Mom is dying, 3rd post

 She's a little worse each day, more fragile looking. Another couple of her faith came over, the man said 'You look great!', which she doesn't. She looks fragile and old. It annoys me when people do that, lie to the person or themselves. Why not just 'It's so good to see you!'. Making a false statement about an ill person's appearance is so annoying.  Are you saying you don't believe they are sick or dying? Are you trying to make it less true? Why are you too scared to speak the truth?

I don't understand not talking about death, know that's in an earlier post. It's the one thing that's guaranteed. Talking about it doesn't make it happen. And if someone knows that they're dying why do you have to lie to them? To pretend it isn't happening? Why can't people accept the process, and embrace it for the transition it is, stepping into the unknown? One of my favorite quotes is from Anne Morrow Lindburgh: We are not snuffed out at death, merely absorbed into a larger flame. I love that image, of joining a larger Spirit world. 

Mom's memory has been going for several years. About 4-5 years ago she announced to me, carefully forming the words 'I believe I have mild cognitive impairment.' I assured her that if she could remember that phrase that it really was mild. It's spotty. A lot of people remember their pasts, their childhoods, but not recent events. She hasn't remembered the past for decades, now it's even worse. 

She doesn't remember what people have said, or only remembers fragments and then tries to put the pieces together, never succeeding. It's like trying to finish a puzzle where many of the pieces are missing. So it's important that I be there for conversations, to remind her when she can't remember or is confused. She remains very anxious, which is just her. She's always been anxious, as was her mother. Now it's escalating. She's on a tiny dose of Ativan twice a day, it was 0.5 mg, but she had problems sleeping and was too out of it, so it dropped to 0.25 twice a day. I wish she'd take it more often, which she can, because it's hard to watch her so confused, you can feel how scared she is of whatever she's anxious about, which can be anything. Who will lead her service? (Bahais don't have clergy, so it's other members of the faith.) What will the weather be like? Does the funeral home know how to wrap the shroud? Why didn't I wear the matching ring with her necklace? (Seriously! That was yesterday.)

Not getting much done at home except for the essentials, as I type a load of laundry is finishing, bed was changed and paid some bills. Did have hair appt today, pushed back from last week. But I'm tired. It's amazing how much there is to be coordinated and managed, it's unfathomable to me how people work when they are the primary care provider for a loved one. And so many things going on reinforce the knowledge of how valuable a Death/EoL Doula can be in the process.

It's now approaching 2 weeks since she last ate, although there were a few Boosts after that, and she's still enjoying a mini Reese's cup every day. She sleeps more and more, her breathing becoming more ragged, although not the end-of-life breathing. She is so frail, and everything is an effort. Most of the time her mouth is open when she's sleeping, so she wakes feeling very dried out. When the Sjogren's started, before all the drugs, I found a mouth moistening gel to help. Even picking that up, flipping the cap, squirting into her mouth, pushing the cap down and then putting it on the table next to her is an agonizingly slow process. She's still relatively pain-free, which is a huge blessing. The Foley (urinary catheter) was changed today, and there were some problems. She gave a big smile when I told her it was the last time she'd have to tolerate the procedure. She takes pleasure in this relief, of what she won't have to do anymore. She just wants to die, to be out of this body that no longer functions or serves her. I

So many times I'd see patients on ventilators with 4-5 pressor drugs running, tubes everywhere feeding them, breathing, draining. And I'd ask the family if they wanted to back off on such aggressive treatment when there was no hope. So often they'd smile and say, 'Oh, God will decide when it's their time.', and I'd think 'God already made the decision, you're the one holding it up.' Why do people think that God will punish them for dying a few hours or days earlier, rather than be tortured into the grave? Who wants to worship a God who would want you to suffer when you are dying? Suffering during life is, I certainly hope, a growing/learning process. But at the end? Why?

The last couple days I've been closer to breaking down, and have felt more fragile emotionally, which everyone assures me is normal. Even being close to 60yo you only lose your mother once. My mother is a wonderful person, but she has never been very maternal, and like many mother-daughter relationships ours has been fraught with difficulty. With no false modesty I can say I've been terrific, handling everything, anticipating problems, finding solutions. I will have no regrets at the end, and she is more appreciative of me than she has ever been before.

I decided to accept 'Aunt' Beth's offer to come and stay with me for as long as necessary. Long time readers will remember Beth, she was with me through all the surgeries and stayed with me afterwards. Technically, she's my father's first cousin, and therefore my 1rst cousin once removed, but 'aunt' is appropriate, and also gives the generational recognition. Her son, my cousin Mark, will come with her, and he will be a huge help as well. I'm struggling with sharing my space, but know this is the time, more than any other since my surgery, that I'll need the support, hard as that is to admit. As long as there are things to do the emotions are at bay, so most of tonight was spent getting ready for long term guests who will need drawers & closet space. 

It's still an unknown, of course, how long she will last like this. The biggest change happened a week after she stopped eating, getting a little worse Monday, Tuesday & Weds, but today was very similar to yesterday. Will she be worse tomorrow? Will she plateau for several days? She definitely has the 'inward turning' , a commonality amongst the dying. She actually asked her visitors today to leave, saying she wanted to sleep, and it was good she was able to say that. She loves hearing memories of her that are positive, but it's too much effort to converse for long. 

So, I'm going to stop now, because I want some time on the couch with Spice. It will be the last time it will be 'normal' here at home before my mother dies. I've already started doing that, thinking about what it will be like. It's easier when someone has been failing for years, but it's amazing that I feel so surprised about the pending loss. I guess it's just more.......real.

Not sure any of this has any meaning to anyone else......