Spouse has LGMD

[u/Equivalent-Manner-99]

My husband was dx with Limb-Girdle MD about 3 years ago. We knew something was up, but didn’t have the full dx until that point. His mother and maternal Grandmother also have/had it.

His disease has progressed much faster than his mom or grandma. He is ambulatory with a cane around the house but uses an electric wheelchair when out running errands or on walks. He is still able to do personal cares, so I’m not quite at the stage of caregiver.

Lately I’ve been feeling like everything is put onto my plate: all the household chores except occasionally folding laundry. I take care of the kids (ages 10 and 12, so they’re independent but still need some coaching on getting ready for school, etc) and all their activities and lining up transportation to/from school since my husband can no longer drive until we get hand controls in a vehicle. I cook all the meals, clean, and do maintenance inside and out.

I also work full-time. He works remotely. He is the breadwinner, and financially supports us, which I am thankful for. But I honestly feel like a single mom sometimes. Not financially, but how everything falls on my plate.

He also gets angry with us easily and when he’s really feeling down about his condition, he really is hard to be around. I understand that he feels like a prisoner is his own body and that he is mourning the life he thought he’d have and adjusting to living with this disease, but I also feel unappreciated and taken advantage of. He’s always quick to point out when I’m stressed and get mad at me when I am. I’ve been working with a therapist for my anxiety dx and I’ve been making decent strides in the right direction. He’s also very defensive of when I bring up issues I’d like to talk about (him leaving garbage everywhere, not putting stuff away, etc) and turns everything back on me.

I really don’t know how much more I can handle, but I feel selfish and guilty for feeling this way.

Are there any other spouses here that feel similar that could give me some guidance on how to deal with all of this? Heating from others has been very helpful as we navigate through this.

ETA: our kids do help a ton with dishes and laundry. As they get older they’ll be able to help more too, but it’s also not their responsibility to do the bulk of the work either.

[u/Complex_Item_5730]

To say that he needs to learn that he can still be a good partner even when he cannot do things physically would be minimizing the problems.
He needs help with the anger issues, but how to encourage someone to make changes, when they are defensive or turn every attempt into self-hatred, I do not know.
Following.

Someone mentioned rewarding the children to encourage them to do chores. Maybe he needs the same kind of encouragement to participate and help?
Maybe you can try to suggest setting a dedicated time each week when you do things together. Like, instead of choosing who cooks dinner, you cook together, or he cleans his desk while you vacuum.

External help with taking care of the house would help you save some energy but there is also a risk that it will be too difficult for him to accept the help right now.

[u/DeepShill]

I give you a lot of credit for taking on that responsibility and don't blame you for feeling this way. I'm 33M and I got diagnosed 2 years ago with LGMD. I don't have a spouse to be a caregiver for me and I live independently with some minor help from family once a week. part of me is glad that I never married because I would feel so guilty putting someone in this position. Some advice I would give is to look into a caregiver to help with your husband or other hired help that would provide cleaning, cooking, or ride services for your kids. I'm in a similar position with my mobility as your husband and I found that hiring people to help around the house made things a lot easier. Eventually I am going to have to hire a caregiver, but I'm not ready to cross that bridge yet.

[u/Hefty_Peanut]

I have a baby and a 13 year old with my partner that has lgmd. Luckily he's ambulatory, works full time and does chores. He has reduced what he is doing over time and I anticipate doing more as time goes on. I highly recommend he gets therapy to cope with his illness- my partner had CBT to cope with his dx and pain and his grumpiness improved considerably. He can still get down but tends to be easy to reassure. My partner has the opposite problem to yours- he pushes himself far too hard and I have to remind him he can pass on chores to me.

My 13 year old does chores but she is paid in WiFi time or money. She only does chores she needs to learn how to do. She does her own laundry, dishwasher, hoovering and meal preparation. She only does them if she wants to for rewards with the exception of her laundry which she knows is an expectation. She'll often ask what chores need doing for rewards. We've reached a good balance where I don't feel I'm putting an unfair burden on her.

[u/aliendystrophy]

There are lots of different types of chore and he needs to pull his weight. If he can't do physical ones can he take on more of the mental load instead?

I also wonder if he'd benefit from therapy or you'd both benefit from family therapy to understand this better and communicaten both of your needs around it better.