The year anniversary of my mother's death

Today is the one year anniversary of my mother's death, and if you have been reading this blog for any period of time you know that I'm a big one for anniversaries. So here are my current thoughts on this anniversary, which is also a review of what lead up to Mom's death. 

My mother was 92 yo. In her long life she had been an editor, a counselor at a weight reduction place, and then an area manager for a group that brought over foreign exchange students. And a writer, always a writer. Intelligent, well informed, and very erudite. By the time she was in her 70s, though, she seemed older. Always short, she started shrinking more and more, that accelerated in her 80s as more and more vertebra collapsed, until she was down to only 4’5”. The Parkinson’s hit when she was in her mid-80s. The symptoms began as relatively mild but, as is usual, it affected her balance. In April 2017, at  87 yo, she fell, taking only a couple steps away from her walker to dispose of junk mail, and broke her pelvis in several places. That was when things really went downhill. In a lot of ways the day she fell was the day my mother died.

 The pelvic fractures along with all her other medical issues lead to her bladder being non-functioning, so she needed an indwelling bladder catheter. There is a huge psychological toll when you can no longer toilet yourself, it was completely understandable that she became more and more depressed. Her arthritis meant she couldn’t empty the bag herself, she had to move to the assisted living floor, surrounded by people who weren’t nearly as sharp as she still was. She was excited at one dinner when she had a spirited conversation with another resident in their dining room, but her hopes of a mental equal were dashed the following night when the woman sat across from her and proceeded to repeat everything she had said the night before.

 Over the next few years Mom asked me repeatedly when she would die, she didn’t want to be in this body. Things got worse during the pandemic, when she was restricted to her room for months at a time. She told me she had never thought she would be grateful for the urine bag which needed to be emptied several times a day, but it meant face-to-face time with staff members. Once the pandemic was over it was obvious that it had taken it’s toll, yet her body continued to function. She went out of her way to find something positive or funny to have as conversation every day, but it just got harder and harder. More and more she said to me ‘How can I die? What can I do to die?’ The only option she had was to stop fluids & food, something called VSED: voluntary stoppage of eating and drinking. She said she wasn’t ready.

 Then the Parkinson’s started affecting her mouth and tongue. She had to move food with her hands to get it in the right place in her mouth so she could swallow. It was humiliating, she took to eating in her apartment rather than in the dining room, too embarrassed to be seen putting her fingers in her mouth over and over. Then, last summer, it affected her speech, she couldn’t form words and her voice became so soft and indistinct that even the Alexa echo dot couldn’t respond. For her that was the final straw. With the blessing of her internist she went on hospice, and stopped eating. She was happier than I’d seen her in years.

In 11 other states in the country there is something called Medical Aid in Dying, MAiD. It’s designed for those who have cancer or other fatal diseases, it means you can go to your doctor and, after jumping through several hoops, get a prescription to end your life. You can have control over when you die, you can spare yourself the agony of continuing to deteriorate, be in pain, unable to function. But Pennsylvania won’t pass the legislation, so someone like my mother, suffering for years, knowing everything would get worse, has no other choice but to starve themselves. This is clearly a massive dichotomy in a country that supposedly honors each person’s right to happiness.

 The first 10 days after she stopped eating she was more content, more relaxed. Word spread in her community, where she’d lived for 20 years, and friends stopped by to say goodbye. Several of them told her how much she had meant to them, how things she wrote gave them joy, the biographies of new residents that she wrote made their moving in easier. I was with her every day, witnessed this, and it was beautiful, sort of a living funeral, where the person gets to hear all the wonderful things people say instead of at a memorial when it no longer matters to them.

 Mom was a Baha’I, a fairly small religion with a lot of rules around burial. I’d already bought a cemetery plot she approved of, and she watched with pleasure as the items required accumulated in her room: the white silk shroud to be buried in, the rose oil, the ring that is placed on the deceased that says in Arabic that you are going back to God. Friends from her religion came and prayed with her, as I sat back respectfully observing.

She’d stopped any food intake, but the day after she stopped eating I offered her some chocolate, and her face lit up with a child’s delight. I assured her that it wouldn’t impact the dying process, and she seemed to like the secret cheating that only the two of us knew about. I brought her brownies and candy, she’d only eat a little, but would always smile broadly and her face would brighten as she savored the taste.

 Ten days without food, but she was drinking a lot of fluid. She’d asked if she could stop the ‘damn CPAP’ since she wanted to die, but without the humidified air she would wake with her mouth dry and uncomfortable. She was definitely fading, but it wasn’t fast enough for her. When we were alone that night she struggled to sit up a bit more, looked me directly in the eyes and said ‘How can I die faster?’. She knew I’d be honest with her, that was our agreement. I looked back at her and said ‘I will never deprive you of anything you ask for, so know that, before I tell you how you can speed the process: you will die more quickly if you stop drinking anything other than a small amount of fluid with your pills.’ She nodded her comprehension, and just said simply ‘ok’. And that was it. She stopped drinking fluids cold turkey. I admired her bravery, something she’d never displayed much of before, but she had made a decision that she was going to die, and damnit, she was going to do it as quickly as possible.

 She faded more quickly then, and I stopped giving her chocolate, because her mouth was too dry to safely swallow anymore. Five days later she was sleeping more, barely talking. The hospice nurse came on Monday and said she thought Mom would die by the end of the week, when I repeated this to her she responded “Good’, and that was pretty much the last she spoke.

 It still took another five days, but she was unconscious by then. She developed bed sores incredibly quickly, and I begged for the morphine, but it wasn’t given as often as it should have been. Her eyes sank in, her gums receded, her body shriveled down more and more until she no longer looked like herself. And all I could think of was how unfair it was that this was her only option, this difficult choice. At least by that time she wasn’t suffering, it was harder on me watching. I tamped down my anger at a medical system that forces this horrible way of dying on our elderly and sick.

 In the prior weeks she had talked excitedly about people she would see on the other side, in the Baha’I belief of heaven. After she became unconscious I continued to talk to her, to remind her of all those people. When you reach almost 93 yo most of your friends & relatives are gone, so I told her that there would be quite a crowd to greet her. I didn’t talk incessantly, but always spoke as if she could hear and understand me.

 On Saturday I knew it was close, she was breathing about 40 times a minute, her core was very hot but her arms and feet, drawn up in the fetal position, were ice cold. Her heart rate was about 120, the fluttering in her neck easy to see with her dehydrated body so shrunken. Mom really only wanted me with her, except for one friend for a few hours in the mornings before my arrival. I’d been pushing myself constantly for over three weeks, had taken up the offer of my cousins to support me by staying at my house. Beth looked at me that morning and said in her typical blunt fashion ‘You look horrible. You can’t keep this up, you’re going to get sick. I’m coming over at 2:00 and you’re coming home to rest. I’ll stay with her, you have to have a break.’ 

At about 1:00 I said to my unconscious mother ‘Mom, if you want to die with it just being me with you then you’ll have to do it soon, because Beth will be over in about an hour. So just know if you want only me with you it needs to be soon.’  Less than 20 minutes later her breathing dramatically changed, I began reading her the Baha’I prayer she wanted said over her, it was only the second time through reading the piece when the pulsing in her neck stopped, and she was gone.

I sat there with her for 10 minutes, not calling anyone, because you never have that time again, those moments right after a person leaves this world, and regardless of your beliefs in a spirit or an afterlife, that time is sacred. So I just sat with her body, and honored that transition, glad that she had gotten her wish and was no longer suffering. I hope there was a big happy party waiting for her, and everything that she wanted from heaven.

 A nice woman from the hospice bereavement program called me today to check on how I was doing. She told me how difficult the first year always was, and with the holidays coming up it would be normal for the grief to be worse. But it isn’t, because my Mom changed from who she was years ago, and I’d already grieved that loss. My only emotion a year later is a quiet joy that I was able to advocate for her to give her what she wanted, and know she’s at peace. And that deserves celebrating, not grief. I’m going to quietly honor her passing with happiness, because she shed the broken, worn out painful physical body that ruined her last years.

 I don’t believe in a Christian heaven, with pearly gates and streets of gold, but I ardently believe in a spirit that continues on after this world. Anne Morrow Lindburgh said ‘We are not snuffed out at death, but absorbed into a larger flame.’  My comforting image of Mom is of pure spirit, released, able to swoop and swoosh up & down without limits, communicate easily with other spirits, be enveloped by pure love from that which is greater than ourselves, which some people call God. No longer pinned down in a limiting body she is joyful and happy and no longer in any pain or discomfort.

 Party on Mom, I just know you’re having a wonderful time.