When Spouses Become Caregivers

Keep in mind that it's not only me. It’s Kim too. We’re both suffering from the effects of MS.

Sure, I'm the one who has the disease, the one whose central nervous system is dissolving day by day. I’m the one who can't work, who sits in a wheelchair, and who grows more dependent on others each day. But I'm not the only one suffering. My wife has decided to come along for the ride, and that makes me question her sanity just a little bit.

Make no mistake about it; this is a choice. Many marriages break up in the wake of an MS diagnosis. I prefer to think that MS either accelerates the inevitable, or becomes the last straw, in marriages that are already flawed. In strong marriages like ours, it seems inconceivable (but yet I know it isn’t) that a tragic medical diagnosis would drive a wedge between committed partners. My point is that Kim remains with me by choice, and for that I am grateful. I’m also in this marriage by choice. But let’s be realistic. If I wasn’t happy I wouldn’t exactly have other options. I don’t feel trapped at all, but I’m sure that others in my situation or in Kim’s situation do, and that is a sad thought.

We shouldn’t assume that all MS breakups are about heartless, healthy spouses leaving helpless, sick ones. Those of us with MS need to work hard at being easy to care for. Maybe I’ll ask Kim to author a future post about just what easy entails. I’m guessing I would get a passing grade in that regard, but not an A+, perhaps a B-.

Here are a few practical examples of how Kim's life has been affected by MS:

She no longer spends even a single night away from home. I need help getting into bed. I need help in the middle of the night. I need help getting out of bed. We should formulate a backup plan in case she becomes suddenly ill, unexpectedly injured, or just temporarily misplaced.

Kim is on her own when it comes to maintaining our household. All the chores, all the seasonal activities such as raking leaves and shoveling snow, all the minor repairs, everything that needs to be done to keep our house in good order, is accomplished by her. She is so damned frugal (cheap) that she won't hire anyone to help. She is so damned conscientious (anal) that she won’t do anything half-assed, even if she is exhausted.

In some marriages the opportunity exists for at least one spouse to consider risky, more fulfilling, or even more altruistic career paths at some point. Also, other couples enjoy at least the fantasy of one day picking up and moving to another part of the country or another part of the world and starting over. But none of those options are available to us anymore. We rely so much on Kim’s income and benefits that she is essentially restricted to her current employment situation, or only the most circumspect growth opportunities therein. It’s a good thing that she loves her job.

And here are a few, more intangible examples of how Kim's life has been affected:

She must, on occasion, wonder what my continued progression is going to mean for her. Is she going to be able to handle it? What will be expected of her? What if she falls short of what is required?

I may appear to be well-adjusted and content, and to a large extent I am. My physical needs are being attended to. But Kim must sometimes wonder if I’m not hiding something from her due to pride, shame, or concerns for her happiness (who, me?).

None of us knows what lies ahead in our lives- lightning strikes and cancer diagnoses come to mind- but for the spouse of somebody with a chronic disease like MS, this level of uncertainty is amplified, and so is the level of associated stress.

Disability introduces some interpersonal communications challenges. I'm guessing that Kim has conversations with herself like these:

• Should I offer to help with what he is struggling to do right now, or should I leave him alone so that he can accomplish it himself? Is this a time to intervene or a time to observe from a distance?
• If I dare to go out and have fun without him, should I feel guilty for leaving him behind? Is he really okay at home with Phoebe tonight?
• Mitch is capable of independently accomplishing what he’s asking me to do for him, although it would certainly be easier for me. Is this one of those times when I should push back, or would life just be simpler if I do what he asks? (From my perspective the identical situation might be viewed like this. I know I can probably accomplish this task by myself, but it will take a lot of energy and may cause significant frustration. Should I ask her for help or should I just suck it up and do it myself?)

So, the next time you see a couple where one partner is handicapped, I suggest you reserve as much or even more admiration and compassion for the caregiver as you do for the disabled person. One of them may be stuck inside a bottle, unable to escape. But the other one is peering into that bottle through clouded glass, trying to figure out what the heck is going on in there, and wishing she could slip her hand inside to help.

And how do I feel about this situation? I am so fortunate to have a life partner with as much empathy, energy, patience, courage, and love as Kim. You might think that having my wife become my caregiver would drain the romance out of our marriage, but I prefer to look at it this way. I am head over heels in love with my sexy caregiver, and we are embroiled in a steamy love affair. How cool is that?