For the past few weeks, my husband has been in a nursing home. After a recent hospital admission, we were advised that discharging him to this place ― “rehab facility” is the preferred term ― would help him rebuild his strength and enable him to transition back home. The idea that someone other than me ― someone with actual nursing/caregiving training and skills ― would be watching over him thrilled me.
In my more honest moments, I will admit that even his 12-day hospital stay felt like a mini-vacation from the constant caregiving I had been providing since last June. I actually begged the doctors to keep him hospitalized as long as they could ― run more tests, keep him for observation, anything but please don’t send him home just yet. I brought Thanksgiving dinner to the hospital and we celebrated the holiday there. I told a friend that it was the caregiver’s version of a day at the spa. All I had to do was cook a complete Thanksgiving dinner and transport it 20 miles. A walk in the park; a breeze. Just keep him, I whispered to every nurse, to every orderly, to every anyone who would listen.
On more than one occasion, I wept openly to doctors and nurses and social workers at the thought that he could be discharged before I was ready. “It will be fine. We will provide help,” they all assured me. But I know better. I know the reality. I know the scarcity of the “services” provided to family caregivers. I know that the care ― all of the care ― will land squarely on the family’s shoulders. My shoulders.
And so when the nursing home ― I mean “rehab facility” ― was recommended, I jumped for joy. I wanted ― make that, needed ― to entrust his care to someone else for a while, someone who presumably knew how to nurture, who knew the value of a kind word or soft touch. I wanted ― needed ― someone to do all the caregiving tasks for pay that I have been doing out of love. I wanted ― needed ― to be given a leave of absence from my job as a caregiver. I wanted the sheer bliss of merely having normal people’s problems for just awhile longer ― you know, worrying about my two teenage kids, working a full-time job, paying the bills and maintaining a house.
I wanted to luxuriate in deep concern over how well the school soccer team would do, whether I should make chocolate chip or oatmeal cookies for a fundraiser. I wanted to get my hair cut, to binge watch a Netflix show, to cook a meal without having to stick to renal-friendly meal planning and writing down carbs and phosphates and sodium counts. I wanted to not worry about how my husband would get to dialysis if I couldn’t drive him on Thursday, how my son would get enough behind-the-wheel hours to pass his driver’s test. I wanted to file clever tweets, to shop for holiday gifts, to take the dogs on a long hike like I keep promising myself I will. I wanted normal. Just for a little while: our old normal.
And because of all that, I pushed out of my head the images of old people hunched over in wheelchairs lining the hallways like zombies. I convinced myself that the smell of overpowering disinfectant was just proof that the place was clean. I ignored the chipped paint, the screen doors that were off the runners, the nurses whose impatience was tangible. I looked past the aides who wouldn’t make eye contact, who referred to patients by their bed numbers and not their names. “12 B needs to be cleaned up, can you do it Wanda?” When the man parked in the wheelchair kept asking for water, I found a cup and gave him some. He called me Donna and told me I was pretty. I wanted to erase him.
I wanted this to work. Desperately.
It was a good plan, at least in theory. And I’m intentionally not naming the nursing home because, quite frankly, they are all the same to some degree.
It’s not an awful place. They haven’t killed my husband ― either from neglect or kindness. They mostly ignore him with a dash of sometimes forgetting to give him his medications with food.
I did come upon him last Saturday sitting in his room alone in a wheelchair facing the blank wall. He was slouched over and when I first approached I thought he might be dead. He had been parked facing the wall by the driver who deposited him there after returning from dialysis. I have no idea how long he was left like that but I told myself that it couldn’t have been more than a few minutes.
He was glad to see me. He asked if I could get the nurse to help him back in bed and close the door so he didn’t have to hear the screams coming from the hallway.
I did that. And I sat there for awhile, watching my husband drift off to sleep.
I told myself that everyone has bad days, even nursing homes. That sometimes, a snapshot of a moment isn’t a true picture of a situation. The problem is that a nursing home is, of course, only as good as its most disgruntled worker. In an industry with turnover rates that range upward of 100 percent a year ― every job is filled and vacated at least once ― this is what we get. Human dignity is the first thing to go in the battle over the bottom line.
I stared at my husband’s chest, watching him breathe and grateful that he still could. And then I went home and hired an in-home caregiver that I really can’t afford. Because I realized that I can’t afford not to.
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