The Ethical Dilemma: Whose Life is it Anyway?

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Whose Life is it Anyway? I have been married for eleven years to a man who was diagnosed one year ago with Huntington’s.  Our marriage has been a roller coaster of him losing job after job, wrecking car after car, and me guiding us through one disaster after another. It is clear now that all of these issues stem from his illness, and he was beginning to show cognitive symptoms when we married; I just did not have a clue. His family (abroad) knew that he likely had the disease but did not tell us; they just let us suffer in total bewilderment and deprived us of the ability to plan financially before we were broadsided with this diagnosis.

I am tired. I have thought of divorce before but we always had our back to the wall one way or another, and it seemed cruel. I kept waiting for things to settle down and they never did. About three years before his diagnosis, I realized that our lives would never be stable unless I took on all responsibilities. If he was working and bringing in income, great, but I never depended on him again, and things settled and I was able to rebuild our finances. But my career has taken disastrous hits.

Now, he is on disability and for the first time actually has a stable income. Instead of firing him, his last employer sent him to a doctor (yes, we’d been before), and he was diagnosed instead of booted out the door.

He is unable to work, to drive, and I do everything. He has tantrums, is irrational, and frankly, it is exhausting living with someone who veers between fairly reasonable, though he has to be reminded to bathe, brush his teeth, and wear a coat when it is cold, to someone who suddenly turns into a tantruming toddler. Sure, I know this is an illness. Nevertheless, being screamed at, berated, and viewed with hateful suspicion over, say, asking him to wear a coat in below-zero weather, is infuriating, humiliating, and exhausting. I am not a saint, I don’t have a heart of gold, and I aspire to neither.

I am exhausted, and I want my life back so badly. I have seen him through seven job losses, eight moves, three totaled cars, and two burned up engines in eleven years. Our lives are stable now, but I am so tired. I don’t want to do this anymore. His family—mother, sister and two sons —(not mine)—have abandoned him. I have three children and now he has tantrums when they come to the house, and I feel like I cannot even have my children in my own home. I am no doormat and this crosses a huge boundary with me.

I looked at assisted living places a week ago and came home and simply sobbed. It feels cruel, and unkind, he is still young, in his 50s. It seems so mean to put him in assisted living when he is so happy at home because I have made us a very lovely home and take excellent care of him. But he is of course no husband now, just a sometimes okay, sometimes hateful man, who is slowly destroying my career, and narrowing my life to a tiny circle of hell.

Really, it comes down to a choice between him or me. So far I have chosen him. This is my issue. I would love your insight.

–Can’t Take Any More

Dear Can’t,

Your story is so utterly wrenching and will be familiar to others dealing with loved ones who have dementia, mental illnesses, and other debilitating, chronic or progressive maladies. But the simple answer to your question—a choice between him or you—seems clear: Since there is little hope that you can reverse his decline, you must choose yourself when forced with a win/lose choice.

I’m guessing you are also around your 50s or younger, with many years ahead of you, and many things—your children, your career, your life—that you have the capacity to enjoy. You need to frame what you do with respect to your husband in the context of optimizing your own life as well as his. When you can make choices that are good for both of you, great. But when choices favor either you or him, give yourself permission to choose yourself.

Since you’ve had the diagnosis and disability benefits only for a year, perhaps you haven’t yet explored all the social services available to you. Ask your healthcare personnel, human resources and others for recommendations, and do the research to determine whether you are eligible for assistance such as in-home caregivers and other medical and social services. Just having a caregiver who can give you time off can be a huge boon. Consider joining a support group for people facing similar challenges—they can be tremendously helpful both in finding coping skills and available programs, and in providing community and companionship with people who truly comprehend your situation. And consider approaching your husband’s relatives to contribute to his care in some capacity, financially or otherwise. Maybe they will favorably surprise you if you just come out and ask for their help.

I’m not sure why you felt so negative about the assisted living facility. Although there certainly are some horror stories, there are also many places where the residents are content and well cared for. Perhaps there’s another facility that you’d feel better about, and where you could visit your husband as often as you wish. But I can’t imagine how happy your spouse can be at home when he’s making your life a living hell. Again, if you can find no solutions where one of you doesn’t suffer, imagine your roles were reversed and he wanted you to have the optimal quality of life, even if it meant sacrifice on his part. You’ve had eleven years of things getting worse. Focus on making the next eleven better—for you, if not for both of you.

You might appreciate the film Away From Her about a couple in which the wife (played by Julie Christie) is declining from Alzheimer’s. It’s very touching and bittersweet and, in its own way, very positive and optimistic within the sad reality of the situation. You never know how things may turn out.

Unwelcome Invitations: My boss and his family are very religious and are not aware that I am an atheist. He has invited me and my family to functions at his church on several occasions, and I have been lucky enough to have previous engagements each time so I didn’t have to come up with some excuse. His 11-year-old daughter told me the other day that she has decided to get baptized and wants me and my family to come to her church and be a part of it. I was polite and thanked her for the invitation and said we might be able to make it. When the date is decided, I don’t know how to decline the invitation without lying, hurting her feelings, or letting the cat out of the bag. Any suggestions?

—Sorry, Booked Up For Eternity

Dear Booked,

You don’t raise the possibility of attending, so I will. I think it’s lovely that an 11-year-old has personally extended you an invitation to a major event in her life. It demonstrates that she cares about you and feels you would be a valued addition to the assembled friends and relatives. People support others by sharing their milestone events regardless of whether they share the trappings. Have you considered that it might be a nice and possibly even enjoyable thing to do, not only for the daughter and your boss, but also for yourself and your family as part of this work/family community?

But if that’s really anathema to you, my next question is whether there would actually be any repercussions if you “let the cat out of the bag.” What would happen if you mentioned to your boss that you are not religious (or at least not his brand of religious) and that, as a rule, you never attend any church functions—but you’d be delighted to join him in other, secular types of social events? Is there anything about your employment that requires you to adhere to his religion? Are there employees of other faiths or no faith in the company, and do they accept invitations to his church events?

If you have reason to believe that telling your boss you don’t accept his religion, or any religion, would jeopardize your employment, then you will need to beg off. A simple “I’m sorry I won’t be able to attend” should suffice. And you’re not lying; you have a prior commitment—to steer clear of religious functions. Be prepared with a response if your boss presses for details. Try something as vague as “It’s personal” or a white lie (just be sure it’s bust-proof). If all else fails, you can stay home that day due to a (religious) allergy attack.

Whatever you do, it would be lovely to send the daughter a thoughtful gift along with a note expressing your congratulations on fulfilling a goal she set for herself.