Saturday, July 11, 2015

Waiting 4

My mother passed away on July 4th, 2015 at the age of 88. I spent the last two and a half weeks of her life with her, much of it in hospice waiting for her to pass. It was the first time I had been that close to the dying process and I am grateful I had that time with her. It was a very strange experience, often fascinating, sometimes surreal. (4 of 5 posts)

Today was a peaceful day.  Mom's breathing is calmer, more steady.  She still can speak, sometimes garbled, sometimes quite clear.  Sometimes to us and sometimes to someone we can't see.  My sister and niece both thought it was my late father.  I asked why and they said it seemed as if she was answering requests.  Yep, that would be him.

Today is apparently not the day. Her breathing will get more ragged first, long pauses in between. Part of me wants this to end. We've said our goodbyes, it seems like time. The other part of me selfishly wants to be able to reach out and take her hand. She's not even the abridged version of her self, the Alzheimer's version, but there is comfort in physical presence and touch. Soon I won't have that. There is a lot of back and forth, ragged breathing suddenly calmed. It is not a steady deterioration. When she seems to improve I entertain a fantasy of running the film in reverse. All the events that led to her lying in this bed would suddenly run backwards. While I'm indulging in magical thinking I'll take her back to her pre-Alzheimer days, back to book discussions, travels and wise advice.

I take a break and go outside to absorb some sunshine, too many hours in a dark room and too much magical thinking. On the way out I pass the chapel. A half circle of people kneel on the ground. Hmm, Buddhists? Muslims? How ecumenical. We are Jewish in a Lutheran facility, so why not Buddhists or Muslims too? Then they partially rise and bow forward three times, hands pushing towards the ground below. It is only then that I notice the dummies below and realize it is a CPR class. 

I sit in the warm sun basking in the world of the living. I call my friend Dora who is in her 90s. We get together or talk every week and I've been away for a week beyond what I'd planned. Dora is a second mom to me and it is comforting to speak with her. When I didn't call, she worried that something had gone wrong. "You know I'll go eventually too," she says. "Yeah", I reply, "and I don't like that one bit."

Another day and my mother's breath still seems even. She doesn't eat. I can't remember when she last had anything but water. I am glad we didn't have to make a decision to pull a plug. Our choice was a relatively easy one. There was no viable choice given her age. It will be a peaceful death.   Just a limbo of waiting.
I have spent more time with family this past week than I have since we were children. We are different people. Sometimes the differences chaff. A spark flies and we quench it. Our relationship with each other will change without our mother at the core. I got to know my sister in a different way as we cared for my mother's needs. We shared a room as children, but I feel as if I only recently got to know her well. Will we drift back to our separate worlds once again? I watch my niece with her grandmother and am touched. She is so good with her, at ease in this strange situation. My other niece uses the opportunity to explain death to her four year old who had a loving relationship with his great-Gaya.

One of our favorite nurses just came in. She puts her arm around Mom, cradling her. She speaks softly into her ear. Then she turns to my sister and me. "Your mom is a fighter"she says. "She's still here because of you."

I take mom's hand and tell her I love her. I tell her we are OK, to do what she needs to do. We'll be all right. We've said that before. Does she hear the tears in our voice and think our heart isn't fully in it?

I tell my sister that if Mom is sticking around for anyone, it's her. My sister has been my mom's primary caregiver for several years and has built a strong emotional bond with her. 

She looks at me in surprise and says, "No, I think she's sticking around for you."

"Me, why?" I ask. She replies that my wiring and Mom's are very similar.  That is true. We have always understood each other viscerally. 

My sister read that people sometimes slip away when loved ones step out of the room, as if their presence ties the person to this world, the watched pot theory. We decide to vacate the premises for awhile. We ask the nurse to check in on her while we are out. After awhile I get a text from my sister-"It is OK to return now". What does that mean I wonder as I walk quickly down the hall. Did it work? Mom is still breathing quietly.

One of my mom's caregiver from the past few years stops by. They had a lovely bond and Sally talks with her about a recent trip to Niagara Falls. Mom went there on her honeymoon. Virtually every day, even in hospice, my mother has started the day by asking, "So what's the program today? An odd question from one's deathbed. We ask Sally if Mom said that to her as well and learn that was her daily greeting.

In the midst of this limbo, I continue to deal with practical matters, shutting down services for my mom that are no longer needed. If you ever need an outlet for all the emotion around the impending death of a parent, call their cable company. They will not disappoint in providing you with a cathartic experience. As my husband quipped, they have a reputation to uphold. 

I had cancelled her Direct TV service and was told we would receive a credit. I dutifully spelled out my address for them. We then received an email that they were sending out a debit card with the credit to an address which vaguely resembled mine, but was incorrect. I called to Citi, the administrator, to have them make a note of the correct address in case it came back in the mail.

Then the idiocy began. They wanted to speak with my mother, obviously not feasible as I explained to them. Then they advised me that they couldn't make that note without me faxing my POA to them and emails with scans were unacceptable. To correct an address that THEY recorded incorrectly. After working my way up a chain of idiocy, I must confess I was none too polite as I let loose from the middle of the parking lot, shaking with rage. This is not a time when one suffers fools well. Never was very good at that even on a good day.

We are obviously wearing thin. It has been nine days since that first phone call and seven days of hospice. And so we wait.

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