I was married to my wife for 30 years. In 2012 she was diagnosed with Huntington’s disease. It’s a hereditary fatal brain disorder with no cure or treatments. It slowly took her away mentally and physically. She was 47 at the time.
For five years I was her sole caregiver, washing her, dressing her, feeding her, etc. In 2017, I could go on no longer and had to place her in a long-term care facility. I was burnt out. Shortly after, I filed for divorce because the cost of her care was bankrupting me. If she was single her care was covered. I had no choice.
Since then I have met another lady with whom I am now in a serious relationship. I am 55 years old. My ex is not capable of understanding cognitively, so she does not know. My family says they support me. My ex’s family doesn’t. I felt I needed to move on in life, but I still visit my ex daily and ensure her needs are met. My son is an adult professional who seems to be struggling with my situation. The woman in my life is great and supports me fully in this, and also ensures I keep in contact with my ex. Did I do right by moving on?
People generally talk a lot about how to care for a person who’s ill, but they tend to give short shrift to the caregiver, who needs a lot of care as well. Meanwhile, caregivers typically struggle to reach out and talk about their needs, because often instead of offering support, people judge them for having normal human feelings and desires. So they suffer alone, simmering in guilt and resentment and confusion. Nobody—including me—can tell you if you’ve made the “right” choice. The only person who can do that is you, and what I’m hearing in your letter is that you’ve already answered that question after having given it a great deal of loving reflection.
Now, is your decision understandable? Absolutely. Your life has been turned upside down emotionally, logistically, and financially—all while the one person who would normally be there for you (your partner) is unable to help. The caregiving is physically exhausting (especially if you’re also working full-time), the finances stressful, and the grief—of watching your partner’s very essence disappear—harrowing. There are other losses, too—of friendships, social activities, someone to watch Netflix or eat dinner with, someone to be intimate with.
What you’re experiencing is a disorienting kind of limbo—your partner is there but not “there.” She’s alive, but lives in a care facility and may not even know who you are. People who judge you may say to you, “What about your wedding vows?” and cite the concept of “’til death do us part.” But the thing about insidious diseases like your ex-wife’s is that they rob you of your partner while she’s still alive.
Few people can handle this alone. Some caregiver-partners find support groups helpful because they can talk to others who are going through a similar ordeal and are more likely to understand their feelings and experiences. Some choose not to date, while others realize that not only do they deeply crave a “present” partner, but also that having one provides emotional and practical support, making them much better caregivers to their spouses. Even those who are sick and in care facilities sometimes start relationships of their own too—perhaps they don’t remember that they’re married, or perhaps they’re simply lonely and want companionship and connection—just like their partners at home do.
This doesn’t mean the couple has stopped loving each other. In fact, you’re very lovingly seeing your ex-wife daily and taking care of her needs. And just as you’re dealing with your losses, your son is dealing with his, and your ex-wife’s family are dealing with theirs—all in their own ways. They may not be able to understand your choices, but all you can do is explain to them that in order to survive this tragic circumstance and also be the best possible partner to your ex-wife, this is the choice you’ve made. And when you do talk to your son—with curiosity and compassion—you’ll also be there to hear from him what it’s like for him to lose his mother in this way, and what his needs are.
Perhaps what you’ll find in these conversations is that they are convinced that they would have made a different decision, but the truth is they can’t really know unless they’ve been there themselves. And even if that were the case, what feels right for one person in this sort of situation doesn’t have to be what feels right for you. You might face some people’s disapproval, but you deserve to care for yourself—in whatever form works best for you—as you care for your ex-wife.
I want to close by saying that I’m so sorry that your wife became ill and that you’re struggling with how to handle the position you’re in. I want you to know that you’re not alone in grappling with this complicated and difficult situation—though you may sometimes feel that way because so many people are ashamed to talk about what they’re going through. Caring for a partner with a degenerative brain disease, whether that’s Huntington’s or dementia or Alzheimer’s, is becoming more common than ever, given how long people live today. Talking about what you’re going through, with both friends and family, will help you bear the pain of your loss—and maybe find some of the other people out there who know it all too well.
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