Wife Recently Diagnosed at 44

Hi folks--My 44 year old wife was diagnosed with Parkinson's disease by her neurologist in October 2024. Preceding her diagnosis were at least six months of me begging her to go to the doctor. Her balance had become extremely poor and she would often fall, her right shoulder was frozen requiring rotator cuff surgery, her reaction time was noticeably slower, and her speech was very quiet and slowed down, with difficulty pronouncing some longer words. People would pull me aside and ask me what was going on and if she was drunk (she does not drink) and I had no answers other than it's not alcohol, because for many months I could not force her to be an advocate for her own health.

The diagnosis, while shocking to us, gave me an answer to what we had been dealing with for months. I was glad that we could start to mitigate the symptoms. She's been on sinemet since and it provides some help, but not as much as I hoped. She has continued to work even though I've told her that we can afford for her to leave her job, but she is not able to drive so I have to take her to work every morning. We also have 3 very active kids and a busy household. Basically all daily tasks are now falling to me and I work a very demanding job that is more often than not 60 hours a week or more.

My wife refused to tell anyone, including our kids for 2 months and instead we suffered in silence. One evening, my wife fell in front of our oldest who works in a dementia ward and our oldest said "Geez, it's just like being at work" as a joke. They both had a good laugh about that (the oldest of course had no idea about her mom's diagnosis) and I had to leave the room because I was so angry. I finally told my wife that if she would not tell them, I would, and so I did tell them. The rest of the family other than my dad and her mom, have no idea, even 4 months later (but continue to ask questions because they care about her).

I feel so guilty saying this, but every day has been an immense struggle for me. She wants to continue to be independent (carrying a massive backpack, coffee and water bottle down our garage steps with no railing, for example), and I try to respect that, but it can be very dangerous. She fights me about everything - including putting a railing on the steps, redoing the bathroom to make it safer, asking questions of her neurologist, etc. The last visit we had with the neurologist, the doctor asked her how her balance was and she said it was good. I immediately jumped in and said "You would have fallen two times just coming up to this building if I wasn't right next to you." The doctor recommends reasonable things like PT and she refuses (because she is doing PT for her shoulder). He recommends that she use a stationary bike for exercise--we have one and I brought it up to our room and she refuses to use it.

Every time I have to run an errand and she wants to come along I have to bottle up my feelings because it will take us at least 10 minutes just to get into the car and every trip is difficult because I have to make sure she isn't going to fall and be embarrassed, or worse, hurt.

I imagine the vacations that I wanted us to take as a family and realize they won't be possible. We take a trip to the beach each year and I'm extremely nervous about that--the logistics of getting her down to the beach and then back to the house.

I tried to get her to try counseling and she refuses. She has emotional breakdowns nearly every day. I've been extremely fortunate that I've been able to take off work for several weeks while we try to adjust, but I will have to go back. Right now I'm down with the flu and still trying to hold everything together. She hates to ask for help and so, while we have family who are willing, I get berated when I do ask for help. As an example, one evening I had to go to my nephew's concert which was a 2.5 hour drive one way (my father, who is in his 70s, promised my nephew he would go and I did not want him driving that distance alone at night). I asked my mother-in-law to come and stay with my wife because she had fallen in her closet the night before and I'm certain she would not have been able to get herself up if I hadn't been right there. My wife derisively told me she does not need a babysitter and was angry with me for a few days. I would do the same thing again so that I didn't have to worry about my 8-year-old having to try to help her mom after she had fallen.

I never imagined that I would need to be a caretaker to my spouse in my mid-40s. I feel like I am now somehow married to someone who is 30 years older than me when we are actually more like 30 days apart in age. Again, I feel horrible for having these thoughts because how can I feel bad for myself when I see what she is going through?

On the bright side I feel like I have found wells of patience that I never suspected I had. Patience for every day conversations with her, patience as she takes an excruciatingly long time to do anything, patience when I need her to make a call for something, patience as she gets furious with me when she doesn't understand something I'm talking about, patience when she is trying to accomplish something on her phone or the computer, etc. No matter what, I do not show frustration due to her disease and I try to find the balance between respecting her independence and keeping her from harm.

Don't get me wrong, my wife is incredibly difficult, but I love her and I'm with her through thick and thin. At the same time, I'm exhausted. She gets up multiple times in the night to go to the bathroom and, thankfully, she hasn't fallen yet, but I wake up every single time nervous that she will fall but trying to give her the independence that she wants. On top of that, I'm battling the flu and our heat stopped working 2 times during the coldest week of the year last week.

I know PD is a progressive disease so I will not ask for hope that things get easier. But I'm looking for reassurance that even though the disease progresses, we will get better at managing it than we have been in the first four months.

If you're still reading this, thanks for listening. I've never posted anything to Reddit but have always found it to be an incredible resource.