Grieving for a Disabled Loved One: What’s Different about It?

Last October my husband’s aorta split like a garden hose. If something wasn’t done he would bleed to death. He had three emergency operations and the third left him with paralyzed legs. Thanks to physical therapy, he can stand for a minute and a half, and his right leg works. But his legs can’t support him and my husband will never walk again.

His life is different, my life is different, and I’m grieving.

I’m not grieving for me, I’m grieving for him. My husband’s life has been turned upside down. He spent eight months in the hospital and faces new health challenges. Though we are facing these challenges together, I feel helpless, more helpless than I have ever felt in my life. The sources of my grief are varied.

1. The prospect of additional surgery. His wound isn’t healing as it should and he may have an infected rib. If this is the case, more invasive surgery is the only solution. I’m not sure my husband can withstand more surgery and anesthesia. It can take months for anesthesia to leave the body and my husband has some short-term memory problems due to anesthesia. His personality and knowledge are intact, and need to stay that way.

1. Abrupt lifestyle change. The active man I married – fisherman, traveler, walker – is gone Several times he has talked about fishing and how much he enjoyed it. “I won’t be doing that anymore,” he says, a sentence that breaks my heart. Across from my computer work station there is a picture of my husband in his waders, a protective cap on his head, holding the trout he just caught. When I look at the photo I want to sob.

1. Financial worries. The problem with the kind of grief I’m feeling is that other life problems make it worse. Doctors and physical therapists prescribed an electric wheelchair for my husband and we’re renting one now. Medicare turned down his wheelchair application (this kind of wheelchair costs $33,000 or more) and we have to re-apply. Six months on the market and our old house hasn’t sold. Money worries wake me up at night.

1. Isolation of caregiving. In my former life, I was president of organizations, served on boards, volunteered at the library, spoke to community groups, and gave workshops. All of these activities have stopped because I’m needed at home. I miss them, and I miss the person who used to do them. Thankfully, I can still write and this has been my solace. Still, there are days when I feel like the last person on the planet.

1. Personal health problems. I am sleep-deprived and try to compensate by taking afternoon naps. Sometimes a nap helps, and other times it doesn’t. In many respects, I am my husband’s private nurse, and though I have a caregiving personality, nursing duties such as sterile technique, are new for me.

But I’ve experienced multiple losses, sudden losses, and will get through this strange grief. A retired Mayo Clinic physician, my husband and I have written a caregiving book together, and hope to sell it to a health publisher. This fall, I’m giving workshops about caregiving and anticipatory grief at a local conference center. I’ve decided that grief will not be the winner of this match; life will be the winner.

As we have done for 57 years, my husband and I will take things as them come, and face problems and joys together. I am proud to be his wife and love him more than ever.