A Caregiver's StoryBy Ray Harwick
Cathedral City, CA
Do I have a story? I don't know. I feel like I'm failing. I'm a 60-year-old gay man with a 90-year-old husband who is in palliative care in my home after being in hospice care for five months. But that's sort of the end of the story. It begins with our dear friend and housemate whose health declined rapidly early in 2013 and threw the household into turmoil. He was ordered into a nursing home and that left me, alone, to care for my husband who required constant assistance because he has a mental impairment. I ran myself ragged going to the nursing home and coming back to watch over my husband. When things seemed like they couldn't get worse, I had an atrial fibrillation and was hospitalized with no one to watch over my husband and roommate. The daughter my husband and I raised from infancy had to come from Texas to California to take charge until I got out of the hospital. When I got back home, both my housemate and husband were in awful shape and I was scared that I might croak before they did. I hung on and took care of them but eventually my roommate succumbed to diabetes. I was emotionally devastated but I couldn't go crawl in a hole with a husband to care for. Ten days after my housemate died, our cat came walking through the living room, lay down by the pet door and died. Ten days after that my husband's blood pressure took a dive and I had to get an ambulance. A few hours after he entered the hospital, a doctor came in and told us there was nothing they could do and he recommended hospice care. You know something? I then started being afraid to ask anyone else I know that ordinary question: How are you today?
I know about isolation. I've been deaf for most of my adult life. I had been taking care of these two people I love and at times I didn't even know what they were saying to me. I was afraid to go to sleep at night because I couldn't hear them if one of them called out for help. I thought I needed to call out the National Guard for help! Instead, I called a fellow Queen. My housekeeper Rick lost his partner of 48 years just two years earlier, so he had gone through a terribly difficult experience or having to work while taking care of his partner in home hospice care. Rick hooked me up with a hospice care company and we got an experienced and sharp young man to live with us 24/7 and I finally was able to get some sleep at night. My husband's condition actually improved slightly. But we hit a snag with the caregiver. What made this caregiver unsettling is that he *never* expresses an opinion. Zip. Nada. None. Our experience is entirely the gay experience and we were accustomed to open and frank discussion about our lives and day-to-day experiences. He would sit in utter silence and never remark about anything and my husband noticed and I immediately perceived that he was withdrawing a bit. Our caregiver's persistent silence registered on us as disapproval and both of us began to curb what is normal, affectionate behavior for anyone, gay or straight. This has weighed heavily on my mind because I don't want to imply that our caregiver isn't doing a good job. He most certainly does do good work and I can't fault him on that account. Our social worker suggested we investigate making a change in caregiver companies for the simple reason that if we don't, we're really not getting to live in the moment the way we envision the last days of my husband's life to be; that unrestricted affection is as important as getting the meals and pills on time, the body clean and the pain medicated. So that's what I'm doing.
I started this story saying I felt like I was failing. Maybe that's because I'm an amateur at dealing with the end of life. By comparison, we all could probably embrace our amateur status and just say it's nothing unique, that it goes with the territory of living and that when we see the light start to dim in the eyes of the love of our life, our emotions are going to tell us we're bungling the job even when we know we're giving ourselves 100% to the work whether we're good at it or not. I don't have a social life. I don't have family or friends nearby. I just have this guy who still makes my heart flutter and I want to keep the love coming. So I'm pressing forward with the recommendation for change, amateur that I am, and hoping for the best.