a woman surrounded by her loving family, asking for help with myasthenia gravis

The Challenges of Living Away from Home

I have myasthenia gravis (MG), and even though I’m partially confined to a wheelchair/power chair, I can still walk with the aid of a walker or rollator. I can also stand to reach things, but only for a short time. However, I recently had a pacemaker inserted and my husband fractured his leg.

What does this mean for us? We are both experiencing limited mobility and need help. For the last 7 months, my husband and I were staying with our youngest son and his family while we recovered.

Adjusting to a new living situation

When I was discharged from the hospital, we had already moved into our youngest son’s home. Once I started feeling better and gained more energy, I started helping around the house. Due to my son and daughter-in-law's work schedule, I started doing most of the cooking. In the beginning, I was concerned about over-stepping so I would check with them about dinner plans and groceries. However, I learned my boundaries and became more comfortable with doing the meal planning myself. I’d usually try to have dinner prepared by the time they arrived home.

Grocery shopping

At first, I’d make a food list and our daughter-in-law would shop for us. Many times, we didn’t shop for the same brands and sometimes she had no clue what I wanted! Later on, we realized the groceries could be delivered out in the country where we were, so we started ordering what we needed from the local grocery stores and Amazon.

That made it so much easier, and I didn’t feel so much like a burden having to ask for help in shopping. We split the groceries and other supplies best we could and paid our son for the additional utilities. They didn’t want to take the money, but it made us feel better hopefully reducing their burden having us there.

House cleaning

I also helped with the housecleaning. However, the most difficult thing for me is cleaning the bathroom. My chair won’t fit through the small doorway, so I have to stand to clean. Most of it isn’t bad, but the stress from bending and stretching causes severe muscle cramps in my legs. I pay for the pleasure of that by having leg cramps during the night and pain for several days after.

Living in a space that is not wheelchair accessible

My home is set up so I can reach most of the things I need from my chair. My son's home isn’t. Their dishes are in a cabinet where the lowest shelf is barely within my reach from my chair. When food is put in the refrigerator, I utilize the lower shelves. Our son? Well, they use the top 2 shelves. There were times that food would go to waste because I couldn’t see what was in the fridge.

Hesitant to ask for help

Once or twice a month, our second-born son would come over for a barbecue. It was wonderful getting together! We saw our children and some of our grandchildren and great grandchildren more often than we would at home. That was the best part of being away from home!

It was at one of these occasions that I got a good chewing out by him. I wanted something in the refrigerator that was out of my reach. Not wanting to interrupt his meal, I decided I didn’t need it. He wanted to know what I needed, but I was reluctant to tell him because I knew he'd get up and grab it for me. He was upset with me for not asking him to help me. I’ve always had issues asking for help, but I guess because of age and health issues, I needed to get over that.

We still felt like a burden

Our son’s older daughter doesn’t live with them full-time, so she willingly and graciously gave up her bed for me. My husband often likes sleeping in a recliner because of his back and now the fractured leg, so he parked himself on the sofa recliner.

They all gave up a portion of their lives for us by allowing us to stay with them. All our children helped get us to doctor appointments, one took us to Lowe's just so we could get out of the house for a while. Our daughter monitored the doctor appointments, medical bills, and medical information.

Though we appreciate their sacrifices, we still felt like we were a burden (through no fault of theirs). It’s just that, even though I’m in a power chair, I strive to remain as independent as I can be.

Though temporary, living with our son and family was challenging at best. It was challenging for a lot of reasons, but never because we didn’t get along. They were all wonderful, but it’s great to be home!

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