New household help eases the burden on my spouse and caregiver

If you were given the gift of nine extra hours a week, what would you do?

This was the situation my husband and caregiver, Justin, and I found ourselves in last week.

In February, we met with the owner of an organization that we were referred to by the Veterans Affairs Caregiver Support Program for additional home health services. One of the crazy things about the program is that they don’t consider household chores to be a part of my hubby’s caregiving duties.

So, for the last decade, he has been responsible for all the cooking and cleaning. I can help only on a limited basis due to my myasthenia gravis and other health conditions. He does that on top of trying to open a small-group personal training gym; working his normal part-time job as a writer for another fitness professional; taking care of the dogs; grocery shopping; keeping up with home maintenance; cutting the firewood for our wood boiler … you get the idea.

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It took a few weeks for the organization to find a helper in our neck of the woods, but find her they did. Her first day was last week. She will be helping us for nine hours a week with tasks like cleaning and meal preparation, and may even be able to just sit with me if I’m having a bad health day.

Nine hours a week is about 36 hours a month. Our current schedule has her working four and a half hours twice a week. With everything she accomplished on her first day, Justin was able to get a full day’s worth of work done.

Sharing the weight of MG

As the person requiring help from both my husband and now our new helper-friend, it’s hard not to feel like a burden after seeing that relief. But what is a burden?

According to the Cambridge Dictionary, a burden is a “heavy load.” When looking at it from such a simplistic angle, this disease is a burden. It is a heavy load to carry.

It is a burden on me as the patient. As a wife. As a mother. As a business owner.

So why can’t it also be true that it’s a burden for those who care for us — our medical providers, our caregivers, our friends and family?

This disease weighs us down in so many ways that burden really is the right word. One of the ways I’m able to maintain a positive outlook on life is that I accept things for what they are at face value.

Some of these things — like being a burden — are more difficult and take more time to acknowledge and accept. I’ve been acknowledging that I am a burden to my family for years. But accepting it is still difficult, especially with such a visual representation and reminder of how heavy of an unspoken burden I’ve been.

Don’t get me wrong, my husband has never told me I’m a burden. But that hasn’t stopped me from feeling and acknowledging the weight that myasthenia gravis puts on everything we do.

Seeing how a simple nine extra hours a week allows him to refocus his energy on tasks other than dishes, cooking, and cleaning has helped me move from acknowledgment to acceptance.

Accepting this help is like using mobility aids: It allows us both to prioritize where we spend our energy. For Justin, he has started running again and is less stressed and overwhelmed.

So this is me, accepting that I’m a burden and that’s OK. I am thankful for the nine hours a week my hubby has been gifted and can’t wait to see what else he’s able to accomplish with this time.

Together, we are working on accepting the help that’s available so we can focus our energy on the things that help us both live our best lives.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.