It most certainly! I admit took me by surprise how my husband reacted to becoming a caregiver. It's particularly hard because it happened rather suddenly. I made a point of emphasizing with his reactions. It's hard when he expresses his annoyance at having to get things for me. And the hardest thing is how he acts whenever I fall. I know it's from fear and frustration but I honestly try as hard as I can to avoid falling. We do have many good moments still. He's very thoughtful, especially when it comes to meal time - he makes great suppers. Eating is one of the few things that I do with total abandon, and we both enjoy it. Thank you for your kind words I will say a prayer for you and your wife as we navigate PD.

Communication is sure not automatic. But after 60 years, is sort of slips into habits. I just got hearing aids too because I got tired of not hearing parts of words in person and TV . Even with help, often speech is sometimes unclear. But it helped. Personally I think it's that autopilot problem that comes with pd. Speech, hearing, smelling, swallowing, balance, temperature regulation . It is what it is. Patience is a good thing to have . Even care givers need care. Growing older is not for the faint of heart. I wish my husband did not play cards weekly but it is his social life with peers, a break for both of us. I'm lucky enough I can be alone, but I'm careful about what I do. So far so good . That and he is a no non sense , patient man. Especially if he gets something to eat!!!!!!!!! Pat881

@A MyParkinsonsTeam Member Yes I am the caregiver and we both jumped into retirement with this disease. It is very hard on a relationship. The miscommunication is so frustrating. Thought it was my hearing so I got hearing aids which helps very little . He moves very slowly of course and I've learned the more you rush him the longer it takes.
He's getting a wheelchair soon and while that will be a challenge for me because it's heavy and cumbersome and we live in a tri-level home, I'm praying I can take him out for walks and hope it helps his depression. There are books and websites maybe he could look at. One is a gentleman "headlight". He speaks about caregiver frustration and offers ideas to help. We are not in this alone. 🩷

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A MyParki...

Hi, Susan. I’m so sorry you are going through these challenges. You are not alone. PD is not kind and compassionate. I am 8 years into my diagnosis and feel badly every day about how my disease has changed the course of life for my wife and family. At times, we deal with similar dynamics to what you shared. It’s a frustrating disease and sometimes makes us frustrated with each other.

We have 4 grown children. I remember when they were little, they would jump between my wife and me and try to not let us hug or kiss. It was a funny game we played. There was always a reason for one of the kids to crawl between us in bed. Having PD is like having another child (and often not a very well-behaved one:). It consumes all our time and energy and has a way of constantly jumping between us as a couple, keeping us busy navigating it and struggling for moments for each other.

I try really hard to be understanding of how hard it is for my wife to be my caregiver, but sometimes my behavior just doesn’t live up to my expectations of myself. I feel like it’s really hard managing the torrent of symptoms PD can present and at the same time trying to be empathetic, compassionate, patient, thoughtful, and restrained for my wife. I know I’m imperfect and fail at times and I try to apologize when I do.

I hope it’s helpful to know other patients share your experience. Wishing you all the best and hope things improve.

Oh ,Susan I really can sympathize with you. Your husband sounds a lot like mine. One of his favorite things to say when he is frustrated is "what is wrong with you?" I say "Parkinson’s disease! Seriously, have you met me?" I know that he is still in denial about my diagnosis, but it's been 5 years since my diagnosis. My husband suffers from depression but it is under control. He knows that our retirement is not going to be what he planned on. He worries about me and that comes out as barking orders to me. "Did you take your medicine? Or Why are you doing all of that? It's not necessary! Or it's no wonder you are tired, you took a lunch to a shut in from church! Watch that curb! Pick your feet up!" All said in an unkind tone of voice. I am trying to keep my life as normal as I can and he thinks that conserving my energy is the way to keep the Parkinson’s from progressing. I have found that communication is difficult but not impossible for us.I am always saying I don’t speak very loud so please listen. Recently he seems most frustrated with my diminished memory. It is frustrating for me too 😞 I find myself getting very angry with his lack of patience.I am going to try to make sure that he understands me and that I see his side of things. I wish I could be more helpful but it seems like we are all going through something or other. Best wishes to you ❤️