|
Some of you know I've taken care of my mom for a long time. Most don't. She lived long. Her funeral occurs Monday, her 93rd birthday.
I started when she was still driving, while I worked. Progressed through various trips to the hospital, slowness of Parkinson's. Then the cane. She stopped driving. The walker. The wheelchair. Finally, the loss of hand control, being fed by hand.
The last five years have been 24/7. Three hours to feed a meal. The last few months we went from soft food to pureed. Still we went out to eat with family on Fridays, church on Wednesday evening, and many doctor appointments, usually on Mondays when possible. Porch sitting with neighbors gave a few hours of listening and watching the playground across the street. She slept a lot as her body wasted to below 75 pounds, slowly, over the last ten years.
The social workers did not like her being skinny.
I don't blame them for that. She liked to eat, and did. And, when she fell from the bed as I locked the wheelchair they found their first chance to wrestle her away from my care. Her skin like onion paper tore on either side of her forehead knot. Since I was readying her for her doctors appointment for Iron transfusion I called them and they said to take her to emergency. We have a van with a wheelchair lift. Off I went.
Mom said something like: "He's really done it to me this time." while in the emergency room. It's unusual for her to be able to get out a full sentence. The Parkinson allows the first two or maybe three words escape. The rest won't have enough air. Well, I think she probably meant her son goofed again and needs to be corrected by his mother into being more careful. She denied that I abused her over and over again while in the hospital for a week.
But, social workers had made up their minds.
Her weight went up two pounds. TWO. The social workers went to work quietly assembling their notes. They called us to a meeting days later armed with mom's statement and her weight gain. But, by then, the added weight from gallons of saline solution had dropped back down, you got it, two pounds. The doctors heard my mom say that I never abused her. She left the hospital back in my care exactly at the weight she started. That was January's end.
The social workers got burned.
July. Returning from church, mom did not eat much of her Dairy Queen shake. Got in and she said she felt nausea. (It was a hot week and the air was out in the car and had been out a day in the house but fine at this point.) Called a telephone nurse and ma noted a pain in the neck, nausea, and she seemed cold and clammy. "Give and aspirin and call 911." I had her to hospital before 911 would have arrived at our house.
They decided to keep her. Had to wait extra hours for BCBS to okay the stay. At 5:30 A.M. I finished the last questions for the fourth floor nurses. I returned near noon. Mom still had not eaten. Waiting for a swallow test, ... which was going to happen when .. they got around to it. I was mad. I had the doctor rescind the test and fed her a yogurt by the time they cut me off by taking her to x-ray.
Social services rises again.
The SS lady wanted mom to have a swallow test. I had found that a swallow test requires no fasting prior to the test. If they wanted one, they could have one, but, SHE WOULD BE ALLOWED TO EAT. She later passed her swallow test "very well." They took mom to x-ray but stopped in front of the nurses station. As I talked with mom an orderly asked me to step away from the gurney. It seemed odd. (Naturally all the x-rays showed no abuse.)
But, weighing was more interesting this time. Down in emergency they subtract eight pounds for the weight of the sling. Up on the fourth... they never heard of such a thing, nor their supervisors. Mom gained TEN pounds by the end of her stay. TEN. Mom would tell us that they interrogated her each day. She was happy to give me a break. We had family there several times each day. We told her to tell the truth, but, not to talk if she did not want to talk.
SS makes one call, then doesn't even return our call.
Pulling out of the drive at home, taking my visiting nephew to the airport, couple days into mom's week long stay, the hospital called. No emergency, SS had questions. I said I'd call them back. Late for airport. I called back. Never heard from them again. There were security guards on our floor. I asked about mom's weight. The nurse kept asking to have a certain doctor paged. She couldn't give me information. She couldn't let anyone see the chart. I asked for a supervisor. Three security guards stood together about twenty feet away. The supervisor walked passed me right to the guards, greeted them, turned, and came right to me. Hmmmmm. Those guards... were there for ME! She couldn't give me information either. Over the next several days the security guards disappeared.
Later, I was to find that the doctors covering for mom's regular doctor, still on vacation, somehow had the idea that mom had been in hospital a couple of weeks ago (not six months ago), that she had lost eight pounds in a few weeks (curiously the weight of a sling), and that I had a part-time job and did not have time to take care of her well (No, I don't have a second job.). One of the several doctors in mom's regular doctor's building said mom suffered from severe malnutrition and had been in hospital a few weeks ago.
SS fights dirty.
Thursday at close of day my answering machine had a message from the hospital lawyer that we were to be due in court the next morning at 8:30 A.M. We met with the lawyer, my brother, his wife, and myself. They had pulled the bandages from mom's skin and took pictures of her naked bloody wounds. Well, all those slow healing wounds had been under doctors care for months. But, the report of "severe malnutrition" had been sworn by an SS professional to court under oath to conclude that our family did not act in my mother's best interest. Couldn't talk with the doctors involved, they were gone for the weekend, tried but did not manage to find a lawyer.
The hospital lawyer offered a deal. They'd let us become temporary guardian, provided we'd put mom in a nursing home (one of the two hospital related nursing homes). Perhaps I'd learn something they told me. Just to see if she'd gain weight under different conditions. .. They had a professional swearing that a doctor's statement was negative about my care, They had days to think this out. They could take mom, place her, not tell us where she'd be. I swallowed hard. I took the deal.
With guardian papers in hand, they still could not tell me mom's weights over the past several days. Just that she weighed ten pounds more than when she arrived.
Did SS swear to a lie?
I camped out at the doctor's office. One after another the doctors told me that their reports had nothing that indicated bad care. Instead they indicated surprise such a report was used as evidence against me and the family. That the weights were questionable, the last stay was months not weeks ago, and the idea that I had a part time job which I did not was met with some consternation, albeit quiet doctorly consternation. None remembered how they got that information. The chart, maybe the case worker, they weren't sure. Mom was moved that day over twenty miles from her family.
It took ten days in nursing to put my mom back into emergency, at a different hospital (the same "family" of hospitals). Her weight down six pounds, dehydrated, wouldn't eat, weak. The SS test had shown itself a miserable failure. My feeding her, vindicated.
SS's hospital lawyer capitulated. (The stupid twit.)
We brought in our own Gatorade and fed her putting our finger over the end of the straw. She started swallowing. We convinced the nurse to give her Parkinson's medication. Mom started to come back to life again. They still would not take three hours to feed her.
PEG tube.
She needed a PEG tube they told me. It was easy, simple, done as an outpatient, even better in the hospital. I thought to myself that if I ever became sick, no one would feed mom long enough, certainly not in hospital, let alone nursing home. It would also allow them to give her Parkinson's medications even if she were unable to swallow. (There are no intravenous Parkinson meds.) So, I agreed.
After the surgery, mom talked like she'd had about six beers. (I don't think she EVER had six beers -- at one time -- even when younger.) She drinks a little wine at church, that's been it for several years. I was perturbed that they wouldn't give her anything to eat by mouth, but, doctors! This hospital won an award avoiding aspiration after PEG tubes. They were being careful. We swabbed mom's mouth. She'd bite the sponge and suck every bit of moisture out before releasing the stick. They had tried to place her in nursing Friday, but decided to wait the weekend. By Sunday, she had sniffles, no oxygen, no monitors, and she we forced to sit up to avoid aspiration. At home she lies on her side in a fetal position, even to eat. Sunday night we left her at the end of visiting hours. I helped her blow her nose as best I could.
Here's what I think happened next.
Her throat was sore. Minor infection, inflammation from being dry and having tubes put in it for the operation. She developed sniffles. She was tired, her hemoglobin was low, her renal system worked hard for the first time in a week. Forced to sit up she could not hold up her head which might have shifted forward. Her jaw blocked by her chest, her nose blocked by her own nasal mucous, she stopped breathing and her mind, deprived of oxygen died. Around 4:30 A.M. she was fine, before 6:00 A.M. she had no respiration. No heartbeat. She did get CPR and a respirator machine.
They called, and my phone was out. My brother left at 5 A.M. for the airport from his house. Not that it mattered, by the time they called us the damage had been done.
But, they didn't let me know what damage had been done.
She had a respiratory failure and a cardiac event. This was explained to me that her heartbeat had gone below 60 beats per minute (called bradycardia) and her pulse-ox was under 90. Well, her heart is usually unusually slow. Her pulse-ox being low is also common since her fingers are bony, and her sensor falls off its best position. I thought the breathing machine was over doing a minor set of events. THAT IS JUST LOW HEARTBEAT COINCIDENTALLY WITH LOW PULSE-OX. Not stopped breathing and stopped heart.
I'm calling family saying that she'll be okay. Tried to find another doctor for an opinion since mom was breathing over the machine and needed to be taken off it. I even called and old girlfriend, now a local doctor. (her secretary indicated that it would have to be full pay. I guess it was taken in a wrong, but, somewhat funnily wrong way.) Then a nurse tells me what is in the chart and to notice that her eyes are fixed and dilated. And, I've been crying at strange moments ever since.
We gave mom the full 72 hours to see if she would come back to us. Her systems started shutting down. EEG was flat. No blood enters the brain. On Thursday with her minister and family we found she could no longer breath without the machine.
Twenty years stopped by the misstep and mal-steps of a single social worker.
But, great thanks to DUers for keeping me sane through the last years.
|
Printer-friendly format
Email this thread to a friend
Bookmark this thread
(1000+ posts)
Send PM |
Profile |
Ignore
