Children of parents with Parkinson’s disease

[rola]

My aunt has Parkinson’s disease, and I’m the only one who can take care of her. I really love my aunt, so I do my best so she can feel protected. It’s a pity, but she has no children, so as I’ve said, I’m the only one.

[rola]

Btw, I used to help guys from https://fosterplus.org. They take care of children with mental diseases. I actually learned a bit there, so I can give my aunt better treatment. She’s a great open-hearted person, actually, but destiny has its own plans. So that’s my little story. It’s a bit silent here, so I’d like to read some other stories. TIA

[ally]

Rola, I’m sorry for the late reply but I wanted to say thank you for sharing your story and the Foster Plus resource. I hope others find it helpful, too. Your aunt is blessed to have your love and care!

[mary-beth-skylis]

I am! I think that Parkinson’s has softened me to my dad’s reality. I used to think he was tough-as-nails, and a constant force to be reckoned with. I still think he’s pretty amazing, but for different reasons. He’s determined, and willing to shift his lifestyle in really challenging ways to fight Parkinson’s. And I’m proud of that.

I’m not really a caregiver. When I’m home, I’ll take him to appointments and whatnot. But I don’t live in the same state as him.

[denise]

My father and then my husband both had/have Parkinson’s Disease. I am not worried about getting this disease genetically because both of their “maternal grandmother’s” had it. It followed that pathway in both of the men in my life. I have had restless leg syndrome, but believe that’s just a menopause issue.  And my mother was mostly my father’s caregiver, until we finally convinced her she needed help one year before his passing. How has all this affected me? I formed the “Positively Parkinson’s Support Group” in our area with the premise of sharing one positive strategy or observation you’ve made in the past month that is helping in some way to alleviate a symptom (or many). Its a group which shares both medical and non-medical opportunities to improve the quality of life among our members!

[beth-ann-chambers]

Hi Ally,
I am the sole caregiver of my mother who has Parkinson’s diagnosed December 2014. Then I noticed I was having tremors back before the pandemic as I went to seek assistance for my issues I was diagnosed with Parkinson’s as well and November 2020 it has been a blessing to care for my mom but it also the most difficult thing I feel very isolated. I think it became more difficult for me personally as I was diagnosed with PD. I try not to dwell on it but being a full-time caregiver is not easy as many of you know and I am desperate for some sort of support or how to find some help so I can have some sort of break. Thank you, Beth Ann

[ally]

Hi Beth Ann, thank you for responding to this post and sharing your story. You’re certainly in a unique position as the child and caregiver for a parent who shares your diagnosis. Where are your located in the world? Have you talked to your doctor or your mother’s doctor about accessing professional caregiving and/or respite services to help you manage some of your caregiving responsibilities? Are you in a position to use things like grocery delivery, cleaning services, and other things like that to help ease the burden of domestic tasks? I can only imagine how challenging things must be for you at times and I hope that others in this forum will also chime in and offer some supportive solutions.

[chamor336]

My father is newly diagnosed with Parkinson’s (August 2022) and is in mid-stage already.  Looking back at his symptoms, he probably has been living with it for the past few years.  After he caught COVID-19 in August and ended up in the hospital, his condition became much worse, and he has been hospitalized twice for falls and spent several weeks in a rehabilitation center.  My mother has been suddenly thrown into a caregiver’s role and my parents are slowly adjusting to their new life.  Unfortunately, they currently live in another State so I feel useless.  My husband still works so we are unable to move closer to them, but my parents have decided to move closer to me but are unable to move until Spring.  I have found a lot of resources and have been sharing it with my parents so we can all learn what this disease is and how to effectively cope with it.  It has been so sad to see my strong father have such difficulty with simple tasks along with all of the new non-motor symptoms (hallucinations, paranoia, etc.) that we are unfamiliar with.  This has shown me how fragile life really is.

[Jon Busch]

Frustrating. I have PD (diagnosed in 2009). My father had it. His father had PD and one brother was thought to have had it – and yet I don’t have any of the genetic markers of PD. I have two younger brothers who have been symptom free so far (they’re late 60s early 70s). My symptoms mirror my dad’s. I’m still independent at 81 but my strength and balance are getting worse and bowel movements more unpredictable. Fortunately I have roommates who help out and do things I find difficult now. I have a 30 minute gym workout routine every other day and joke to others that it’s probably why I’m still alive.