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My 48-year marriage has taken a massive hit since mid-May, when a severe decline in my legs left me with no balance. I now fall frequently, use a wheelchair outside, and dread stairs. The first six weeks felt like putting out fires every five minutes—an exhausting, non-stop cycle of adapting that left me gasping for air.
Because my physical therapist insists on 24/7 supervision, I’ve had to face the reality of losing my physical independence. This has been equally traumatic for my husband. He… read more
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Members responded with deep empathy to the post about how caregiving affects marriage, especially after a sudden decline from Parkinson's... Read more
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. 🩷
It is such a beautiful song. I remember it from long ago.
Susan, that sounds really tough for both of you. The only thing I can think of is to work to find ways that allow him some time to himself. Do you have family or friends that would come visit for a couple of hours so that he can get out? Do you have the resources to hire someone to come in and keep you company while he does his thing? I was talking to someone at RSB who drops her husband off at an Elder Day Center twice a week. It costs a lot, but it gives her peace of mind while she runs errands. He doesn't much like it, but he goes because he knows she needs time to herself. Are there any Senior Centers near you? They are free, I think.
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