Forward: Nursing homes and assisted living facilities perform a necessary and worthy mission in our society. While this article cites only one of several adverse incidents that should have been handled differently and more expeditiously in my aunt's Happy Home Assisted Living, I am very grateful for the overall care, comfort and security they provided her over the years. The message here is not to alarm, but to alert family caregivers to the possibility of missteps in the system and to provide a course of action when diplomacy fails.
Even in the nicest homes stuff happens. Food fights; social clicks; the alpha residents and the cowering violets waiting, hoping to die; the intermittent restraining of an obsessive lover because the target of her brazen affections doesn't know her and never has. And the confrontations with the spitting man. This doesn't have anything to do with you, right? Your mom or dad or my aunt are still healthy enough to enjoy assisted living. They're safe. Or are they? The incidents mentioned in this paragraph did not take place among severely challenged patients in nursing homes. All occurred in the same upscale assisted living facility.
When you're not there, no one's watching. What you don't know about mom's nursing home or assisted living can hurt her. What you can do when you find out.
It's not easy. Your mother or, in my case, my aunt is now the trying teenager and you're the parent. And it hasn't been easy for years. But finally she's tucked away, safe and comfy in Happy Home Assisted Living. That wasn't easy either, finding just the right home with a skilled nursing wing attached in case she needs more care later. And her room is lovely.
At first you call or visit everyday just in case. You make sure to stop by and chat with the staff. Everything's going so well, considering.
Then it begins. My food is cold. There's a man. He's disgusting. He spits everywhere. They're not giving me my medicine. I don't like white bread. There aren't any towels. I just want some soup. They're stealing my hangers. They never give me enough coffee. And it's cold. It's always cold . . . Someone was in my room last night. I know it was him, the spitting man.
Is it imagination or dementia talking? Or does the elder self seek to control some lesser aspects of a life that is now controlled by everyone else. After all, Happy Home is large reputable pay-lots-of-money-to-join conglomerate. Surely they can't . . . run out of towels. But they did.
So many of the complaints replay themselves over and over even after you think you've gotten things taken care of, it's difficult to know which ones are real. Sometimes you intercede. Sometimes you try to help her work it out. "You know, Aunt Meg, if you don't tell them you don't like orange marmalade, how will they know?" If you don't tell them your room is cold, your meat is tough, you don't feel well, you want more coffee, they lost your pants . . . . What? The man is spitting on your food?
That did it. So I waited with Aunt Meg in her lovely room and I saw him. Hacking his way down the freshly carpeted hallway. Spitting left. Spitting right. But as soon as he saw me, he stopped his hacking and just walked on by, tall and straight (sort of) like he was off to play ball. When he rounded the corner out of sight the hacking began again.
I talked with the nurses' assistants. I talked with the charge nurse. I talked with the head nurse. Then one day, I got the call. "You need to do something about your aunt. She's taken it upon herself to stop the spitting man. She's following him down the hallway and every time he hacks she tells him, 'Don't you spit.' We think he might hit her. He raised his hand this morning at breakfast. . . She's so tiny. He's a big man. You know we moved him to another table. But still they glare at each other. And still he spits."
Within the hour I was at Happy Home again, talking with the head nurse. . . again. "He's got a compulsive disorder," she said. "We're working with the family now. But they don't want his doctor to give him anymore medications."
Several months had passed from the time I first talked with her about the spitting man. I was told no one else complained, just my aunt. Of course my aunt said everyone else was disgusted. Only everyone else was afraid to speak up for fear of retribution from the staff, she said. Something I too considered when formalizing a complaint to Happy Home's chief administrator.
But verbal words had failed. So finally, I put it in writing, careful to mention that the Agency for Health Care Administration would be contacted if the situation was not resolved (see letter below). Two days after my letter was mailed the residents at Happy Home were called to a meeting and asked to be patient. The staff was working with the family to find a more appropriate home for the spitting man. Two days after that the spitting man was gone. Lesson learned. If it's not in writing it didn't happen. If it's not in writing, you're not serious. But the question lingers. Why did it require family intervention to right this bad situation?
The next step would have been a phone call to the Agency for Health Care Administration's hotline. In retrospect, perhaps that should have been the first step after Happy Home failed to act responsibly on their own initiative.