I’ve let some time elapse before writing this blog entry. I didn’t want it to be just an angry outburst. What I want is to make it better for older people who don’t have the luxury of options my dad has. Specifically, I hope that the care of people living in nursing homes will improve. During Dad’s stay at The Lutheran Home for the Aged in Cape Girardeau, Missouri, I grew close to many of the residents. I care about what happens to them. I have friends whose parents are there now, and I worry for them.
As all of you know, in May my ninety-seven-year-old father lost a leg due to an aneurysm which released blood clots into his arteries. Following the surgery, he required weeks of rehabilitation. Being in a small town, the options for that were limited. The best place which had a bed available was The Lutheran Home. My sister and I made a visit, I called a neighbor who I knew had had a relative there. She said — sort of hesitating — that they hadn’t had any problems there, so there is where we took Dad. It appeared to be clean and efficient. It had all the necessary props. It seemed ok. On the evening my dad was admitted, his nurse was meticulous in his admission examination. She was friendly and professional. This blog post should not be interpreted as a blanket condemnation on all those who work there. There were many bright spots — people who clearly and genuinely cared about the residents/patients. Unfortunately, there was a certain lack of consistency in care.
This blog post will review several incidents which occurred during the the approximately six-week-long period in which my father was an inmate at The Lutheran Home while he began his recovery after his traumatic surgery. I use the word inmate deliberately. When a person is incapacitated, when he can’t get out of bed on his own, can’t use the toilet on his own, can’t dress himself, or leave the building, he is trapped. He’s just as trapped as a prison inmate. This post will include some information which will be upsetting and graphic. Be forewarned. If you can’t take reading about excrement, you might want to stop here.
During his first week at TLH a long, long wait for someone to respond to call light resulted in his having a bowel movement in bed. I found him lying in his own feces. Of course, this is no shock. They’re giving him stool softener and Miralax to offset the side effects of Hydrocodone. Shortly thereafter we discovered a serious “level three” bed sore near his rectum. To this day, he’s still fighting the bed sore, even though he is now in a lovely facility in Michigan. The skin of older people is delicate and they don’t heal quickly. Any irritation can lead to sores which don’t easily heal. The skin of older people must be kept clean and dry.
On numerous occasions I walked down halls in which call lights/alarms were on, while staff members sat calmly at the desk, completely ignoring them. Sometimes I’d time them. It was not uncommon at all to see call lights on for an hour before anyone responded. My dad timed his own call once. It was an hour and fifteen minutes. When I made my visits, I regularly helped out as many people as I could. Pushed them where they wanted to go in their wheelchairs, got them drinks, tied or untied their bibs at mealtimes. Some of the ladies joked that I should be on salary there. They need so much and there were never enough people to take care of them all. People were left sitting in the wheelchairs calling for help, or slumped over staring either at a blank TV screen or one with old black-and-white reruns. They weren’t watching, mind you. They were just sitting there, waiting to die. Activities planned at TLH consist mainly of bingo, bad music, and “Porch Perching.” Porch perching means they get their wheelchairs pushed out to the front entrance and look at the parking lot for a little while. They don’t even take them to the green areas where there are trees and bird feeders. They sit and look at the parking lot!
About three weeks after his admission, I attended Dad’s first Care Plan meeting, I was told he would be ready to leave in about two weeks. We made our plans then to move him to Michigan. It was complicated. Admission to a new facility had to be arranged, medical transport had to be scheduled, and I had to pack all his belongings and hire a moving van. Three days after all that had been planned – for two weeks later — we were notified that he would be discharged more than a week early because he was not making adequate progress in his physical therapy.
My sister hastily contacted the director of the assisted living facility where he’s been, CapeTown, to see if they could keep him until we could reschedule everything. We’d have to hire a full-time CNA to care for him during that time. We figured it would be about a thousand dollars.
Then I started thinking. During every phone call it seemed to me that Daddy was more and more groggy. I had seen his list of meds during my second visit – I spent a total of four weeks in Cape during his illness and recovery. After reviewing it, I realized that he was being administered all of the following medications: Hydrocodone, Xanax, Flexoril, Cymbalta, and Restoril (four narcotics and an antidepressant, prescribed for nerve pain). Good Lord! I had been on Hydrocodone and Flexoril (a muscle relaxer) for about a month once when I had a herniated disc. While I was on them, I could barely get out of bed. I slept twenty hours a day. No wonder he wasn’t making progress!
So, I began my campaign to reduce the drugs he was being administered — no simple process. My first call was to the doctor who was treating him while he was at TLH. This was a doctor I knew, because I had deliberately moved Daddy to another physician several years ago because I considered him to be Dr. Incompetent and Uncaring. He is a man who apparently went into the field mostly for the money. I’ve talked to several of my friends in Cape. I’ve never heard a good report about him. When dad was admitted to TLH we were told his new(er) doctor doesn’t work with TLH and Dr. Incompetent and Uncaring had been assigned to his case. Sigh. When I called his office to discuss my dad’s prescriptions with him, they wouldn’t talk to me because I wasn’t on his HIPA form. Now mind you, I am on his new doctor’s, TLH’s, and the hospital’s HIPA documents, but not Dr. Incompetent’s.
Step two was a call to TLH administrator, who referred me to the nursing director. She agreed to have the pharmacist review Dad’s meds. After another day of overmedication, he agreed that they should discontinue the regular two-per-day doses of Hydrocodone and Flexoril. They were to be administered only as needed. Whew! Within a few days, Dad was alert again and started making rapid progress in physical therapy. TLH agreed to keep him until his move to Michigan. I’m not sure that was a good thing, after all, but I was glad to have my dad back.
During my second visit to Cape after Dad’s surgery, Dad tells me they got him up to use the bedside commode and left him alone, sitting on it. He’s wearing his prescribed “stump-shrinker,” which has a strap leading up to a stretchy belt to hold it in place. The strap is across Dad’s rectum. He has his bowel movement, but the feces is trapped inside the stump-shrinker strap. He hits his call button. An hour and fifteen minutes passes before someone comes to help him. This certainly will impede the healing of the previously mentioned bed sore, not to mention the risk of infection.
He’s also fighting a mighty cough, due to fluid in his lungs, an effect of prolonged inactivity. It takes a visit from a nurse practitioner to prescribe a nebulizer. Within two days his cough (which had hung on for weeks) was gone. One wonders why it was a month before this happened.
For the entire six-week period he sleeps in his clothes every night. The CNAs apparently consider it too much trouble to change him into his pajamas. Luckily, my sister and I have bought him t-shirts and gym shorts to wear for PT, so this isn’t uncomfortable.
He’s supposed to be bathed twice a week, but tells me they have forgotten a few times. One time the CNA insisted on shaving him with a cheap, disposable razor, even though he has an electric shaver in his room. He tells her that, but she dismisses him. She is so rough with him that I find blood on his sheets in the morning.
The morning of his second-to-last day at TLH, my sister gets a phone call from a nurse explaining that a mistake was made with his medication, and he’s been getting the muscle relaxer again for two days. I’d noticed the grogginess creeping back. This explains it. The nurse says not to worry; she’s caught the mistake and it won’t happen again. Until it does.
On his last evening at TLH I take a quick trip to go get dinner, since the medical transport isn’t due until 9:30. When I return he’s crooked in bed and his covers are twisted all around him. He says he tried to call me, dropped his phone, pressed his call button for help, but no one came. He somehow crawled out of bed, retrieved the phone, put it back together (the back had popped off) and somehow, miraculously, crawled back into bed . . . without any help. It’s a wonder he hasn’t broken any bones.
The nurses bring in a bag with all of his meds, which I must sign for. He is so drugged-up that his speech is slurred and he cannot participate. I ask what meds he’s been given tonight, but the nurse is not able to tell me. I tell her what he’s supposed to have had; she says he hasn’t had that since Friday (this is Monday). It’s clear they have absolutely no idea what drugs he’s taken and what he hasn’t.
As the medical transport pulls out of TLH parking lot, I fear for him. I know he is so groggy he doesn’t know what’s happening or who’s caring for him. It’s a scary thing to send a loved one off on a 655-mile journey with two total strangers, especially when you know he’s in no shape to advocate for himself.
And so, how do I end this blog post? Well, I can only say that as a society, we can do better. If we love our parents, and most of us do, we have to do better. People are living longer these days. Who knows how long some of us will live? Many of us will undoubtedly end up in nursing homes. We have to find a way to make them places where people can live out their final days, weeks, months, and often years, in dignity and comfort, surrounded by care-givers who live up to their title, CARE-givers, not just job-doers. I can’t say that the people at TLH weren’t doing their jobs, but they were often not caring, and clearly, the administration of medications was — well — frighteningly inefficient.
They need to monitor the administration of medications with technology, as it is done in hospitals. This is 2015. There is no excuse for the frequent errors I saw during the time Dad was there. The nurses’ station should never be left un-monitored, call lights/alarms should be timed. A resident should never wait for more the five minutes for help to arrive. The CNA’s don’t know why they’re calling; it could be serious. Visitors should have to sign in and out. Anyone can go in or out of TLH without any staff member’s noticing or caring. I could walk in there today and go into any resident’s room and do just about anything. No one would notice. Names of residents and their room numbers should not be posted at every entrance. That’s a huge violation of HIPA.
There’s a new administrator there. I met with her a couple of times and spoke with her on the phone as well. I hope she cleans up the mess. In the meantime, if your mom or dad is there, you’ll have to monitor his/her care closely. Don’t assume he or she is being well cared for. We can do better. I know we can do better to care for our elderly loved ones. Soon, we will be the ones needing the care.
In the last week Daddy was there, three residents passed away. This blog post is dedicated especially to Mary, Myrtle, and June. My sincerest hope is that they are at peace, that they are running through hills of wildflowers while the sun shines down on them forever and ever, and that they are laughing out loud, surrounded by love.