I was just looking for a few days off. Five days actually, to fly out-of-state to see my nephew get married and visit my sister. Rich was too fragile to go and I couldn’t leave him alone for long. Once, in just one hour, while I was out buying groceries, he locked himself out and fell on the patio, gashing his elbow so badly that it took a month of wound care to scab over. When I’d left him for a two-day writers conference, he was sick when I got home. Yes, a friend, as promised, had come by and taken him to lunch, but didn’t stick around for the next twenty-four hours to handle the restaurant food aftermath.
When hospice suggested respite care in a nursing home, it sounded like a good deal. Rich would have 24/7 attention, warm meals, a supply of on-time medications and an opportunity to socialize, something I was always trying to nudge his way.
The wedding wasn’t until May, but we started the selection process months earlier. I took a nurse friend to coffee and scribbled on a Starbucks napkin. Two lists. The five best nursing homes in our area and the five worst. Where she would go if she were incapacitated vs. places that might kill you if you stayed there.
Rich and I made drop-in, not scheduleld, visits. It took over a month because one trip on a good day pushed the limits of his stamina. We gave them all the whiff test and checked for activity and happy faces. We eliminated one because the rooms didn’t have TV. The other four seemed fine. When the time came, only one had an opening. That’s the scary thing about nursing home respite care. You can do all the planning you want, but availability is the key. You only have “open beds” to pick from no matter where they are.
The facility promised to meet all of Rich’s needs. Yes, he would have a TV with closed captioning in his room. Yes, I could bring a supply of his favorite tapioca to be kept in the small refrigerator at the nurses station. The placement director told us to arrive early in the day so we could meet the dietician to ensure foods that he could eat. Yes, the nice bath aide who helped him shower twice a week at home could keep on schedule and assist him at the nursing home.
It started out badly and never got better. When we showed up on the appointed check-in morning, no one was expecting us. In hindsight Rich would have done better left at home with a series of drop-in visitors than what did happen to him, most of which I didn’t hear about until after my trip.
In five days they never gave him drinking water. He never got a side table on wheels either so maybe that was the problem. (No place to put the pitcher of water.) When he asked for water they gave him a thimble-sized pill cup. He asked about bottled water in the vending machine and was told the machine hadn’t worked in ages, contrary to the commentary on our walk-through tour.
They didn’t have his medications nor a sense of urgency that they should get them. They wouldn’t allow pain pills brought from home, so I got to make frantic calls to hospice and the pharmacy delivery driver while I was packing my suitcase.
Rich couldn’t eat the food. It was all pureed and tasted nasty. He never got to eat any of the dozen tapioca cups that I wrote his name on in fat, black ink. They were thrown out at the first nurse shift change. We never met the dietician although she was scheduled to meet with Rich about his preference on the day I took him home.
The bathing arrangments didn’t pan out. When the bath aide showed up at the usual time, all the showers were full or spoken for. No one mentioned that you had to sign up for a shower stall. So the only bathing Rich got was a quick soaping and a hand-held rinse in a dark corner.
Rich was alone in his room during the day so he got some sleep. At night his roommate’s PTSD (post traumatic stress disorder) outbursts and oxygen machine thumping made it impossible. There was no telephone in his room. When I called him he used the phone at the nurses station where he was afraid to verbalize anything besides he was “doing fine.” I could have gotten him a cell phone if I had known he would be standing out in the hall, but then what would I have done from afar to help?
“Did you have a good time at the wedding? Did you enjoy your trip?” That’s all Rich wanted to know when I started hyper-ventilating as I heard the details of his nursing home stay. Yes, it was great to be somewhere else, having fun. And Rich did survive thanks to hospice personnel and a friend who came by to take him on “outings” which mostly involved bringing him home to relax and get stuff.
To be fair, they did come through with the in-room closed captioned TV. If there are decent nursing homes out there, Rich and I spent a lot of time looking, yet didn’t experience one. But I learned what I needed to know. No matter how terminal he was, I would never give another nursing home a chance to kill him.
Tags: cancer patient, caregiver stress, nursing home, nursing home selection, respite care
January 27, 2009 at 11:46 pm |
Wow! Thank you!
I always wanted to write in my site something like that. Can I take part of your post to my blog?
Of course, I will add backlink?
Sincerely, Timur I. Alhimenkov
February 5, 2009 at 11:35 pm |
Your site displays incorrectly in Opera, but content excellent! Thank you for your wise words.
March 7, 2009 at 6:06 am |
Bravo! I actually worked in a nursing home, many years ago. I ran myself ragged for the patients – and learned their family only popped in to chat. Then one night, I delivered a tray to a patient who hadn’t had a visitor, or spoken, for 2 years. I promised to be right back to feed him, as soon as I delivered the rest of the trays. He was dead when I came back – 5 minutes.
I then experience the toe-tag…
Those last years my mom was in extended care, my dad was there, everyday, all day. I thank him for that!