r/ParkinsonsCaregivers

I know this is just going to be an echo of what many others before me have experienced, but I just need to whine into the void I suppose. Or the void of similar people. It's going to be all over the place though.

My dad was diagnosed early, when I was around 25 (I'm 41 now). My sister burst into tears when he was diagnosed, whereas I had a more "That's horrible but its okay! It's not a death sentence cancer or something". I think my knowledge was so tangential- celebrities stories kind of thing - that I didn't consider what a long, horrible degradation this would be.

In the past seven-ish years its gotten so hard for him, my mum caring for him and for my own ASD brain. It's difficult for me to see him getting worse and worse - I've always had a sensitivity around people becoming very ill and/or near death, so it being my most beloved person isn't really making it easier.

It makes me so distressed to see him just a shell of who he was. To think that the him I adore is trapped inside this Parkinsons affected brain and body and I can't reach him. One time when I was with him and his hallucinations were awful, not only couldn't I get him to rest but he looked at me like he didn't know me and that really... sticks with me I guess.

I have cfs/me so I don't have the ability to go and help as much as I would like to, but today I am going to sit with him while mum has some time out the house, and I truly hate that I'm so upset and worked up before going. It doesn't help that I don't get asked in much advance- mum literally asks the day before, even though I say I need more prep time. I get it, she's distracted. It's hard for us both.

This was a man I used to sit and talk to about everything, who'd help me work out my feelings and how to navigate the world. Now I can't understand him, listen to the same nonsense story over and over and it kills me inside.

It's like the only person who could help me navigate this is the one suffering.

And of course, I hate this long deterioration. I have friends who have lost parents suddenly and I know that neither option is preferable but God. I hate watching the most wonderful man in the world suffering and struggling and becoming less and less of himself. I hate having to try and explain his computer to him every visit, over and over, only getting upset and frustrated myself. I hate that my memories of him are going to be this deterioration and my guilt, not the better things.

I'm trying to get all my crying out now so I can be better for this visit. Its hard not to expect the worst.

My dad is still up walking with a walker so I am shocked when the hospital recommended a hospice evaluation for him. I am confused because they didn’t talk to me as I was at work. He is discharged back to his assisted living facility now, but I saw in his hospital notes that they recommended hospice. I just didn’t think he was that far gone yet.

I’m struggling psychologically with my grandmother’s condition and caregiving situation, and I feel very alone in this.

My grandmother is 85 and has advanced Parkinson’s disease. She can barely walk or speak anymore, and over the last years her personality has changed a lot. She has become very negative, emotionally harsh, and difficult to care for. We’ve had women caring for her at home for around 2 years, but they keep giving up because the situation is extremely demanding.

She lives next door to us, and my mom basically revolves her whole life around my grandma now. She goes there multiple times a day, organizes food, medicine, caregivers, emergencies, and constantly deals with stress and emotional pressure. Watching my mom slowly burn out is devastating.

The problem is that nursing homes in my country have a very bad reputation, and I’m genuinely terrified of neglect or abuse. So I feel trapped between: knowing the current situation is exhausting and feeling terrified and guilty about the idea of institutional care.

At the same time this whole situation has completely consumed me too.

During TTC and after going through a miscarriage, I basically emotionally abandoned myself and my relationship because I felt like my grandma’s crisis was “more important” than my own pain or life. I became depressed, joyless, emotionally numb, and my libido completely disappeared. I also had a flare of Hashimoto’s thyroiditis and had to start medication.

I’ve realized I have a huge problem with trying to fix everything and carrying emotional responsibility for everyone around me. But I genuinely don’t know how to stop without feeling selfish or guilty.

Has anyone here gone through something similar with elderly parents/grandparents, Parkinson’s, caregiver burnout, or the guilt around nursing homes? Especially in countries where elder care systems are not very trustworthy?

How did you emotionally survive this without losing yourself completely?

My dad was diagnosed with PD around 55yo. That was 12 years ago. The year he retired. And he always had it in his heart to get a Mini Cooper. He used to love driving. Could drive anywhere, any amount of hours. For the past years, my mom has become the main driver and caregiver. Still I help with certain things.

Anyway, he was talking about selling his Mini Cooper for the past weeks/months but never got around to actually going through with it. A few weeks ago we grieved the surgery we hoped he could have. And two days ago he told me he wanted to sell the car. It might seem silly but the fact that I took care of taking the pictures, setting up the page to sell it online really affected me. Because it’s saying goodbye to a part of his life that was supposed to be good. And I feel so angry that he is getting rid of it. I feel so much grieving every day and he might be ready to let it go but I’m not there yet.
My mom is also telling me to be supportive and not to show my emotions but I can’t help but feel sad. And it makes me feel guilty that I am feeling the way I do.

Dad with PD with cognitive issues and I are very close. Little by little I’m learning to notice when he’s going to dig in or we can’t logic our way out of an issue. I’m not immune sometimes but I try not to take the bait.

While staying with him recently I learned he’d been taking too high a dose of a daily insulin, which explained some things Since then I’ve been playfully quizzing him on the right dose when we talk. When he answered wrong today I suggested he check his med list, which he promised to do.

And he did! Called me back later to say so and seemed grateful to have that figured out…

until he accused me of micromanaging his health “because I enjoy being right.”

I can handle you being mad at me more than I can handle you falling into a coma. Nighty night!

I feel like this is very petty, but are any of you dealing with your PD patient making unending noise? I know I have misophonia, so maybe I'm just extra sensitive. My mom makes noise all the time. She's always hungry and she often eats crunchy little snacks like a raccoon. It's like she's lost her manners. She eats loudly, she makes moaning noises randomly, she literally can't sit still, so her walker wheels are always rolling, and she talks constantly. Am I alone in experiencing this??

Hi everyone. I'm here to vent and see if anyone else is feeling so overwhelmed by elderly parents especially one with Parkinson's. I have a Mother with Parkinson's (86). I think she is stage 4 or 5. She won't ask the Dr. My step father (83) has pulmonary hypertension and is on oxygen 24/7. He can't walk 20 steps without being out of breath. He coughs and coughs I think from fluid in his lungs. I moved in with them around 2 months ago. I had some very stressful things happen in my life and I was in another country alone so they said to move in with them to relieve the stress. Well what a shock I got when I actually lived with them instead of visiting. When I was visiting last year they were more functional, ie. they could go out and get groceries but now they are totally housebound. The Parkinson's has seemed to progress a lot. If anyone on here can give me some insight as a caregiver for someone with Parkinson's please let me know if you see some commonalities. She cries a lot out of no where. She clings to me for every decision. She can't start a task without pulling me into help her make decisions to finish the task. Sometimes I feel like she just gave up all together. The cleaning lady was cancelled so I said Ok then look up companies online. She just says it's too hard for her. Her voice is getting so quiet and sometimes she slurs quite a lot. Her back is hunched and she is only about 103 pounds. She refuses speech therapy and physical therapy. It's such an effort to just get her to take a short walk with her walker, which I have to go with her as she is too scared to go by herself. My step father is bed and chair bound and won't even try to walk or help or make household decisions. He can have big outbursts and his hearing is going so and he blasts the TV news all day. He gets mad easily. He bellows to my mother to get breakfast, lunch, tea. She goes to speak to him in his chair in his office then walks to the kitchen and asks me what he said he wants. WTF I wasn't there. She sighs, skrinches her face and says ugh I don't know what he wants. Her face shows such anguish is so hard to see. Dinner must be on the table at 6pm or she just hovers around me. She won't read a book, do a puzzle, or anything that engages her mind. She just stares out the window with a blank face and I don't understand how she can do that for hours on end. When she wants to talk there is no back and forth. She ask me a question then does not respond with any feedback. Everything overwhelms her. Her anxiety/emotional state dominates the household rhythm. I've now got dinners organized because everyday she was coming to me with anguish and dread on her face about what I am going to cook for dinner and how I can get it on the table for exactly 6pm. I just don't understand how she can be so emotional over dinner. It's got to the point now that when 4:30pm rolls around and I have to start thinking about dinner I get panicked. When we tell my step father in his office chair that dinner will be 5 minutes he doesn't show up for at least 20 minutes so my mother and I eat dinner and he rolls up 15 minutes later gasping for air leaning over a chair to catch his breath. It's really scary. I am an empath so it affects me greatly. I'm exhausted trying to calm my mother's emotions. My step father has flat out said he will not deal with her emotions anymore. She is distressed so often I just don't know what to do other than to say please calm down, this isn't the end of the world, you're going to be ok, please breath - in and out. I try to set boundaries around her emotions dumping on me but she just comes back and does it again and again. She is negative about everything in life. I'm completely exhausted. Why can't she control her emotions or at least understand that the constant distress, worries, dependence, frustration and strain is utterly draining. I'm constantly trying to sooth her which leaves me completely depleted. Please, anyone living and caring for someone with Parkinson's help me to figure out ways to deal with this. I love my mother and it's breaking my heart into pieces to see her like this every day. The dread and anxiety of living with two very ill people has completely taken it's toll on me. I don't want to go out, take a class, meet people anymore because I'm so unbelievably anxious from this constant stress. I take really long walks outside to get air and be away from them and as I approach the door to come into the house, I'm so sad, depressed and anxious to open the door and step back into this depressing, anxiety ridden, demanding place and put on a fake face. I can't get mad at her and I can't break down myself because she looks to me to just keep her going everyday. I'm at loss and dread everyday now.

my mother has had Parkinsons for 10+ years and is in the later stages. she can still use a walker to walk a little but we have 24 hour care for all activities of daily life (fortunately she can afford this), difficulty swallowing and sleeping, constipation, etc.

her mind has been sharp through all of this but she is now showing some signs of confusion. as one of her caregivers said “90% of the time it’s ok but the other 10% is getting scary”. she sometimes imagines she’s in another city or thinks someone is a different person, but when I correct her she comes back fast still and seems to be aware of things. I can’t tell how much of this is just tiredness/stress for an old person and how much could be the beginnings of dementia.

what are peoples experiences with potential onset of mental issues when someone has been sharp mentally for a long time even through all the physical challenges? I don’t want to discount her capacities

It's Mother's Day in the US-but wishing all moms a blessed day. And special hugs/love for those whose mother is gone but not forgotten.💮

If anyone wants to, reply with a memory you wish to share.

I recently lost my Dad to parkinson's, he was diagnosed in 2018. Eventually he was worn down by recurrent aspiration pneumonia.

In the beginning of his disease I started to compile some research on the disease, I have a science background but am not a doctor. Please consult with your physican/neurologist.

I wanted to structure this more like a literature review but lost steam at some point, but wanted to get it out there in case it can help anyone.

I believe that amongst Parkinson’s patients, as with any disease, there are people who have found tricks and quiet breakthroughs that have made a huge impact. If you or someone you know has been managing Parkinson’s long term without significant disease progression, I want to learn about your methods and your secret tips, tricks, and treatments. If it’s something you don’t feel comfortable posting publicly please send me a message. I will then conduct research on anything shared here and determine what is a good fit. My mother has Parkinson’s and I want to stop her condition from progressing. 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

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.

I’ve been working on a small macOS accessibility tool focused on reducing typing mistakes caused by hand tremors in people with Parkinson’s.

The idea came from seeing how frustrating repeated keystrokes and unintended inputs can become during everyday typing.

The app is still in a very early beta stage, and I’d really appreciate feedback from people who experience Parkinson’s-related typing difficulties on Mac.

I’m not making any medical claims — just trying to explore whether software can make typing feel a little more manageable.

If anyone would be interested in testing it or sharing their experience, feel free to comment or DM me.

sometimes my dad will stay up too late because of some unwanted disruptions in meds timing, then I'll have to stay up too, even if I've been awake with him since morning. i have lots of these 19hour days, on my feet and alert all day. Then at night when he'll finally calm down and I try to put him to bed from a washroom visit or sth, he'll point to the outside of the room with the most horrified expression and even though i know it's probably nothing but still get scared cuz obv it could be the other case too 😅 and then when I'm assured there's nothing and carry on with my remaining tasks alone, I'll often see some shadows (sometimes black, sometimes white, sometimes like insects) and I'll see those while my eyes are dry, sore and burning from the exhaustion. added with heart beating very loud and being little dizzy

anyone else in experience this?

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.