By Lee White
UPDATE 5:48 p.m. CDT June 12, 2016: My mother, Ocella White, passed away a week ago today at Susan B. Allen Memorial Hospital. The massive infection she acquired as a result of the fall and/or her living conditions was just too much for her body to handle. Click here for her obituary. My father, Leon White, was released from Via Christi-St. Joseph Medical Center on June 8, the same day as my mother’s funeral, and is living in a private care home near Rose Hill High School. It is my sincere hope that by sharing this story, I can prevent other families from having to endure what happened to us. I wish to thank Dr. Paige Dodson and the nursing and social services staff at Susan B. Allen for providing excellent care to my mother in her final days.
It was about 1:45 p.m. Thursday. I was sitting in an examination room at the University of Kansas Medical Center. My wife, Sherri, was about to meet with her neurologist to discuss treatment for multiple sclerosis. I was playing with my iPhone as a researcher from the University of Missouri-Kansas City asked Sherri questions related to a study she was doing on how MS patients decide whether to use disease-modifying drugs.
A message popped up on Facebook Messenger. It was Diane Solorio at Vintage Place in El Dorado. She told me to call her right away. It was an emergency. I walked out into the hallway and called.
My mother, Ocella White, 84, had fallen. EMS was taking her to Susan B. Allen Memorial Hospital. My dad, Leon White, 85, who has Alzheimer’s Disease, hadn’t been able to tell the staff that she needed help, so she had laid on the floor for about three days. They were trying to get him to come to the main building from the independent-living apartment where they resided. It wasn’t safe for him to stay alone.
It hadn’t been safe for both parents to live alone for quite some time. I had tried repeatedly to help them — earnestly and desperately since early-2012 — but I had been thwarted at every turn by my mother, by their doctor, and by the system. It wouldn’t take long before I would discover that this latest episode would end much like all the others: With frustration, anger, and my resolving never to get involved again.
When Sherri and I arrived at the hospital, my mother was sleeping, sort of doubled over in bed, her breathing labored. We awakened her and Sherri, a disabled nurse who wears a weighted BalanceWear vest when she’s not using her cane, asked Mother some questions.
Mother had no broken bones. She had serious wounds on her swollen legs, a urinary tract infection from being unable to make it to the bathroom for days, and needed oxygen and a diuretic for congestive heart failure. Neither parent had apparently been taking medications at home for the past two and a half months.
We had brought documents known as durable powers of attorney for health care for both parents. These documents, which gave me authority to make health care decisions in the event they became incapable of doing so, worked well for us Thursday night and Friday.
While still at the hospital with my mother, I received a call from the nurse at Vintage Place. She told me they could keep my dad in the locked Alzheimer’s unit overnight, but that he was too bad off to stay there on a long-term basis. She suggested taking him to Via Christi St. Joseph Medical Center in Wichita for an evaluation. We left the hospital, picked up my dad at Vintage Place, and headed to St. Joe. It was a little before 10 p.m. when we arrived at the emergency room.
The doctor asked all the usual questions. Who is the president? What day is it? Where are you? The guy who graduated from the United States Naval Academy in 1953, was a whiz at calculus when slide rules were all the rage, and who earned Navy fighter jet wings couldn’t get a single answer right. He thought his wife’s name was Della. That was his mother’s name. He thought he’d been married twice. He hadn’t. In his pockets were his eyeglasses, some change, a Kleenex, and his Naval Academy class ring. We would locate his wallet the next day in his bathroom at home.
With the help of a lovely young admissions clerk named Ysenia, we were able to find my dad’s Medicare Advantage plan information (the one he has because I raised hell four years ago) and got him admitted to the hospital. In addition to the Alzheimer’s diagnosis, tests revealed kidney disease and a left bundle branch block of the heart. He was taken upstairs to the locked senior psychiatric unit. He was wandering the halls when we finished signing paperwork and left about 3:30 a.m.
We would take him some clothes the next day — the ones he had on smelled awful — but we were dead tired and needed to take care of my mother’s admission paperwork. We checked into a motel in El Dorado, got a few hours of sleep, and headed to Susan B. Allen where we met with a social worker and I signed paperwork. I also spoke with a social worker at St. Joe by phone about my dad’s condition.
Mother was busy with therapists who had her using a walker to get to the bathroom. A bit later, a technician came in to do an ultrasound of her heart. We excused ourselves to go eat lunch at a local burrito restaurant — the first real meal we’d had since lunch the previous day — and to go fetch clothes for my dad.
We met with Solorio, a classmate of mine who is the administrator at Vintage Place. At the time, the plan was to keep my folks at least in the same building, perhaps at Presbyterian Manor in Wichita (a suggestion from one of the social workers). I thanked Diane for all her help — she and everyone at Vintage Place have been wonderful — and we headed over to my parents’ apartment about 50 yards from the main building.
The last time I had visited was Mother’s Day. The place wasn’t clean then — hadn’t been since probably before I returned to visit from where we lived in Longview, Washington, the previous summer — but it didn’t reek of urine like it did Friday afternoon. What can one expect when one parent had been lying on the floor for three days and the other had Alzheimer’s so bad he routinely urinated whenever and wherever the disease dictated?
Thank God Virginia, a woman who works at Vintage Place and tries her best to look after my parents just as she did my grandmother and great aunt, had aired the place out a bit. Virginia’s sister cleaned for my folks until my dad became angry with her for doing the laundry about three years ago. Understandably, she felt unsafe and wouldn’t go back.
We gathered what clothing we could, added a couple of pairs of pajamas from Wal-Mart, and returned to St. Joe. To get into the locked unit, I lifted a telephone and gave a password to someone at the nurse’s station. The clothing had to be inspected by the staff — no belts, shoelaces, long drawstrings — they don’t want any hangings. This is a psychiatric unit, after all.
My dad seemed to know us. I don’t remember him calling us by name. At one point the night before, he mentioned that I was his son. He kept saying over and over how proud he was that we were there with him. The nurse we spoke with in the dining room as he ate dinner said he had become anxious that afternoon and they had to give him some medication. Severe weather coverage filled the TV newscast that played above the table where we sat. We spent a little bit more time visiting in his room.
The weather cleared. As exhausted as I was, I knew Sherri had to be worse. How she hadn’t simply collapsed from the effects of sleeplessness and stress on her already-fragile body, I’ll never know. We ate dinner in Wichita, stopped by to see my mother briefly, went back to the motel room, and crashed.
I woke up about 8 a.m. Saturday, grabbed a couple of large coffees at QuikTrip, showered, and returned to the hospital to visit my mother one last time before I took Sherri home to Harrisonville, Missouri. I had planned to return on Tuesday to meet with a representative of Presbyterian Manor and continue talking with social workers at both hospitals about what nursing home placement would be best for my parents.
My mother seemed better. She felt like insulting Sherri, which she had done frequently during the 20 years we have been married — especially since my parents’ conditions had deteriorated with age and Sherri and I had (stupidly, in hindsight) tried to help.
She said she had been talking to Virginia and that she wanted to stay at Vintage Place and put my dad in LakePoint. I was fine with that, but if I was going to continue making health care decisions, I didn’t want to work with Dr. Michael Rausch. You will soon discover why.
Mother made it clear that she wanted to continue seeing Dr. Rausch. I decided to settle the matter once and for all. I stepped out into the hallway and spoke with the registered nurse who was caring for my mother, a young lady named Amanda.
I asked whether she believed my mother was capable of making her own health care decisions. Amanda said she believed that she was. In that case, I told her, I would no longer be making health care decisions for either parent as the durable powers of attorney for health care granted me such authority only if both were incapable of deciding on their own care. Furthermore, I told her (and later the staff at St. Joe), I would no longer call the shots should my mother again become incapable of making her own decisions.
Sound harsh? Well, folks, this is the end of a battle I’ve been fighting for years.
It started in early 2012 when Virginia and others in the community reported that my parents’ driving skill was deteriorating along with their personal hygiene and my dad’s mental status. Sherri and I returned to Kansas from California in late February and early March 2012 and persuaded them to move into the same independent-living apartment at Vintage Place where they live today. Sherri also met with Dr. Rausch and my parents. I was attending to some of Sherri’s medical business on the phone and wasn’t in the room. Rausch said it was a good idea for my parents to move to Vintage Place and suggested they quit driving once they got settled in there.
After we left town, my mother backed out of moving to Vintage Place until I stopped talking to her for a couple of months. She eventually agreed to move. Everything I have tried to do to protect their health and safety has been met with the same sort of resistance.
Click here to view the e-mails I sent to the gentleman at Intrust Bank who manages my parents’ finances and to the attorney who drafted their trust agreement and the durable powers of attorney mentioned above. The e-mail to the attorney contains a Facebook note I wrote at the time describing the frustration I felt as a result of trying to help my parents. Oh, but it would get worse — much worse — and still nobody who could help in any meaningful way would do so.
In July 2012, I called my parents and something just didn’t seem right. My mother was slurring her words and wasn’t responding appropriately to questions. Fearing that she’d had a stroke or had let her diabetes get out of control, I called Virginia, who took my mother to the emergency room. She was admitted to the hospital for treatment of a urinary tract infection.
I left Sherri in California and returned to El Dorado. While there, I discovered that neither of my parents had been showering since they moved into the apartment in April. They claimed they had been taking sponge baths and that those were adequate. Apparently not, given my mother’s urinary tract infection.
I also observed that my dad’s mental condition had declined due to the Alzheimer’s Disease. He seemed even more confused than he had months earlier when I had visited. What if he took off in the car and became lost the way so many seniors do? Virginia was even more worried about their driving, too. They had been at Vintage Place for a few months. Relying on what Dr. Rausch said earlier in the year about giving up the keys, I issued an ultimatum: Stop driving or I’ll petition the state for re-testing.
They didn’t, I did, and Rausch signed paperwork allowing them to be re-tested. Click here to view it. Rausch stated on my mother’s form that an episode of syncope (fainting) had been related to sepsis, or the bladder infection she suffered in July. That is NOT the episode of syncope I addressed with the state. That episode happened months earlier when my mother fell while shopping at Dave’s Hallmark. She suffered a broken arm in that incident.
Amazingly, my dad passed his driving test on the first try. Remember, he got jets, so driving must not be that big of a challenge even in the throes of Alzheimer’s. It took my mother three tries, but she finally passed.
In late April 2015, I learned that my parents had been driving without licenses. I returned to Kansas from Longview, Washington, where we had been living. I brought Sherri with me this time. In addition to driving, my dad had been caught by the staff at Vintage Place urinating outside and wandering around the main building peeking in residents’ windows. Of course, my mother denied everything except some of the driving allegations.
Mother wanted to remain in the same quarters as my dad. At Vintage Place, she would have had to be in another wing because the Alzheimer’s unit is locked and the rooms there are single occupancy. We took them on a tour of LakePoint in Augusta where they could have lived together in an assisted-living unit that had alarms to keep Alzheimer’s patients from wandering away.
Mother feigned interest in LakePoint, but just as she had when we tried to get them to move to Vintage Place in 2012, she backed out as soon as we left town. I also received reports that my dad had still been driving and that Vintage Place staff had observed him walking along busy Twelfth Avenue at dawn.
On June 18, 2015, I asked the State of Kansas to step in and encourage my parents to move to safer living accommodations. The Department of Children and Families (since re-named Kansas Department of Aging and Disability Services) assigned a social worker, Tammy Bland, to investigate the matter. Bland was nice to deal with and spoke with my parents, but took no action.
Bland told me by phone that if Dr. Rausch wanted to order my parents (or at least my dad) into a nursing facility, he could so. Six days after I received Bland’s letter telling me that the case had been closed, I faxed a letter to Dr. Rausch asking him to act.
“Virginia (last name withheld), who has looked after two generations of my family, called this evening to tell me that my dad became combative with her,” I wrote. “He grabbed her hand in an effort to get her car keys away from her, then swore at her and threatened to hit her.
“She is planning to call your office in the morning to ask that you utilize whatever legal means are at your disposal to have him committed because my mother still will not agree to do so. I am fully supportive of this. In fact, it is probably the only way it will happen.”
Click here to read the 2015 correspondence with Dr. Rausch, the state, the gentleman from Intrust Bank, and El Dorado Police Chief Curtis Zieman.
The nurse at Vintage Place told me she contacted the state on or about April 28, 2016, not even a month before the incident that landed my parents in the hospital, and that the state took no action.
My only option to force my parents into a safer living arrangement would be to petition a court to have myself or someone else appointed their conservator. If their physician isn’t “on board” with that idea — which Dr. Rausch obviously hasn’t been — then what chance do you think I would have in court other than to go broke paying a lawyer?
Sherri and I moved to Harrisonville just before Christmas 2015. We chose Harrisonville because Sherri has a sister who lives there. It is also close to KU Medical Center, which has MS specialists who can prescribe drugs that other neurologists can’t or won’t. The day before we left for Harrisonville, Sherri received an IV infusion of one such drug at Oregon Health and Science University in Portland. Before you ask why we didn’t move to El Dorado — as if anyone in his right mind would have wanted to given the way my parents and I have been mistreated by the health care system — there’s your answer.
Everybody dies. Some get old before they do. Some don’t. Regardless, the incident that occurred last week was entirely foreseeable and preventable had either Dr. Rausch or the State of Kansas acted when I asked them to. For its part, I think the people on duty at Susan B. Allen yesterday could have done something other than nothing when I told them what I was about to do. I don’t give a damn what day of the week it was.
This time, I meant it when I said I’m done trying to help people who don’t want my help. Given that they are my parents, I have tried to help for far longer than I would have anyone else. I’m done.