her and convince her to move while she has the choice without it turning in a brawl? Has anyone had experience doing in home care for the short term, and how did you get your parent who believes they are perfectly fine to be on board? How can I protect my mental health during all of this? How can I try to keep her happy? How can I convince her to stop driving???? Please help and thanks.