Posted by Allen Rucker in Life After Paralysis on October 23, 2019 # Caregiving, Relationships

If you have had the same, unpaid caregiver – a spouse, relative, or devoted friend - for twenty-two years, like I have, you can’t help but feel guilt-ridden about 80% of the time. The other 20%, you are a team, working together, celebrating the small victories. But, day to day, there is so much done on your behalf by this person that you don’t think about. And when you do, you feel like crap.

There is an imbalance here that has to be mitigated in some way so you don’t foment resentment on your caregiver’s part or foment guilt or self-pity on your own. Writing in his definitive tone about the neuroimmune disorder, transverse myelitis, the genesis of my own paralysis, Transverse Myelitis Association President Sandy Siegel observed about the effects of TM: “TM complicates a good marriage. TM is going to obliterate a bad marriage.”

By all accounts, I have a good marriage because a) it has lasted fifty-two years and b) was not obliterated – only complicated -- by this awful condition. My wife, Ann-Marie, was once asked on air by Montel Williams why she stuck around after my injury and her answer was, “We had a history together…I was certainly lonely, that’s for sure, but we had a family and life has to go on.”

At that point, neither of us knew what was involved – the midnight dashes to the ER, the many operations, one doctor visit after another, and in recent years, constant, daily wound care treatments. The “daily” part is Ann having to change dressings. She is not a wound care nurse, but she could certainly pass for one. Hopefully, with many trips to outside medical help, we are at the end of a long wound-care regimen. Especially for her, it’s been an arduous, tedious, frustrating experience.

How do you deal with re-balancing a relationship in the wake of all this obligatory service unfairly thrust upon one party? “Thank you” and “You’re the best” only go so far. First, you do the obvious, mainly, do every damn thing you can do for yourself. Some of us are severely limited and need all the help we receive. For others of us -- paras like me – dependency can often be a choice. It takes an effort to do any small task after you are out of your chair and need to get back in it. It’s so easy to ask your caregiver to fetch things, near or far, that you can fetch yourself if you just do a better job of self-management.

Only recently did I hit upon a tactic that makes all parties feel better -- pay ‘em. That’s right, work out a way to pay your unpaid caregiver a stipend for all of his or her efforts. It doesn’t matter your level of income and expenses. If you have to sacrifice some pleasure of your own, all the better. It’s a matter of taking discretionary cash out of your pocket and putting it in theirs.

Ann-Marie was tickled when I suggested this monetary wrinkle. She asked other friends who are taking care of siblings or spouses and they too loved the idea. If your caregiver has a full-time job, all the more reason to acknowledge his or her after-hours caregiving work. Raise the idea and I guarantee, the two of you can figure out a reasonable solution.

Twenty-two years in, my wife is seriously committed to doing whatever she can to help me deal with this paralysis. That doesn’t make it any less of a drag for her at times. She’s certainly not in it for the money – spousal caregiving is not a lucrative career move -- but ironically, hard cash is an acknowledgement of both her effort and my gratitude.

I can tell you one thing – this new arrangement makes me, the caregivee, more mindful of my wife’s kindness and generosity and also more mindful of the fact that paralysis is a condition that the whole family “gets.” As everyone reading this knows, a lot of money goes out the door in paralysis-related expenses. A little more earmarked for your caregiver could pay dividends that far exceed the price tag.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.