Death is a well maintained secret

Another chirpy phone message from hospice people, one with the news that mom is back on Namenda, an Alzheimer's medication. Apparently they have determined that this reduces her distress, and that another medication - Ativan - is "doing her no good at all". I wonder how they do this - how they can tell that one medication does work and another doesn't. I think the aides there see the behaviors up close, and report when she is difficult. But I marvel that they put it all together.

Mom was deep asleep when I got there today, later than usual because I was leading a board retreat for a non-profit until almost 2 pm. I talked with the hospice lady who had just put her to bed, comparing mom's progress with her father's dementia which is just beginning. She has worked for hospice for 11 years. How amazing to think that she lives every work day present to dying and death.

But then, how amazing I have been sheltered from it my whole life. I remember an uncle on his deathbed in our home when I was very little, and I knew it was a dire situation but do not recall a long process or any great grieving. Perhaps we shelter children from that. I also remember visiting a dying grandfather once in the hospital when I was 13 - he cried when he realized who I was. Both my grandmothers died after I had moved away, and I was not involved in their dying process.

This is such an education. I wonder how many people are as caught off guard by dealing with dying as I was. It seems odd that it is not a more acceptable subject, and that we don't educate one another. When my father was dying, I was with him when he was at home and then later in the hospital. I remember those interactions to this day, very special. But he and my mother never talked about the fact that he was dying. I had thought he would be interested in a conversation about it (he was my first transformational coach and trainer), so I sent him a copy of "The Tibetan Book of the Dead" (which taught me much, but only in theory and not, alas, the reality of the smells and inconveniences around dying). He never mentioned having received it, and I didn't ask.

The case for killing granny...

Newsweek's article on how we are changing our views of death and dying is interesting. you can see it at

http://www.newsweek.com/id/215291

It's time to update this dying thing. Bring on the death panels?

Time and time again

Wende was here with mom while we were away, and observed that she is "slowly fading away". Mom was happy to see her, which was nice, but even so, Wende can't do a visit longer than about 35 minutes either. Time slows down in the Chute, and every minute feels like an hour. There is no real conversation with her - even though she tries to say words, they come out like random syllables that don't fit together. Still, she has a sense of humor and likes to tease.

I brought mom a pine cone from the forest near Yosemite, where we had our program last weekend. It had a greeny frosted look that made it beautifully two-toned, and she kept it as her centerpiece on the dining room table. That's good that she now feels her dining table is safe enough to leave "her" things - she used to worry that someone would walk away with her treasures and she'd carry them around with her all day. She enjoys her table-mate, Marta, who is silent and seems kind. Marta can't get her ice cream onto a spoon and lifted up to her mouth, so I almost always feed her when I'm there.

It's a strange world we live in. I'm reassembling my to-do lists after a week away. The fast world of email and text messages means that my calendar changes quickly, and I'm working on so many different fronts that I sometimes feel like I'm in a triathlon. It's probably good balance to visit the Chute time vortex now and then to remember that there are many realities operating all at the same time.

Personal breakthrough

OK, I had a really bad week last week, with mom's distress, my concerns about getting things done, etc. Something shifted on my way to Jazzercise Saturday morning, when I suddenly began "talking back" to the thinking that has been running me. I had a conversation with my mind, and my mind, admonished, receded into the background of my life.

"What am I waiting for?" I wondered. I can make all the choices for what I want for my future right now, and nothing is dependent on what happens to mom or when it happens. Why is this uncertainty so much of a problem? Life is uncertain, and I'm not worrying about that. Get over it - there is uncertainty and it doesn't matter unless I say it does. So I'll say it doesn't and go on about my business. I've got my life back.

My friend Brian says this kind of breakthrough is like when you've been living in your own familiar house, a place where you know all the nooks and corners, and suddenly you fall through the floor and land in a whole different place. It's vaguely familiar, but everything is arranged differently, there are new things there, and some old things you hadn't noticed in a very long time. A completely new space to live in. That's what this is like - I am not seeing the same world at all.

I came home and put a quick and simple thing in place to remind me that life is Right Now, not something to wait for. I emptied my summer purse, then got out my very best bag (purchased a year ago in NYC) to be everyday purse - it's not just for special occasions any more. This is a little marker I'll touch many times a day to serve as my This Is It message. I'm not going back into the fog of being a victim to uncertainty.

Another phone call Saturday evening - mom fell in her room again - and I didn't lose an hour or a day worrying about it. I spoke with the nurse, and when we ended the call I went back to doing the task I'd been doing. I saw mom today and she's fine. Almost nothing she says makes sense any more - she has words but can't put them together. But I nod and say something back and we're fine. And when I left I wasn't distressed or agitated. It's a new day and I'm present for it. Hi, everybody.

White flies in my brain

Friday, the plan was to finish drafting the agenda for a non-profit board retreat I've been hired to lead, then write up the summary of deliverables I've agreed to generate for my city government client. A good completion, I thought, to a piecemeal week.

The phone rang. The Chute Director said mom had fallen in the night, is okay, but may have some bruising. The mail came, with more items for mom than for us - a frequent occurrence. Then the hospice social worker called to see if I wanted to talk about my concerns about mom's finances or anything else. I told her this uncertainty is stressful, and that I was now going to the Chute to check up on the situation. Enough said.

Mom was very distressed, in a wheelchair, wringing her hands and talking in sentence fragments. She said "girl" and "mother" many times in these fragments, but I couldn't piece together any meaning. She was clearly frightened and disapproving. She had not eaten or drunk anything at either breakfast or lunch, and did not want to go back to bed, join the circle, or even move, and put her feet down to brake against any attempt to get her out of her room.

A wonderful aide came in and got mom to agree to "come out and sit with me", making her invitation personal and relaxed enough to succeed. Then the activities lady gave her a simple puzzle, and mom was completely engrossed in short order. She even began to sip from her glass of Ensure. We took a brief trip outside to the patio, but she was too nervous to stay long, so we went back to the puzzles. Those seem to work.

By the time I left, it was 3:30 pm, too late and too wrung out to be effective. I emailed the nonprofit lady and said I'd have the draft agenda after the weekend. No way my brain works for that kind of thinking now. And the city deliverables summary will also have to wait. I have so many things that would be great to do, and so little brainpower to do them.

But I saved a plant today. One of the plants on the patio tray had the worst case of white flies I've ever seen. I brought it home, pruned away leaves and sprayed it with a soap mist to scatter the flies. I believe it will recover. It's a Gerber daisy, and might just bloom again in my lifetime.

How to be productive in all this swirl?

A harried day. Then hospice calls with another chirpy message. It was the nurse, so I asked about the meds, and sure enough, mom is still taking an antidepressant and an anxiety-reduction medication. Apparently hospice finds them beneficial. She is off the Alzheimer's medication, which is good.

I told her that I find the uncertainty of all this - not knowing how long it will go on - to be very stressful. I said I'm glad mom is comfortable, but that this is really hard. All of a sudden, I was afraid I was going to cry. It's so much easier to be angry about this than to be with the sadness and helplessness of the situation. But it's really awful and I wish it were over.

She suggested maybe I would want to talk with someone from hospice about how difficult this is for me. I cannot think of a more pointless exercise. I do not want to talk about this. It occupies too much of my life already - I can't even get the mail without being reminded that I'm in charge of someone else's life, such as it is. The nurse's suggestion snapped me out of it - I thanked her for the information and wrapped up the conversation. When I hung up the phone, I just wailed. This is horrible. Every day every day every day.

Socks, Meds, and Dying

Took a big armful of laundered & ironed clothes back to mom's. Thought we'd visit a bit, but again she was asleep in her room. I guess the Activities Ladies are on an extended holiday.

Sock thief. I found two "orphan" socks in her closet Monday and hung them on the rack in the closet, thinking I'd find other mis-matches and eventually pair up most of them. Went back today and the orphans were gone! Who would throw out socks? I made a note and clipped it to a bag on her closet shelf saying "mismatched socks", and tossed in the latest findings. Probably today's orphans are the mates to the disappeared Monday ones.

Medications. I have 3 meds that should have been stopped, but were on her insurance statement for July: Namenda (for Alzheimers), Lorazepam (for anxiety), and Mirtazapine (for depression). I asked the Chute Director about discontinuing them, reminding her the doctor said he would stop them. She'll look it up and let me know.

Reading about the "death panel" scare. It's good that people are talking about this. Mom's doctor said, "Nobody dies in America without doing everything possible." This is a hugely expensive and wasteful philosophy. It's time we learned to include death as part of the Grand Scheme and stop pretending it's not going to happen. It's also time we learned to deal with dying in a more grown-up way. There are quality-of-life questions that take courage to ask, and it's not socially correct to talk about "assisted dying" even though it goes on all the time (ask any honest physician). I wonder what it will take to talk straight about all this.

It's good to have a room of one's own

Another visit to mom's, but it turned out to be just for closet & laundry updates, because she was sleeping soundly right after lunch. Probably the best option, since it's a holiday (Labor Day) and the Activities Ladies are off work. That means the only entertainment for the ladies (and one hunched-over man in a wheelchair) is to watch the Music Man video. When I went in, the movie was just starting, and by the time I was ready to leave (I spent 20-25 minutes in her closet - much more than usual, but it needed work), all the ladies but one were sound asleep in their chairs. So mom's nap was the smart choice.

I'll see her on Friday, since I have business meetings every day between now and then.I know the Activities Ladies will be back, and the hospice people will be looking in on her too. With the aides, the nurse, administrative people, and the other residents, she's never lonely. Probably her nap today is the best getaway she could find.

When do the "Death Panels" start?

Saw mom once this week. Visited her Tuesday at 1:00 pm, but didn’t talk with her – she was in bed, deep asleep after having been “mean, stubborn, and banging her walker” at lunchtime. I don’t know the details, but they took her to her room and she went to bed. They said she’s done this before, and played it down in case I was worried to discover that my mother has a nasty side (actually, I remember that side pretty well).

The next day I learned that she had pushed an aide, tumbled her right into the shower while she was helping pull up mom's pants. The aide said to her, "What would your daughter think about that?" and mom got sheepish and said, "She wouldn't like it."

So I went back on Wednesday and she seemed fine. Hospice people think she's fine too. I get these chirpy little notes from the hospice people about what they did together (a shower, reading, going outside in her wheelchair). I also get chirpy phone messages about how cute she looked in her blue outfit, and how she ate well at breakfast, and telling me that she seems comfortable.

So why is she in hospice care? Is she happy? Upset? How much of the day is quality time for her, and how much is distress? I have no idea - I just keep toting the laundry and handling her paper trip. Next step: an appointment with her annuities manager to see how long she can keep living in her nice little apartment. When she runs out of money, she goes on Medicare and moves into the acute care facility downstairs, sharing a room with no personal furniture. She was there after she had pneumonia in 2006 (this process is taking SO LONG!!!) and she hated it there.