As some of you already know, I am caretaker for my 82-year-old mother who is, to be perfectly politically incorrect, mad as a hatter with Alzheimer’s and Sundowner’s syndrome. I have two angels helping me—my husband, Allen and my ex-husband, David. I couldn’t do it without them. However, the yucky stuff of changing diapers, cleaning up diarrhea, and anything even close to naked duty, falls to me.
So, recently, mom, through her dogged determination to do what she wanted in spite of all common sense (yes I know she can’t help it), fell and broke her hip. She had a successful surgery and should be fine physically. Ever try to put a cat into a box that it doesn’t want to go in? Mom has that kind of stubborn determination.
This rant isn’t about her because I am becoming increasingly tolerant and compassionate as I learn more about this ravaging disease. This rant is about the “system,” or lack of one in this country. To recount our “adventure” down the rabbit hole of our medical system, let’s begin with the ambulance.
I called 911 because my mother had fallen and couldn’t get up without extreme pain. She had fallen more than a dozen times in a month but always managed to rally. This was different. The paramedics arrived quickly. They were efficient and knew their job. I as impressed.
This was my first experience with paramedics. I guess I should count my blessings, being 62-years old I’ve never been in an ambulance and only in a hospital for having my tubes tied, then for a hysterectomy. Anyway, back to the ranch. After the paramedics had mother on the stretcher thingy, another group of paramedics arrived, then another. My house runneth over with energetic young people in orange (or yellow) reflector vests and an air of competence and confidence. When that was sorted out and much conversation was exhausted, the original group continued their work. One young man with a very official looking clipboard asked me a dozen or so questions about mother and what had happened. I answered. He wrote. With a confident click of his pen, he thanked me and off she went to the ER.
I want to digress a moment and mention the ER. A Hellish place if ever there was one. I’ve only been in two of these in my life, once for a long ago defunct husband who squirted hydraulic fluid into his thumb when repairing a something-or-other piece of machinery. The other times were for my mother except for once with my husband who chose 4:30 in the morning to need medical attention.
The ER in Corona, CA has billboards all over the county advertising their NEW and IMPROVED ER. It sounded like they had remodeled and it would be a bright shiny place with newness, efficiency, and caring people just waiting to make our stay as good as a Hilton vacation. HAH! Maybe they replaced the light switches, I don’t know. It all looked the same to me. Dreary, dismal, crowded, cluttered, a bit shopworn, and filled with misery. Still, I am grateful it is here and within a couple of minutes from my home.
David came with me to the ER. He’s a dear friend since we divorced. If I had known our relationship would be this good, I would have divorced him years before I did. Allen, my sweetie has a near phobic response to hospitals. Plus mother yells at him a lot.
We arrived as they were wheeling her into the admissions hall. A tiny space with a small window at the end where she was signed in. The window is high above the person sitting on the other side of a wall. Peering through the window, I saw a tired and overworked looking young man who grudgingly looked up as I bored a hole in his head with my super power mental ray. Blady Blady Blah, so on and so on and so. She’s waiting for an available bed. She’s waiting for an available bed. She’s waiting for an available bed.
About a century later, they wheeled her into the place with those vinyl mattress beds covered with a thin sheet and a thin blanket. We were told to wait outside until called. An age as long as the Triassic passed. We were called in. The usual waiting, waiting, waiting. Mother not understanding why she was there. Crying on one side of our curtain, moaning across the walkway, crowded, people bustling, hospital smells, noise, staff looking tired or busy, busy, busy. I was wondering what was New and Improved about the place. It looked the same to me.
Waiting, waiting. Finally, a non-tired looking peppy woman came in with a clipboard. Asked me a thousand questions or gave me mucho pages of stuff to fill out, or both. I don’t remember. I gave her my credit card to pay for her stay. Off she went. Waiting, waiting, waiting. She returned, “Whaw, whaw, whaw, yada, yada, yada.” All important stuff I’m sure.
Some time later, another person came in, did some things, asked some questions, and wrote down much of the same information I had given previously. Later someone else asked the same questions, and wrote down the same information. After another time period of a few thousand years, she was taken for X-rays (twice because they didn’t X-ray the right places before). Results after a few hours were that she had broken her hip (DUH!). Surgery would be right away. By right away they meant six or more hours later. More paper work with the same questions answered and same information taken.
I was told there was nothing else for me to do and I went home. Much later, I was called by the hospital. Her surgeon, I was told would like to talk to me about the procedure. He would be there at such and such time. I dropped everything and went. Surgeon was nowhere to be found. Surgery was not scheduled. No one knew anything. Mother had not eaten since the day before and it was now near 7pm. She was agitated, frightened and kept trying to get up and walk home. More paperwork with the same information.
I was told that they had a “sitter” with her and that there would be someone with her 24/7. Well, that was almost true. Surgeon finally arrived. Said a few sentences to me that didn’t need to be said, gave me his card and that was that. Off she went to surgery. Now, I don’t want to dis her surgeon. He was personable, pleasant, and experienced. I felt confident leaving mom in her hands. And, in the end, he did a bang-up job. In fact everyone at the hospital was pleasant, helpful, and ready to be of service in any way they could.
My only complaint, outside of the general chaos, was the incessant repetitive paperwork and questions that were answered over and over and over and over again. Are all these reams of paper I, or someone else, filled out filed one paper at a time in a thousand confidential files? Does no one speak to anyone else? I was irritated at this point, but life had more in store for me with even more mountains of paperwork with the same information on it and no one knowing anything.
She was, after a few days, released to a skilled nursing facility for rehab (and, yes, several people asked me is that is where she would be going). Since I had already consented and filled out numerous forms to that effect, It seemed odd that no one seemed to know.
I am told, that as these places go, Vista Cove is a nice place. I wouldn’t know. People were very pleasant and professional (well-most of the time). I filled out the usual ream of forms with all the same information I had filled out before.
She was there for about three weeks and released to go home. Way too soon, but hey, that’s insurance for you. More paperwork. I was told one thing about the meds and equipment she would be provided with and the reality was quite different. No one knew anything about what the other people had told me or asked me. I was told that the equipment would be waiting for me at the facility when she was released (in a rainstorm). Wrong again batman. I was told that it would be delivered within 2 hours to my home after she was released. Really wrong. I called and ranted. I received a call back that the equipment would be there by 7pm. WRONG!
The next day, I was told that the equipment had not even been ordered. Rant, rant, rant. Okay, it was finally ordered and on its way. Approval for some things, not for others. Of course. It would cost such and such. Yeah, yeah. Just get it here! More paperwork.
I left out several instances of paperwork. Aren’t you glad.
After a few days, the home health care nurse arrived. Not the care I was promised. Only one visit approved. He took her blood pressure and more paperwork filled out with all the same information. He didn’t even know that she had Alzheimer’s or what he was there for. Not really his fault. He simply wasn’t told.
It was a nearly useless visit as far as I was concerned. Lots of words that have fallen away like melting snow. He was pleasant and efficient, but it was useless. I was told there would be a home health care nurse there for several hours a day a couple of days a week. Wrong! I was told an occupational therapist and a physical therapist would be there for several days a week. Wrong. We are allowed a physical therapist who, although a very professional and likable person, comes and has her walk in her walker, kick his hand with her foot, and rotate a thingy like a bicycle pedal for a couple of minutes. WTF! I could do that! Plus it agitates her and she fights him on it. AND, there was even more paperwork. AND he was also clueless about her condition. Again, not his fault. It is the system.
So now for the point of my rant. President Obama had a goal for our medical system to be centralized or computerized. We are wasting paper, time, and resources with this incredibly chaotic system. It annoys me and leaves wide opportunities for abuse, mistakes, and possibly dangerous errors. I was stunned at the state of the SNF (skilled nursing facility). They were overworked, tired, and in a state of chaos most of the time. I had her med schedule changed because the way they were giving them to her caused problems. It didn’t get changed. The doctor I was told would be in charge was someone else. Her clothing kept being taken and given to others because no one told the laundry personnel that I was going to do her laundry instead of them. When mom needed immediate assistance one day, it took ten minutes for a nurse to come, then she needed help from her assistant who never arrived. It was a nightmare. No one knew anything about what was supposed to happen. I really felt like I was in a circus with the clowns running around in circles.
On the other hand, personally, the men and women there were dedicated, hard-working, and infinitely patient. They did there very best to give quality care, but as I said, they were overwhelmingly overworked. And the paperwork must have disappeared into the black hole of someone’s paper-filled file cabinet because it was impossible for anyone to have access to even the most basic information when needed.
Something needs to be done. I only touched the tip of the unbelievably out of control experience my mother and I had. This system is broken and is going to collapse unless they come into the 21st century.
Phew! I’m done for now. I’d love to hear from you about your opinions, thoughts, and experiences with the medical circus.
Thanks for listening.
Anita in Wonderland – Chief Confetti head.