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| New Year's Eve 2013 |
My mom had a lobectomy in order to remove a cancerous tumor from one of her lungs in 2009. The day she was supposed to go home, I arrived in her room to find the crisis team preparing to hustle her to ICU. She couldn't breathe. After spending nine days on a respirator, she suffered at least a half dozen other set backs. It seemed that she was dying. During the worst of it, I hoped that she would die. It seemed like the only relief from the suffering.
After a month she still was not well, but the hospital deemed it was time to release her to a skilled nursing facility. It was my job to find one. It wasn't that I didn't have the time. I'd been living in the hospital guest quarters for a month, writing my thesis, washing my three outfits out in the sink, microwaving weird convenience food in the microwave at three a.m. whenever anxiety kept me from sleeping. Finding a nursing home seemed easier than all that. There were WEBSITES AND RATINGS. I'd get her into some place good.
If you clicked on the link above that takes you to a New York Times article and a video, it's worth noting that I went to the same two websites portrayed in the video: U. S. News and World Report and Medicare.gov. Like the couple in the video, I had only a day or so to pull this off. The five-star place I wanted had a long waiting list, so I went with a four-star place near my brother's house since I lived across the county. I had no car to check out the facility in person, and my brother and his girlfriend had full-time jobs. But hey, U.S. News and World Report, right?
My mom and I arrived at the facility near dusk. The staff was too busy to provide any sort of cordial welcome. Things were chaotic Chez One Flew Over the Cuckoos Nest. The place stank and patients were calling out for various kinds of help. My mom and I had arrived by medical transport, so we were stuck. Later that evening when my brother arrived, we discussed just taking her to his place, but we didn't have prescriptions for her myriad of medications or any oxygen. We sat in her room with her for a while doing what we could to make her comfortable. We rang the call bell for her roommate who was crying uncontrollably. We sat, listening to the clack and hiss of her oxygen machine, going over our options. We tried to talk our not-at-all tech savvy mom into keeping one of our cellphones, but she refused. We sat for a while longer, marveling in horror at the name on her oxygen concentrator. Devil's Bliss, we thought it said. (It actually said Devilbiss, the name of the manufacturer) I couldn't stop wondering why anyone would name a piece of medical equipment Devil's Bliss. It seemed like a bad omen.
The next morning I went back at breakfast. My mother was having chest pains, and I insisted that the staff call 911. She was transported back to the hospital. After some days there, I had to find her another nursing home. Then I went to France on a writing fellowship. Things did not go particularly well at the new skilled nursing facility either. After my mom fell, and was subsequently tied (I'm sure there's a different word medical professionals use) to her bed, and overmedicated, my brother took her to his place. She was well cared for there by him and his girlfriend for three years. It will be three years this August that she's lived with me.
This past May when the man who loved me got sicker and sicker from his lung cancer, and my mom had been ill and had recently come home from the hospital, and I felt that I was not quite set up to care for two frail people at home, I found a nursing home for Dan. This time, I spent a day driving to all of the possible places near my house. I chose one. It seemed good, but it wasn't great. He was weak and disoriented and in grave danger of falling, so due to the fact that his daughter and his friend Linda had come to stay at my house, I slept at the nursing home. The night that I watched him writhe in pain for an hour, waiting for a dose of morphine, I called the hospice nurse at 4:00 in the morning and made arrangements to have him transported to my house. By the next afternoon, he was there.
I don't blame myself in a guilty sort of way for asking Dan to go the a nursing home for those few days. But I wish I hadn't done it. In my mom's case, well, she was really debilitated, but maybe she would have been better off going right to my brother's place too. Watch that video in the link above. Read the article. Self-reporting????
"Two of the three major criteria used to rate facilities — staffing levels and quality measures statistics — were reported by the homes and not audited by the federal government."
Shit.
So if you're faced with the need to consider a nursing home, wait, if you can, until Feb. 20.
9 comments:
There comes a time when your life is being, well, threatened.
This must be considered.
I will do everything in my power to take of my mom the way you take care of yours when the time comes... Not saying it is not very hard but...
Six years ago, following a successful,surgery, my mom's organs started to shut down. My dad stayed at the hospital, 24/7 for 101 days. When the doc suggested a nursing home, it was left to me to pick one. I did all the research, checked out the facilities, then cried all the way home after each visit. I was the one to break it to Mom that she'd have to move. She passed away at 1:30 a.m. on the day she was to be transferred. She was 73. I commend you for having your mom with you, and can't imagine how difficult it must be. All while grieving the loss of Dan!
Both my parents had Alzheimer's - they were divorced when I was 14. My father lived in a full service Board and Care and my mother in a nursing home. I went to visit every day. It took everything out of me and I found it to be a stressful burden. Neither of them had any quality of life. The places were as good as they could be. I could not have done better or have done what you are doing. You are a saint in my eyes. AND you obviously love your mom very much. I did not like my mother and I could not handle the physical needs of my father. Dan is a completely different story and I can see choosing to care for him in a heartbeat. I send you peace and strength. Sweet Jo
Oh you are so telling my story...which does continue, on the other side of this all..oxox
Both of my parents died six days after being told they would go into a nursing home. In my mother's case though, it was my sister who told my mum and I would not have let that happen. Sadly my dad was too difficult for me to take care of, and my children were little at the time.
For myself, I want to die before I need that much care. I know I don't have control over that but I don't want my children to find me a burden.
It's just difficult. Taking care of elderly, confused people is beyond difficult, not just for family members but for paid caregivers as well. We do our best.
It just fucking sucks. I'm sorry.
This passage is so hard.
It's so hard, Denise. Thinking of you.
Holy shit.
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