The other day I received a subscription link in an email to the latest TED talk. TED stands for Technology, Entertainment, Design. I find every lecture has something special and promotes thinking. This one was on end of life wishes and as my mother is at the end of her days, I found myself caught up in the lecture by Judy MacDonald Johnston and her Plan For A Good End of Life. You can watch it here:

According to Ms. Johnston, having a plan for the end of life, specifically naming what you want, what your final wishes are, makes the situation more peaceful and tolerable for you and those around you.

A few years ago when my mother had her first fall and we didn’t know if she would bounce back, I bought her burial plot. I was able to get one in the same cemetery as her parents not far from a shade tree. It was what I wanted, what I thought was right; I never asked her. She kept putting it off and putting it off. I didn’t want to wait until the “end” whenever that might be, and find myself scrambling to do what could have been planned for. In essence, I took on the responsibility because it made me feel better.

Here I am, however, scrambling while my mother is at the end of her days and I am trying my best to make them comfortable. When I began this blog series, it was after my mother had a fall, more than three years after the first one. I began the first post on February 21^st, and assumed the end was near. I used the blog to count the days, forward and back, to mark the past and tick off what was left of the future, not knowing, of course, how long it might be. Here I am forty-five posts later, three months later and my mother is still here, the eulogy from the first blog is in a holding pattern. She is trying her best to improve. She is forcing herself to walk with her walker but then gets exhausted after pushing herself down the long hallway of her floor. When I speak to her on the phone her voice quivers.

Here’s a conversation we had earlier:

“Hi, you’re home.”

“Yes, where would I be going?”

“It’s a holiday, I thought you went away.” She asked what I have been doing and I wanted to say “exhausting myself physically and mentally trying to plan the end of your life.” But I didn’t. But I did tell her about my research and the two visits I made yesterday to places where she might eventually find herself.

“I wanted to tell you that I decided I don’t want to move.” She said it and I knew it was inevitable. “I need the warm, it’s too cold up there.”

“Do you ever go out anymore?”

“On my terrace.”

The truth is my mother has become a recluse. She only leaves the apartment to walk the hallway. She has not left the building since she returned home at the beginning of March. She avoids people out of fear of getting sick. She is, still on Hospice care.

“Mother, let me explain something to you: in a matter of months you will run out of funds. You will end up in a nursing home in Florida which is not a good thing. Medicaid is frozen in your state, you can’t use it to stay where you are and if you could you will lose your apartment or end up sharing one. You really don’t have a choice.” These were direct words that I know she didn’t want to hear let alone think about. We had a peremptory discussion about logistics and facts and my observations of the previous day. Still many questions on my part and no certainties. All my mother wants is a decent meal and not having to share a space with anyone. But again it is more complicated and money is an issue.

And now to turn the focus in another direction: the aides. “They are all liars. Except Cynthia, she tells the truth. I threw the Hospice aide out; I told the Hospice aide if she can’t get here to bathe me when I want her, forget it. I was all dressed and she arrives at 10:30 and she expects me to get all undressed and then be bathed? Or she comes while I am eating my breakfast.”

Now there is something to be said about all that but there are other people on the earth who need attention and perhaps the aide couldn’t get there at any other time. “I have problems, ” she added. The girl who comes in and washes my clothes stuffs them in the drawer and wrinkles them. I told Naomi to take an iron and press my clothes or smooth them out with her hands; this is unacceptable. I have to have a talk with these people. Let her leave my clothes on the bed and I’ll put them away.”

“And  Naomi, was up all night, I could hear the television, I heard her on the phone all night, I had to tell her to be quiet. She denied she was on the phone.”

Now I am beginning to wonder what the story is: my mother usually prefers Naomi who, unlike Cynthia,”isn’t a pain in the ass.” “But,” she added, at least Cynthia tells the truth.”

My mother must have noticed Naomi in the other room or perhaps she was out and briefly and came in. In her best stage voice she said, “Here’s Naomi, she takes such good care of me. Naomi, my daughter wants to know how you are.” The phone was handed over.

“Hi, Naomi, how are you?”

I don’t remember what she said immediately after but I found myself repeating what I thought I heard as her voice cracked. “Your sister died today?”

“Yes, ma’am. She was not even forty, ma’am, she had breast cancer,”

“Did you tell my mother you just lost your sister?”

“No, ma’am, I didn’t want to tell her.”

“I’m so sorry, Naomi, I said, listening to her cry, “I know. I had breast cancer, too. I am alright now, but I understand.”

She had to hang up.

I wondered as I thought about my once youthful mother whose voice is now as unsteady as her gait, whether her demands for timely bathing and unwrinkled clothes were a compensation for the increasing wrinkling of her face; that she knows somewhere within that time is fleeting and being doled out more stingily each day. That perhaps there was no time for anyone but herself.

And I also wondered who made the end of life plans for Naomi’s  sister.

This series is linked: see “continued here.” Also, below the line there will be links for the previous post and the next.

The series starts here

continued here