The past week with Mom
Last Saturday we picked up Nana (90) at the home where she lives (in another town), and took her to Buffalo to visit mom (her daughter).
The visit went well. Mom woke up enough to have some good moments with Nana.
We then brought Nana back home with us to Rochester. Our plan was for her to stay with us overnight, then to go to Mass on Sunday.
But we found a call from my father on the phone. Seems the doctors had scheduled a meeting on Sunday morning at 11 a.m. No one from the hospital had bothered to call me to ask if that was okay or even to tell me about it, nor did they bother to tell me while I was the hospital on Saturday afternoon.
So Mass plans got cancelled
I went to the Sunday morning meeting. Dad clung to the idea of giving her a tracheostomy if her lungs gave out after taking her off the tube respirator on Monday. We tried to convince Dad that Mom had almost no chance of recovery, and that she would have little quality of life if she had the tracheostomy. He clung to his delusions that they would still return home and all would be as before.
We also agreed to return on Monday to meet with the hospital's ethics committee.
When we went in the room, Mom was in and out. She'd respond to a question clearly, then start asking about people or things that made no sense.
Sometimes she just wrote numbers or gibberish.
She also wadded up note paper and threw a couple of wads at Dad.
The tube came out Monday. Mom didn't have to go back on the respirator tube, but needed a mask - an in-between step. She was still not lucid enough to communicate clearly.
After work, I drove back to Buffalo, picking up Dad at the home where he is staying (wheel-chair-bound stroke patient).
At the ethics committee meeting, we finally got him to recognize that she would not be coming home, and her chances of recovery were almost non existent. The doctors pointed out that given her condition, if we did give her a tracheostomy, she would be unable to communicate with us intellibly, would probably be sedated most of the time, would be confined to an institution, and that would likely only live a few months at most. (Her lungs are so damaged that on their own they only work at about 12 percent. Any lower, and even a respirator won't work.)
He finally said that if the mask system did not work and her lungs gave out, let her go.
Meanwhile, he started with all these plans to get power of attorney. We pointed out that Mom was not lucid enough to sign the documents, but he was adamant, saying there may be a window of lucidity.
In case you wonder, Mom's estate (separate from Dad's) is in six figures.
Dad wants that money.
He knows she cut me out of her will, but he doesn't know who she has chosen instead to inherit.
It might not be him.
(FYI: She had been planning to leave him, but then he had his stroke back in '97. She stuck with him. I remember she told me at the time she would feel guilty if she left him, and she was concerned what people would think. But since then she's taken every opportunity to tell me her feelings about him.)
By the way, on the way to the Buffalo meeting on Monday, my car lost power and conked out repeatedly. I'd been having intermittant problems with it on lengthy drives (around town it's fine), but my repair shop couldn't figure out what was causing it. Maybe a coil that's overheating? They basically said they probably wouldn't be able to figure it out until the malfunctioning part actually fully gave out.
It's not fun being on the side of the NY State Truway in a malfunctioning car with a man in a wheelchair as trucks roar by at 75 mph.
When it conks out, I have to pull over, turn off the engine (if it hasn't already turned off on its own), sit for a minute or two, then restart it and go until it conks out again.
Tuesday, I returned to Buffalo with my youngest daughter, Emily, who had not seen her grandmother in a couple of years. The car conked out eight or nine times.
I was glad that Emily got to see her. She bought Mom a small stuffed cat. Mom cuddled with it and seemed happy to see Emily. A good moment.
After our adventures on Monday, Dad had said I could use my mother's new car - which had all of 1,400 miles on it and had been sitting in their garage.
I've put more than 2,000 miles on my car in the last two weeks alone due to all the back and forth to Buffalo and other communities where my family members live.
On Wednesday, we drove to the town where my parents live and got Mom's car. I will be putting my car into the dealer to see if they can figure out what's wrong with it.
On Friday, Dad and I went back to Bufflao in Mom's car. He asked about the mileage. He was nervous that if I put too many miles on Mom's car he might get less for it when he sells it should she die.
At the hospital, we learned Mom has been pulling out tubes, tugging at her mask, refusing to cooperate. Because she is not rational, they can't get through to her to explain what they are trying to do.
Further, her feeding tube clogged, but they couldn't get her to cooperate to put in a new one, and they can't give her a sedative because that might cause her lungs to give out.
So she hasn't been getting food since Tuesday.
Meanwhile, she keeps writing notes about wanting to go home and to go shopping. She does not respond to questions.
I told the doctor that we spoke to on Friday that while I could accept not using extraordinary means to keep her alive, I objected strongly to not feeding her.
The doctor said she is getting enough nutrition to sustain her through the sugar water in her iv, but they will try to get a feeding tube in on Tuesday.
After all, it's a three-day weekend, and there would be no one around to do it until then.
But the doctor also said she didn't know if Mom would last the weekend.
During the Friday visit, Mom recognized us, but barely interacted with us. She did manage to ask for water, which we gave her by spoon. She also asked in writing about wanting to go home and to go shopping. She also wrote some gibberish. Her energy level was definitely down. She kept nodding off. She finally fell asleep.
On the way home, Dad asked me to drive to his town on Mondy to pick up the power of attorney papers the lawyer was preparing. I reiterated that Mom was not lucid enough to sign. He said there still might be a chance she could.
I suggested that instead he get his own health care proxy and directives in order so that we don't face a similar situation with him some day.
He said he would. But he still wanted me to get the papers from the lawyer.
It is now Saturday. I am at my weekend job. No calls so far.
When I get home, I may turn the ringer off on the phone and take a nap.
The visit went well. Mom woke up enough to have some good moments with Nana.
We then brought Nana back home with us to Rochester. Our plan was for her to stay with us overnight, then to go to Mass on Sunday.
But we found a call from my father on the phone. Seems the doctors had scheduled a meeting on Sunday morning at 11 a.m. No one from the hospital had bothered to call me to ask if that was okay or even to tell me about it, nor did they bother to tell me while I was the hospital on Saturday afternoon.
So Mass plans got cancelled
I went to the Sunday morning meeting. Dad clung to the idea of giving her a tracheostomy if her lungs gave out after taking her off the tube respirator on Monday. We tried to convince Dad that Mom had almost no chance of recovery, and that she would have little quality of life if she had the tracheostomy. He clung to his delusions that they would still return home and all would be as before.
We also agreed to return on Monday to meet with the hospital's ethics committee.
When we went in the room, Mom was in and out. She'd respond to a question clearly, then start asking about people or things that made no sense.
Sometimes she just wrote numbers or gibberish.
She also wadded up note paper and threw a couple of wads at Dad.
The tube came out Monday. Mom didn't have to go back on the respirator tube, but needed a mask - an in-between step. She was still not lucid enough to communicate clearly.
After work, I drove back to Buffalo, picking up Dad at the home where he is staying (wheel-chair-bound stroke patient).
At the ethics committee meeting, we finally got him to recognize that she would not be coming home, and her chances of recovery were almost non existent. The doctors pointed out that given her condition, if we did give her a tracheostomy, she would be unable to communicate with us intellibly, would probably be sedated most of the time, would be confined to an institution, and that would likely only live a few months at most. (Her lungs are so damaged that on their own they only work at about 12 percent. Any lower, and even a respirator won't work.)
He finally said that if the mask system did not work and her lungs gave out, let her go.
Meanwhile, he started with all these plans to get power of attorney. We pointed out that Mom was not lucid enough to sign the documents, but he was adamant, saying there may be a window of lucidity.
In case you wonder, Mom's estate (separate from Dad's) is in six figures.
Dad wants that money.
He knows she cut me out of her will, but he doesn't know who she has chosen instead to inherit.
It might not be him.
(FYI: She had been planning to leave him, but then he had his stroke back in '97. She stuck with him. I remember she told me at the time she would feel guilty if she left him, and she was concerned what people would think. But since then she's taken every opportunity to tell me her feelings about him.)
By the way, on the way to the Buffalo meeting on Monday, my car lost power and conked out repeatedly. I'd been having intermittant problems with it on lengthy drives (around town it's fine), but my repair shop couldn't figure out what was causing it. Maybe a coil that's overheating? They basically said they probably wouldn't be able to figure it out until the malfunctioning part actually fully gave out.
It's not fun being on the side of the NY State Truway in a malfunctioning car with a man in a wheelchair as trucks roar by at 75 mph.
When it conks out, I have to pull over, turn off the engine (if it hasn't already turned off on its own), sit for a minute or two, then restart it and go until it conks out again.
Tuesday, I returned to Buffalo with my youngest daughter, Emily, who had not seen her grandmother in a couple of years. The car conked out eight or nine times.
I was glad that Emily got to see her. She bought Mom a small stuffed cat. Mom cuddled with it and seemed happy to see Emily. A good moment.
After our adventures on Monday, Dad had said I could use my mother's new car - which had all of 1,400 miles on it and had been sitting in their garage.
I've put more than 2,000 miles on my car in the last two weeks alone due to all the back and forth to Buffalo and other communities where my family members live.
On Wednesday, we drove to the town where my parents live and got Mom's car. I will be putting my car into the dealer to see if they can figure out what's wrong with it.
On Friday, Dad and I went back to Bufflao in Mom's car. He asked about the mileage. He was nervous that if I put too many miles on Mom's car he might get less for it when he sells it should she die.
At the hospital, we learned Mom has been pulling out tubes, tugging at her mask, refusing to cooperate. Because she is not rational, they can't get through to her to explain what they are trying to do.
Further, her feeding tube clogged, but they couldn't get her to cooperate to put in a new one, and they can't give her a sedative because that might cause her lungs to give out.
So she hasn't been getting food since Tuesday.
Meanwhile, she keeps writing notes about wanting to go home and to go shopping. She does not respond to questions.
I told the doctor that we spoke to on Friday that while I could accept not using extraordinary means to keep her alive, I objected strongly to not feeding her.
The doctor said she is getting enough nutrition to sustain her through the sugar water in her iv, but they will try to get a feeding tube in on Tuesday.
After all, it's a three-day weekend, and there would be no one around to do it until then.
But the doctor also said she didn't know if Mom would last the weekend.
During the Friday visit, Mom recognized us, but barely interacted with us. She did manage to ask for water, which we gave her by spoon. She also asked in writing about wanting to go home and to go shopping. She also wrote some gibberish. Her energy level was definitely down. She kept nodding off. She finally fell asleep.
On the way home, Dad asked me to drive to his town on Mondy to pick up the power of attorney papers the lawyer was preparing. I reiterated that Mom was not lucid enough to sign. He said there still might be a chance she could.
I suggested that instead he get his own health care proxy and directives in order so that we don't face a similar situation with him some day.
He said he would. But he still wanted me to get the papers from the lawyer.
It is now Saturday. I am at my weekend job. No calls so far.
When I get home, I may turn the ringer off on the phone and take a nap.
posted by A Secular Franciscan | 10:07 AM
3 Comments:
oh, lee - i am sorry you are having to endure this, i am sure it has all been a struggle, even down to the car issues. i will light a candle for you and keep you and your family in my thoughts and prayers.
What a terrible situation all round. At least when this happened with my husband's dad everyone was on the same page and not having to go through the things that you are over the power of attorney, etc.
My heart goes out to you and your family ... and my prayers are rising heavenward.
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