Saturday, July 11, 2015

Report from Pillville: Read This.

I do a lot of self care. Today it was yoga. And a little drumming. Thank you Yoga-by-the-Sea.

Aid-in-Dying Laws Are Just a Start

I'd pull out a quote or two, but really you ought to just read the article. All of it. When you get to the part about how much Medicare pays for what, have a box of kleenex and a bucket ready. It's sickening and sad. If I were in the mood for a crying jag, I'd just read that paragraph over and over. I ask myself how in the world we got on this train. Well, it's a money train.

I used to be horrified at my mom's lack of personal awareness and responsibility for her health. Smoking: "Something's gotta kill you." Drinking: "I've never been drunk." (Hahahaha) Exercise: "All that moving around makes me seasick." Diet: "There's not a damn thing wrong with white sugar." The list of surgeries and procedures she's had is as long as her arm. Until recently her list of medications was as long as her other arm. She's racked up a tab with Medicare that ought to win her some kind of prize. Except that would be wrong.

As I've witnessed the loss of more of her abilities, as she's lost most of her desire to engage socially, I wonder what loss will be next. Will she go through another period of excruciating pain? If she lives another month, another year, will she be able to walk--even from the bed to the bathroom? She can't hear much even with hearing aids. She can't remember how to crochet, and I don't think she can really read. Today she couldn't think of the name of the bird she likes best.

During her last hospitalization, when a CT scan turned up a new tumor in her lung, the doctor who delivered this news was young and confident. "You'll want to set up a consultation with an oncologist," she said. I restrained myself from shouting, "Are you fucking kidding me?" My mom has been in what the article refers to the "gray zone" for some time. I do not want to extend her time there. And neither does she. Her advance directive emphatically states that she wants no more surgeries. I think it should be a doctor's job to present to a patient like my mom that she has the right to do nothing, to ask if she has an advance directive (I think it's been scanned into the system at the hospital she was at,) and to read that advance directive.

Three years ago I had some pretty rosy ideas about moving my mom in with me for the last portion of her life. I can't say that I regret my decision. I'm tired to the bone some days, but despite my previous post, I don't see a way to quit. Nor can I conceive of a better option. She's trapped. I'm trapped. But the biggest and baddest surprise was the system. The way she'd lie on a gurney for 12 or 10 or 16 hours in the ER before being admitted, the way she'd be pumped full of antibiotics whether or not there was a clear reason for it, the way she'd be completely debilitated upon every return home after lying in bed with only a 10 minute therapy walk (if it was a good day,) the way most of the staff in the hospitals and doctor's offices never seems to know that she's hard of hearing, the way a weak arthritic person in the hospital can't actually open anything to eat it or drink it, the way I'd come home with an impossibly frail person in the evening on a Saturday or a Sunday on very short notice and then have to go out to get a prescription filled. And the pain. Sure, the system as we know it will keep you alive, but they won't prescribe a decent pain killer at a dose that will provide relief because doctors are worried about being accused of over-prescribing.

Yes, there are good things that happen each day. I recognize them, honor them, celebrate them. And I am profoundly grateful for hospice. But mostly the gray zone is not a happy place. Life is eroding here, inch by inch and it's a real and painful thing. More and more, I do not hold this woman with an 8th grade education responsible for the choices she's made about her health. She's the sort of person who worships doctors. "I've always taken my pills just like they've told me." My pointing finger is moving away from her and zero-ing in on that fork in the road with the sign that proclaims life is better than death no matter the misery, no matter the cost.


Elizabeth said...

Do you hear me, clapping?

And as an aside, Katy Butler is a Hedgebrook writer -- her Facebook group, Slow Medicine -- is wonderful.

Elizabeth said...

Do you hear me, clapping?

And as an aside, Katy Butler is a Hedgebrook writer -- her Facebook group, Slow Medicine -- is wonderful.

A said...

Dr Victoria Sweet, who wrote God's Hotel, is a wonderfully sane and insightful voice in the slow medicine movement.

janzi said...

an amazingly clear view of life today... they DO keep us living despite the pain,.and the meds are never strong enough, in case it causes addiction.... REALLY.... at the end stage of life addiction should be tolerated, as it gives a person relief from the awful pains endured... I applaud your thoughts and hope that life will start to be a better one as the days go onwards.. not wishing an end to your mother's life, I do know how hard it is being a caregiver to parents... hugs from across the pond.. J

Matrix Music Teacher said...

Denise, you sound like you need a big dose of Roz Chast! If I knew your address I would send you her book "Can't We Talk About Something More Pleasant?"
You need some good laughs! You are not alone in the craziness of taking care of your mom. You are not crazy for feeling crazy! You are a hero.

ain't for city gals said...

I encourage you to read Being Mortal, Medicine and Matters in the End by Atul Gawande. He is repeating the same words you are...

Elsewhere said...

You say it like it is and I thank you for that.
You are not alone in this.
Neither am I.

Ms. Moon said...

Things in this area WILL change, as all things do, but not soon enough for it to be of use to you or your mother. This is simply an insane situation. At least with hospice you know there will be no more ER visits.
Oh, Denise- I feel so helpless. I wish I had some advice that would help you but of course I don't. Because obviously you have researched the options and are left with none.
All I can say is that I admire you and I don't know how you do it.

lily cedar said...

Older patients especially don't know that they can say no to treatment. In my humble opinion it is not appropriate to treat a frail, elderly woman with so many other problems. Your mother is dying. It is a natural process that we will all go through eventually. It is not a failure of care or medicine, it is normal. What we as a society don't understand or accept is that we will all die. The trick is not to medicalize death. I just made up a word.

I hope I'm not too blunt. I'm a nurse and it breaks my heart to see patients assaulted as they die. My own father died of pneumonia, after years of liver failure. The nurses and the doctor were shocked when we refused antibiotics or blood transfusions and let him die. He did not want treatment, did not want to go into a nursing home and we were carrying out his wishes. He slipped away peacefully a few days later.

My mother was the same way. She did not want to go into a nursing home. The last few days of her life she ended up in the hospital and when a stroke occurred I told the doctor, in front of my still coherent mother that we did not want any treatment. The doctor looked uncomfortable and then looked at my mother. I repeated to him that my mother had told me that she did not want treatment and that she was in agreement with that. Her stroke progressed and she slipped into a coma. Hours later after I went home for a few hours of sleep I came back to her hospital room to find her room filled with doctors and talk of ICU. No I said. Leave. This is not what my mother wanted. I was polite but made them leave. One doctor had an NG in his hand. No fucking way I thought. They left. I shut off the oxygen and the IV. I say with my mother and told the nurses to leave my mother alone. No vital signs. Five hours later my mother slipped away with one final breath. It was peaceful and I'm thankful I could give her that.

I can't remember if your mom has a pacemaker. That will prolong her life because it will keep her heart beating. There is a very good book, "Knocking On Heaven's Door" by Katy Butler that I would recommend.

Taking care of your mother is a compassionate and incredibly difficult thing to do. It's not easy but it is kind.

Karen Pokraka said...

I, too, admire your intentions, strength, guts and all of it.

Allison said...

The fatal flaw with all of the death with dignity laws is this: You must be mentally competent with a life expectancy of six months. My brother has early onset Alzheimers. He's reached the point where he can't read, write, use electronics, etc. but he is self aware and knows what it happening to him. He wants to die, immediately. He'll live way more than six months, so his only out is to stop eating and drinking, which is an incredibly terrible way to go. It's one of the worst situations there is. It's hard to stop living without help. Nobody has phenobarbital anymore. I have no children to watch out for me when I am truly old, and I have to say the process of dying scares me more than the act itself. Your Mom is incredibly lucky to have you in her life to protect her from the doctors. We all admire you for doing this.

37paddington said...

A heartbreaking post, and so very brave. I admire you and your mom in this dance, and want to assure you that whenever she chooses to exit stage left, you will know you've done everything, and she knows she is loved, cherished, and you will actually begin to feel some relief that she is no longer suffering. I didn't know I would feel that way, but as much as I miss my mother, I do. Sending love.