Ten years has been the duration of my husband’s disease, which has made his movement difficult, and has weakened his cognition. The progress has been slow, starting out mild, and reaching advanced stages in recent years. In his early 70s now, he has various additional conditions, contributing to his poor health.
We reached the 30-year mark of our happy marriage, and then my new role as his full-time caregiver became another milestone for us. He is no longer independent at home, as he had been while I worked full-time during most of these 10 years of his disease. And, now during my full days with him at home, I cannot be the same person I was when we were together only evenings/nights, and weekends.
When he was alone on weekdays, and my caregiving role was evenings/nights and weekends, he had autonomy for his daily meals, medicines, and routines. As his caregiver 24/7 now, by contrast, I cannot spend the days in monitoring his success — or lack thereof — with the autonomy he’s had previously. I’m in this role, specifically, because he needed that much help to stay safe and well. Naturally, I’m not thrilled about this, and neither is he. However, we were happy enough to choose that option from a group of equally challenging options.
My love for him has become more in line with, possibly, a mother’s love for her own aging father. My caregiving for my spouse is now far from romantic, in my mind. I suppose the spark is gone for me, due to my own physiology as much as my repurposed love and affection for my husband. He’s quite different, often behaving more like a rebellious teenager would behave with family. Regardless of the stimulus for his spontaneous, frequent “be sexy now” instructions to me, I’m usually not inspired and therefore will not engage. To which he generally will choose to continue asking/ instructing/ taunting/ begging until he gives up.
I have no one to talk to about this, although I receive a lot of encouragement from friends and family. This is just such a very personal “taboo” for discussion, is it?