It's a Miracle? Part 2

I talked to my dad yesterday. My mom is off of hospice.

Less than a year ago, my father decided to put my mom on DNR (Do Not Resuscitate) and sign her up for hospice. I flew out to Ohio to visit her shortly thereafter, thinking it might be the last time I see my mother alive. She was refusing to eat, a major signal for imminent death. I was about two and a half months out from my knee surgery and hobbled through the airport to get to Ohio to see her.

Now she is off of hospice. She is feeding herself at every meal, using a spoon and holding a bowl. She is still eating soft foods, so she doesn't choke, but this is a major improvement over being spoonfed for the past year. She is gaining a little bit of weight instead of losing it. She is up to 100 pounds from ninety-eight. She is still thin, but that was what she weighed in her thirties. I am not sure how much her communication has improved. I'll have to check with my dad on that.

I remember talking with my physical therapist, Evan, when my mom went on hospice. His mother is a hospice physician.

"Sometimes people get better on hospice," he said. "You'd be surprised."

My mother's father was put on hospice for prostate cancer when he was in his nineties. He got better and was taken off hospice. He died about a year later.

My dad and I talked about the possibility of her having a stroke a year ago.

"I think it is possible, but I don't remember any sudden or dramatic changes," he said. "It might have been a series of smaller strokes that accumulated and slowed her down."

I wonder what would have happened if my mother didn't have Alzheimer's. Part of the issue of diagnosing a stroke is that her cognitive abilities weren't up to asking her questions about the state of her health. Would she have been able to explain what happened if she didn't have Alzheimer's? Could she have been able to sit through an MRI to figure out what happened?

It is interesting that she somehow managed to get better on her own. The "miracle" continues.

Retail Therapy and Slowly

My dad said he has resorted to buying stuff when he was getting down about my mother's Alzheimer's. He read in a book that caregivers should get out of the house and do something for themselves, even if it is small. He attended to my mother twenty-four hours a day, but occasionally he'd sneak out to the hobby shop and get a remote controlled airplane. I think he has acquired dozens of planes and drones and helicopters in the past few years.

While I am not taking care of my mom (I live 2,000 miles away) and I am in no way caring the burden my father is carrying, I do have a little bit of guilt that I can't do more to help him. In honor of my father, I made my own stress purchase today. Thanks to the Boy, I am a Lego fan. Like him, I look for sets with interesting pieces and parts. Birds, eggs, and an "Anger Management Class" sticker? A pig with a tattoo riding a Hog? I'm in.

I like game, but I have no desire to see this movie. Thank goodness my kids are at the age where we can see movies with real actors instead of only cartoons.

I also bought a bottle topper that seals the bubbles in leftover sparkling wine. I also bought a bottle of sparkling wine, not for celebratory purposes. QFC had sparkling wine on the endcaps and I thought it looked good.

I am also doing a lap dog therapy. Fox is happy to serve.

My dad does not have a direct communication style. He told me my mom is refusing to eat, but I had to look stuff up on the internet last night to determine she might be near the end of her life. I know he doesn't want to worry me, but still. Last night, I read on NIH's National Institute on Aging's website that not eating is possible imminent sign of death for people with dementia. It is possible my mom is dying, and giving her a feeding tube is out of the question. The NIH and my mom's living will are both against feeding tubes for people dying of Alzheimer's.

My mom could die in the next week or two. Or, she could live for another six months or two years. We don't know.  My dad said people who are in hopsice do better than people who aren't in hospice. I thought he was being optimista until my physical therapist told me that hospice patients have a longer three month life expectancy than similar patients who aren't in hospice. I guess my dad heard correctly.

It is hard to decide what kind of mode to be in: the panic, move fast mode, or the quiet, calm, take things as they come mode. Last night, everything started to move in slow motion for me as I figured out this could be the end. I knew Alzheimer's was fatal, but I also knew it is a long, drawn out way to die. I was more worried about her living in a catatonic state for years than her dying soon. I guess I am going to take this slowly.

DNR

Do Not Resuscitate.

My dad is going to sign the paperwork for my mom to enter hospice. As part of this decision, he will also sign approval for the DNR. If she has a cardiac event, they will not try to get her heart to beat. Instead, the caregivers will let nature take its course.

What does this mean? I am not sure. Are we admitting defeat, letting death win? Death always wins. Dying is the deal we unwittingly make when we are brought into this world. Our bodies will eventually fail.

Alzheimer's is a terminal illness. For the past several years, my mom has been well cared for and tended to by my father. He is a devoted spouse--an example, Exhibit A. He has given her everything he has to give. This past week, she has been refusing to eat. This could be a phase, or it could be her body's way of saying the time has come for her to die.

I did a quick google search of "Alzheimer's disease not eating" and found an article from the National Institutes of Health:

"Our modern culture tends to treat dying as unnatural. Our technology allows us to forestall death, yet cannot prevent it. Family members need to be informed, with great compassion, sensitivity, and patience, about the dying process and how natural and inevitable it truly is. The body is shutting down. The natural process of dying means that the body no longer wants or needs food or fluids. This is often viewed as unnatural by caregivers, and even some healthcare professionals. However, we need to explore our own feelings and attitudes toward death and dying before we can help families through this transitional process, this time of loss and change," comments Darby Morhardt, MSW, Social Worker, Northwestern University Alzheimer's Disease Center. Cessation of food intake results in the release of endorphins, which reduce pain. Feeding tubes and hydration block the release of endorphins and can result in weeks of "unnecessary suffering" Dr. Post said.

This might be the end of the line. This reminds of the great song of the same title by the Traveling Wilburys, the impromtu, all-star band of 1988-90 with Tom Petty, Roy Orbison, George Harrison, Jeff Lynne and Bob Dylan. Maybe the song isn't about death, but it feels that way to me now.

Well it's all right, even when push comes to shove

Well it's all right, if you got someone to love

Well it's all right, everything'll work out fine

Well it's all right, we're going to the end of the line

Hospice

(Note:  This was written December 28.  We did not have internet access in paradise.  Oh well.  Tells you something about the internet, eh?)

My friend Eleanor had a nephew who was dying of cancer or leukemia.  He has made quite a bit of money in his life, and wanted to die comfortably, but not in a hospital.  Eleanor emailed her friends and asked for nice hotels in Seattle.  One of the things about living in a town is that you never stay in the hotels.  I did a google search, and recommended the Fairmont, amoung other places.  He went there, looked out over the Puget Sound for a few days, and then died.  Hospice nurses came in and out.  Both the hospice nurses and the Fairmont staff were familiar with the process.  I guess her nephew wasn't the first person to decide to skip the ICU and got to a luxury hotel.

If I am ever diagnosed with a terminal illness and I have a short time left, I want to spend it here.  This is the nicest hotel room I have ever stayed in.  This place is so nice, I don’t feel staying in the room.  The view is better here than other places.  This is an apartment with a kitchen, so we are going to cook diner in tonight.  Nothing fancy – some noodles with red sauce, bread and salad.

Remarkable Mountains in the background.  Lake Wakatipu in the front.

They filmed parts of Isengard from Lord of the Rings out here.