My mother is dying

 Apologies, Deneen, for not posting on 9/11 this year. I was traveling, can't say more.

Mom, almost 93 yo, has Parkinson's, so many vertebral fractures that her lower ribs are in her pelvic girdle (she's now less than 4'5" tall), severe arthritis in her hands, increasing problems involving her mouth with food and speaking due to the Parkinson's, and a neurogenic bladder which requires an in-dwelling catheter. For years she has told me she was ready to die. There was no medication to be discontinued, her heart is strong, no diabetes, no cancer. In June she told her urologist how awful she felt, and he told her she could stop the Foley catheter changes. This would lead to urine retention, one of two things would happen: infection going to urosepsis or kidney failure. Chances are a combo of both. 

Her whole life she was a foodaholic, struggling with obesity, loving almost every food. Then, even before the fall that broke her pelvis, she just lost her appetite. She's forced herself to eat for years, mostly because of trouble with her BMs and knowing she needed fiber. So, giving up food isn't difficult for her, and that's what she's decided to do. Her last meal was lunch on October 9th. She was scheduled with her internist the next day to discuss going on hospice, she looked at me at dinnertime and said 'I don't want to eat.' I replied 'Then don't, you don't have to if you don't want to.' 

Outside of a couple of mini Reese's cups she hasn't eaten anything since, only drinks water to take meds, but she needs a lot of water as she's always struggled with swallowing pills. The intake hospice nurse said they wouldn't take out the Foley, because it would hasten death, my mother leaned forward and said 'That's what I want! Let me die!'. It kinda pissed me off, because I'd had a long conversation with this woman the previous week, and she'd never indicated a problem. Last Thursday the regular hospice nurse saw her, called me for the whole story and said she'd talk with her medical director. I pointed out the obvious: that without the advanced care of the catheter she would have died years ago.

Today the nurse said they would honor her wishes, but she expressed concern that if the catheter was removed and Mom had increasing discomfort that they might not be able to re-insert. Mom revealed for the first time that she has been having increasing back pain in bed (not surprising considering the state of her spine), and I pointed out that having an undrained full bladder pushing down on her spine would increase her pain. In the last week Mom has refused visitors, is sleeping more, her urine has concentrated with little fluid, her heart rate is up, her BP is down, and those are all signs of impending death. I reassured her that she was dying, and that, for now, the catheter should stay in place. If she doesn't continue to deteriorate then it can be re-visited next week. 

My Mom's comment today was 'Well, so far dying has been pretty easy.' She's getting Ativan, so her anxiety is less, also helping her with sleeping more. She's relieved to not have to get dressed, to not have to go through an elaborate routine to remove food from pockets in her mouth, to not have to be positive when she doesn't feel like it, to not have to use the CPAP, and to not have to eat. She is not in distress, is fairly comfortable, and I have every hope that she'll die peacefully, perhaps aided by a UTI. (In medicine urinary tract infections are referred to as an elderly person's best friend, because they get septic and die.)

Multiple people have commented at how striking it is to see people discussing death so openly, to be comfortable talking about the what-ifs and what would then happen. For Deneen's info: I've become an End of Life or Death Doula in the last year, because I think this is how death should be approached: open, honest, concentrating on what the dying person needs or wants. Everyone dies, it's the one guarantee in life, so why can't we deal with it? Talking about it does not make it happen, it's inevitable. Why won't people talk about death? 

She is a Baha'i, with very specific burial rituals. There is now a silk shroud (9 feet long, I don't ask why), a ring that says she is going back to God (doesn't he know already?) and essential rose oil in the apartment in preparation. I had called the funeral home where the plots are located last year after one of the bad falls, know everything is ready in that department. 

Last Monday we went through her ridiculous amount of jewelry, with much of it going to a sale benefitting the benevolent fund. We've gone through old pictures and letters, the magazines that she used to write for (Movie Life & Cosmopolitan before it was a fashion magazine), plus did her very outdated rolodex regarding who was now dead, who she hasn't heard from for a Christmas or two, who she wants to know now and who after she's gone. I've told her stories of patient's near death experiences, things that happened on calls that reinforce my belief in Spirit, which reassured her. 

The obvious question then becomes: how am I responding to this huge change in my life? Honestly, pretty unemotionally. Right now I'm in cope mode, and it's surprising how much there is to do, how many people to coordinate. She's in personal care with nursing staff to care for her, and since I don't work it makes it much easier on me. That said I've been staying up too late watching TV (addicted to old sit-coms!), going to bed at 2am, then up in less than 8 hours, over to her place before 1pm. Not getting much accomplished, but it's not helped by the staying up until ridiculous hours. My guess is that I'll stay in this mode until after she is buried and all that is left is clearing out the apartment. Maybe I'll break down before? I'm grateful that her Baha'i friends are being super helpful, my cousins are being very caring, and my Fellowship very supportive. 

It occurred to me that this is something that should be documented, so here we are. It won't be as polished as many previous posts, because it's going to be getting facts & emotions down while trying to get to bed at a more reasonable hour.

So, here we go, on a once in lifetime adventure. While most people go through the death of their parents everyone's experience is different. This will be mine.