Mom's reason for doing VSED

 Note: Recurring problems with router, so getting on-line has been a struggle, increasing over the last few weeks and making everything more difficult. The router was replaced, multiple 're-sets' done remotely, still problems. Today the Xfinity guy checked the cable line and found that mice had eaten holes in several places. He replaced the cable and all seems good--yeah!

Brief overall update: Mom's apartment is completely cleared, including the pieces no charity would take. Found a junk dealer to take, they will rehab and sell, then donate any money to veterans organizations. I misplaced her wallet, making it harder to cancel things. Took her favorite ring in last week and was notified that it was ready, can't wait to wear as it's a special memory. Tomorrow everything will be officially over where she lived, as I turn in the keys. 

I had a major breakdown last Monday & Tuesday, mostly involving how she looked in those last days, the difficulty watching her wither away, how brave and committed she was, and my pain that she had to make the decision because there was no other choice, details following here. I'm better now, hadn't had a really good cry since she died, it's all been non-stop, life goes on and things need to be coped with that have nothing to do with her death. People are very understanding, because this is something that, in the natural order of things, everyone goes through at some point.

As I've been telling Mom's stories to people it's been a reminder of just how much things had changed in the last five and a half years since her major fall. She was doing great until May 2017, at 87 yo, when she had already walked the equivalent of several blocks over to the Acme, speeding along with her walker, and was back in her building. She took 2 steps away from the walker to dispose of junk mail and fell, fracturing her pelvis in three places. Along with the Parkinson's and the multitude of vertebral fractures it left her bladder incapable of contracting, resulting in the in-dwelling urine catheter. Her hand arthritis had been worsening for years, she was unable to flip the lever to empty the urine bag on her own, which lead to having to move to Personal Care (less nursing staff than Assisted Living). I had already found my house, was waiting to make settlement, when she fell. That meant that even though I was closer she was no longer as able, or willing, to leave her building. There were many issues when staff didn't close her bag fully, leading to her leaking urine wherever she left, which was humiliating for her, not to mention the need to change pants and shoes. She probably would have begun slowing down, but the issues with the catheter just seemed to deflate her, she aged so quickly. She lost more and more fine motor function in her hands, she could no longer type, meaning she could no longer write, her greatest passion. 

More vertebrae collapsed, to the point that her lower ribs were in her pelvis, which necessitated a fentanyl patch for pain control. It is probable that the narcotic exacerbated her dementia, but it was a needed trade-off to control the pain. Even before the pandemic she was reluctant to leave her building, wanting the comfort of having everything she needed right there, and the embarrassment of leaking urine bags. I offered to drive her around after medical appointments, since she was already in the car, plus the one upside of the urine bag was not needing a bathroom repeatedly. But she would just want to go home, too uncomfortable to enjoy the spring green of trees budding, summer lushness or autumn's bursts of colors, all of which she had always loved. 

As has been noted by many people regarding their elders, the pandemic definitely worsened things for her. She noted that the need for the staff to empty her Foley bag several times a day at least gave her interaction with other humans, but she deteriorated mentally. Then, last year, she had two major falls. One was while getting into bed, she just didn't get her butt over far enough and fell, breaking her wrist. That meant she couldn't use her rollator, on which she was completely dependent. It was with amazement that everyone watched her work hard in PT to recover enough to return to her apartment. Then, less than six months later, she fell in the parking lot, where she'd been walking for exercise and to enjoy the sun. She fell so hard that she broke her right knee-cap and took a major shot to her head. While the CT was negative everyone agreed that she did not return to her previous mental functioning. 

By the time the waning pandemic allowed meetings she was unable to lead the inter-faith devotionals, which had been her last remaining joy, between decreasing mental abilities and profound fatigue. She complained regularly, and understandably, about being unable to do anything because she spent all her time just doing the basics. Eating was tortuous, she had stopped enjoying food even before the 2017 fall, and as the Parkinson's progressed it affected her mouth and tongue movements. Her swallowing was fine, but food would get caught in her cheeks and teeth because her tongue no longer was able to sweep things away, which meant putting her fingers in her mouth to re-position the food so she could swallow. For the past year she had increasing issues with rectal prolapse from the neurological deterioration, had to repeatedly push her rectal tissue inside, multiple times a day. And then in the past several months her speech became more and more difficult, a result of the Parkinson's. She couldn't even get Alexa to work, because her voice was so soft and indistinct that it wouldn't hear or understand her commands. Hanging over her was the knowledge that things could get worse, that another fall could break ribs, making every second pain-filled. 

Why am I listing all of these issues, even ones most people won't discuss since they involve elimination? Because this is the reality of aging in America. Her life became intolerable, her body just too deteriorated and her spirit fractured, plus she knew that it would only get worse. 

Repeatedly, she asked me how she could die, but there was no 'easy' answer. There was no chemo to stop, no insulin to take too much of, no heart problems, no dialysis. There was nothing she could do to die. All she could do was struggle through every minute of every day, able to do less and less, sleeping more and more, not taking pleasure in anything. She kept her sense of humor, even as the dementia stole her memories, but her anxiousness just went through the roof. She's always been on the anxious side, but it just got worse and worse. With the narcotic patch on for the pain and her already a major fall risk there wasn't anything to prescribe that wouldn't potentially cause more falls. We tried some of the non-benzodiazepines to no avail. Her anxiety affected every moment of her day, and it was amazing what she could find about which to be anxious, which included which tech was on, who would do her shower, if they were 5 minutes late, it they would come to empty her urine bag..... It was torture. There was no pleasure in anything, only anxiety about what the next day or next week would bring as she continued to deteriorate. 

In 10 states & DC legislation has been passed to allow for MAiD: Medical Aid in Dying. This is NOT assisted suicide, this is not Dr. Kevorkian, this is different. There are all sorts of controls in place, including that the person be within 6 months of death, be cogent, and be able to swallow pills on their own with no assistance. As you might have guessed, Pennsylvania is not one of the states where this is legal. So, for someone in Mom's situation, there is no choice. Short of a desperate measure of suicide there is no alternative, except for VSED: Voluntary Stoppage of Eating & Drinking. 

I'd mentioned this to Mom a few years ago, but she hadn't gotten to that point. Then the urologist told her that she could stop the catheter changes. This would cause urinary retention, leading to infection and kidney failure, she would die of urosepsis. He mentioned it in February and again in June during urgent visits regarding her catheter. We brought it up to her internist, part of Mom's concern was if it was suicide, which is against her Baha'i religion. The internist faced her and asked 'Do you remember Pope John Paul 2? Do you remember that he had Parkinson's? He got to a point of suffering that he stopped all treatments, and then stopped eating & drinking. And if the Pope did it, it can't be a sin.' Much to my surprise for a non-Catholic this made a huge impact on her, and she started considering it more and more. 

After several weeks Mom announced to me that she wanted to stop all treatment and go on hospice. She had found a way to look at it that worked for her 'I want to stop everything that is keeping me alive.' This might be considered dancing on the edge, but I think she was really on to something--not active, but a passive approach. 

There's more to say, but it's almost time for bed, since trying to get up earlier to drive to my cousin's for  Thanksgiving. I don't know when I'll be able to post again, and I don't know if this is ever going to be read by anyone, or help anyone. But it enables me to phrase things in black and white that will help when trying to verbalize in other situations. 

If someone has something nasty or unpleasant to say, please don't bother posting anything. I'm writing this for me, and in hopes it will help someone. If it doesn't resonate with you that's fine, just go read something else.