As I “sat hospital,” Dad returned to Crazyville to pack, sort, donate and prepare the downsizing that he now accepted as inevitable. He continued to wear his nicotine patch, sneaked a drink or two from a bottle he had stashed in the garage when mom’s family doctor had told him to ‘empty the house of all alcohol immediately’ and called when he had found mom’s wedding rings. We had all searched in vain and hoped we’d find them as he was packing. And he did–in the last drawer of the last piece of furniture in the spare room tucked in a small jewelry bag along with a stash of pills.
Mom had announced that they were now “divorced,” and proclaimed she had flushed her wedding rings down the toilet. This was the night before we drove her to the mental hospital. I felt such relief–for him. While the rings were but a symbol of their marriage of almost 6 decades, he viewed finding them as a chance that all would right itself in his world–a world that was crashing around him.
He had taken a side-trip with me to an assisted living facility near our home–a one bedroom. He found it incomprehensible that after living all of his adult life in homes with 3 or more bedrooms, living rooms, dining rooms, two or more bathrooms and a den, he was downsizing to a two room studio-like apartment with no kitchen, a bathroom so small that one had to turn and straddle the toilet to shut the door and a combo living room, dining area, and den. More shocking was the cost: $5,000 per month but meals and medication management were included. More importantly, he could remain living with his wife.
I had set out early each morning for a week visiting local assisted living facilities capable of handling Alzheimer’s or residents suffering severe dementia and potentially aggressive behavior—behavior we had witnessed from mom during the prior month. We were still under the belief that mom would need lifetime care for her mental breakdown and would never be able to live in any other type of environment. The one bedroom unit was the only one I found that entailed more than a 12 by 12 solitary room and was by far the cheapest. Cheapest? I had already visited units costing upward to $100,000 for mom alone and more if dad came as part of the package deal. We had already discussed the desperate need to sell their home, furniture, most of their household goods and access a home equity line of credit on our home of 20 plus years.
Mom continued recovering from shoulder surgery and had been placed back in lock-down following a weekend in the hospital wing. Her surgery had been delayed to late evening the night after her admission and her doctor performed a ‘miracle,’ saving her arm but warned us that given her current mental state and the extensive damage she suffered from the failure to promptly treat her injury, things did not bode well for a successful long-term outcome. This orthopedist, unlike Dr. Stephen Chow (her prior ‘treating’ doctor) spoke calmly, repeatedly touched my mother, was unafraid of her mental status and gently walked us through her future with this new shoulder he was going to have to build. He observed the incessant talking and manic mood preceding and following the surgery and was well aware of the conditions in the mental health ward not the least being the staff who was unable to do more than simply maintain the status quo and patients that we observed wiping bodily fluids on the walls upon our first visit. The surgery took place on a Thursday and he made sure she stayed in the hospital wing with a ‘sitter’ through the weekend to protect her and his work.
Leaving my husband in charge of mom for the following weekend, I returned to help dad. I had spent hours online begging people to take Mollie, their dog. We had finally accepted that the closest no-kill facility that was willing to take her with her medical issues was in Utah and we began planning that three-day round trip when I offered a facility located miles north of Lancaster, California, $600 and they agreed with the understanding that we would donate as many things off of their online wish list as we could find in my parents’ home as we were getting ready for a mega garage sale.
And so it began. We sold his prized tools, shovels, a life-time of equipment that he cherished for pennies on the dollar. Hammers–a dollar, no matter the original cost. Table saws, grinders, refrigerator, new freezer, buffet, china hutch, formal dining table and kitchenette as well as two sets of bedroom furniture, keeping the smallest found in one of the guest rooms for their new abode. Stereos, television sets, mixers, coffee mugs, silverware, formal china–everything was on the tables for sale. We had no more room for items that he wanted us to “store” just in case. My father looked as tired as I had ever seen him—and as defeated. His life had Post-it note price tags attached to it. And the prices continued to go down as few people showed up in a community that was hit hard by the economic failures of the country at large, even more so in this community 100 miles north of Los Angeles with little or no industry to keep it on the map. And then we were done and that which we couldn’t sell, dad had us donate to the local mission. My husband arrived and he and my dad took Mollie for her last ride to the no-kill farm, a few hours drive away. Dad returned with tear stained cheeks telling me she hadn’t even turned to look as she galloped off to play with a goat. Mollie was gone.
Following mom’s release the next week with a bandaged arm/shoulder, we had already begun to notice many changes in her personality. She was no longer manic but suffered from extreme short term memory loss. She could not tell you why her arm was in a bandage nor why she had been hospitalized. She would ask if she had been in a mental institution but had no memory of our response. She remembered no response. She no longer wanted a cigarette or a drink. She had no desire to return to Crazyville, nor did she have any real memory of it. She remembered Mollie and seemed happy that Mollie had found a farm to move to but didn’t comprehend that Mollie had been her companion and friend, just a ‘nice dog.’ She was surprised by the new facility and quite fearful of strangers. Unlike Dad, she was content to stay in the two room apartment and was terrified of trying to fend for herself, depending on dad to take her to every meal and depending on me to arrange and handle all medical care and transportation as well as her hygiene. Both were now dependent on me to handle their finances and the sale of their home.
As days turned to months and we made our way through the post-operative physical therapy and arranged and met their new doctors, I continued to visit Crazyville to oversee the sale of their property (not even a nibble for months) and the upgrades needed to compete in the horrific real estate market. I watched as our own bank accounts took a beating, hemorrhaging with every carpet that needed replacing, wall that needed painting, monthly mortgage on an empty house and the rent on the assisted living facility that came due. They had no assets to speak of except that house and it was losing value daily and we were forced to drop the already low asking price even lower. Finally, a HUD buyer put in an offer, all hopes of equity gone by this time and the house remained in escrow well beyond the original closing date. In addition, HUD required fees and repairs unlike any other lender and we were also required to purchase special and very costly insurance for a non-occupied residence. Even that was a challenge as most insurance companies do not participate in that service and we were forced to use Lloyds of London. All papers were signed and the nightmare of selling their home concluded in late July, 2008. I have never been back except to appear in court in the action we filed against Dr. Stephen Chow for medical malpractice.
Dad was building a new life for himself and his wife in their two rooms and his depression was etched on his face. An attempt by his internist to prescribe an anti-depressant left him agitated and he had the doctor change and then discontinue the medication. His high blood pressure was still a concern and we always worried about the possibility that his bladder cancer would return, but he had beat it back twice and he had no concerns about it being a problem.
Dad’s main concern was keeping busy. He was angry that the staff would gently knock and then enter his room, even when he was in his ‘skivvies’ as he would explain. They needed to give mom her medications and couldn’t wait outside the door hoping he’d eventually hear them—so as with all others in the facility, it was a knock and enter policy. This drove him to the brink of exasperation. He would take daily walks to the local area shops but the neighborhood was rough and we worried about his safety. The facility itself was locked down but it sat in a gang area with graffiti on every surface capable of being spray painted. He didn’t seem to see it or perhaps he didn’t care. He certainly wasn’t afraid. He just wanted to get away—to work in his garage—to toil his garden and plant his vegetables. But he couldn’t. That part of his life ended and this new chapter had begun.
Dad asked me to take a walk with him. We looked at the roses in the garden and he told me he had volunteered to take care of the grounds but that the administrator had said that he was not able to because of liability issues. I could see his heart was breaking off a piece at a time. He then put forth a suggestion, one I knew he’d been contemplating for months. “How about Mom and I get ourselves a real apartment and we try living on our own?” I threw all my objections at him but he was determined that I think about it and help him make it a reality. I crunched numbers, called food delivery agencies, found automated medical devices with alarms that helped those with hearing/memory issues, found a picture phone so that mom could call me by simply pushing one giant button with my face located on it as well as my husband’s cell and her grandchildren. We could cut the costs significantly if we found the right place.
I took Dad around to several places all located within a couple of miles of our home and within walking distance of shopping malls. Then we found the one we were looking for—across the street from the mall, restaurants like IHOP and Chilis, clothing stores, a Wal-Mart, and while the apartment was small, it had a washer and dryer and a full bedroom and living room, an upstairs patio and deck and full kitchen. I told him the only way I would agree to this was if he had the gas range disconnected and agreed to use the microwave only. I was afraid with mom’s memory issues, she would forget the stove was on and well, I simply couldn’t live knowing that would be an hourly concern. He agreed. We placed a down payment and first month’s rent on the unit to save it. I purchased the phone and medical device, reserved the parking with the management to make it easy for me to pick them up for their medical appointments and Mom, Dad and I had an outing at Home Depot to buy the only thing that didn’t come with the unit, a refrigerator. I then stuck around a week later to accept delivery. We gave notice to the assisted living and I took a deep breath. This might work. For Dad’s sake, I so hoped so.
Then IT happened–a week later. He was helping mom out the door of their assisted living unit and a staffer was blocking the path. Dad was forced to back up suddenly and fell. He broke his back. I was called and informed that he had been transported to Valley Presbyterian and I needed to get to the ER. Upon arrival, Dad was “missing.” No one could figure out where he had been placed. After hours of searching the hospital, I informed them that we should call the police. We had even checked the morgue. A construction worker inquired as I sat in a chair exhausted, angry and scared if I was looking for an elderly man. He then pointed to a gurney covered in a blue tarp. I rushed to it and Dad was under the tarp having been covered to protect him from ceiling debris while the construction workers were working on it and then, he had been forgotten. He was on a morphine drip and hadn’t a clue where he was or why he was there. He explained he’d been on a “submarine under water” all day. I was so relieved I actually laughed—the blue tarp and the noises. A perfect storm for what turned out to be a life-long memory that he never was able to shake.
He was finally moved to a room and I made sure he was directly across from the nurses’ station because he was a bit delusional given the earlier problems. Now, Mom needed my help. My husband headed for the hospital and I headed for the assisted living down the road. She was alone, she hadn’t gone to dinner, no one had come to get her and she was so frightened. She had no clue where Dad was or why and was waiting….simply waiting for someone. I made myself very clear to the staff and administration. For the price we were paying, someone needed to make sure she was taken to her meals and helped if need be with daily issues that might arise. I told them I would split my day between the hospital and mom but I couldn’t be both places at once. I had been informed by the orthopedist that Dad was going to have a long recovery period and our lives were once again taking an unexpected turn. There was no apartment in their near future. The apartment manager was wonderful, rented the unit to someone else and I sold them the unused refrigerator for half what we paid so that I wouldn’t have to haul and store it.
Early the next morning, I arrived at the hospital and entered my father’s room on the fourth floor. He was sleeping. I leaned down to kiss him and a stranger looked back up at me. That man in that bed was not my father. I had frightened both of us and headed out to the nurses’ station. “Where’s my dad?” “Who’s your dad?” “He was the man in that room but that isn’t my father.” “Well that is the only person that has been in that room since the shift change and we don’t have a clue where your father is.” “Then FIND OUT!” And they did. It seems he had a ‘cardiac event’ in the late p.m. and no one thought to call me. They simply moved him to the cardiac floor one story up. Things were going pretty rough at this institution and they only got worse before they got better.
The internist assigned to his case refused my repeated demands that they take him off of Dilaudid. Dad was becoming more delusional as the days turned into weeks. The internist would agree, show me the order, and then upon my arrival in the early mornings I would find my dad hallucinating and ask to see his chart. Each and every time the chart showed that the evening shift had administered Dilaudid.
I ran between the hospital and the assisted living facility numerous times throughout the day and found mom sitting in her own waste with that confused look each and every time I arrived. She would ask the same questions as before and I would give her the same answers. I had hit the wall when I had the administrator come to their room. We came to an understanding immediately. One more event and not only would my mother be moving, but I would sue the facility for all moving expenses and any extra costs that moving her entailed including a private nurse, if need be.
I also informed him that a young staffer was to stay 100 yards from my mother. I had witnessed her pulling my mother’s injured arm and speaking to her in harsh tones that many would consider abusive about urinating on herself. When I told the young lady to step away from my mother, she stepped towards me in a threatening manner. That was her last mistake. Not only did I outweigh her by 100 pounds, but my IQ was at least that much higher than hers and she never approached me again.
My husband and I decided that the only way to ‘protect’ my father was to set up house in his room and sleep there. We blocked all staff from entering his room and I checked every pill he was given. Slowly he made his way out of the stupor and was ready to be moved to rehab. I then visited the administrators of the hospital at that time to inform them what had occurred from admission in the ER to the current date. Instead of sending him to a off-premises rehab facility, they suggested that my father be the first patient in their new, state-of-the-art facility which wasn’t opening for a month or so. He could be their sole patient with everyone practicing on him and at his beckon call. I visited the facility and agreed. While dad continued to have daily hallucinations, they stemmed from past events and no new ‘memories’ were created by the move. While problems arose, like an attempt to discharge him while we were out-of-town for the weekend, we left the facility with dad walking with a walker and wearing a brace. And while many things rose to the level of medical negligence, we chose not to pursue any additional action other than the meeting I had participated in with the administration.
Dad returned to the assisted living realizing that his dream of apartment living and being on their own was impossible in the immediate and seemed content to enjoy those friends that he had in the facility who cheered his return. Shortly thereafter, we decided given the treatment that mom had received or hadn’t received as the case maybe, we would move them to the assisted living across the street from the ‘apartment that almost was’ which was smaller, but slightly less expensive, closer and in a great neighborhood with a better facility and dining area. Once again I was back on duty. They now required all new doctors and all those things that go along with a move of any kind. I had long ago stopped taking care of myself or my own family but was just in survival mode.
As we were adjusting to all the new doctors, their office requirements and the like, mom watched the Animal Planet and Dad watched baseball and golf and tried to fit in again to a life he didn’t ask for and certainly didn’t want.
During one of these “meet the new doctor” visits we found out that Dad’s cancer returned and while the cancer didn’t kill him, the doctor did.
PART V: To be continued–Dad’s journey ends, a settlement is reached on behalf of mom and Dr. Stephen Chow and we are forced to sue Dr. Ian Gale for Dad’s nursing care after he negligently prescribed the wrong medications and performed additional unnecessary surgeries without consent on my father while treating his cancer.