Well, it has been quite the week (or week and a half I guess it really is) since I last posted here. As I'd mentioned previously, my mother had been ill but the hospital did release her to a very nice nursing home down the street from our house for further rehabilitation. So I'd been visiting her every day and she was coming along, although not back to her old self. But after she was there about four days, they called and told me she was being sent back to the hospital due to low oxygen levels and irregular heartbeat.
After another long evening in the emergency room, she was admitted to the hospital and I went home and went to bed. When I got there the next day I ran into the pulmonologist who was treating her (whom I'd never met before) outside her room in the hall, and he told me she was very critically ill and pretty much said that she might not make it out of the hospital. He then asked if she has a living will, and whether I had signed a "Do Not Resuscitate" order for her. I said no, I hadn't, and since just yesterday she was sitting up eating turkey dinner and talking to me, I wasn't going to sign one now either. I got the impression he disapproved of my decision.
Now, my mother is 91 and a lifelong smoker, and yes, she was in pretty bad shape. Apparently she now has fairly severe Chronic Obstructive Pulmonary Disease (emphysema as we used to call it back in the day) and it had started to catch up to her. But given all her female relatives lived well into their nineties, I wasn't writing her off just yet. I felt she still had "a lot of good left in her," so to speak!
Nevertheless, I was highly worried about her after my conversation with the pulmonologist - and more so when I returned to the hospital later on to find they had had to entubate her and she was on a ventilator in the ICU.
I thought this was it and was thinking maybe I should sign the DNR order...I went to talk to the attending physician in the ICU, and thank goodness he wasn't as much of a Mr. Doom and Gloom as the pulmonologist. I asked him if anyone ever comes off these ventilators once they're on them and he said "Of course! In fact, your mother is responding quite well." So I told him to keep actively treating her but if her heart stopped not to revive her.
So there I sat, at what I thought was my mother's possible deathbed. She was on the ventilator and couldn't talk, she was partially sedated, but she knew I was there and could nod and squeeze my hand. I started to tell her what we all want to tell our mothers on their deathbeds, how much I appreciated all she had taught me, that I loved her very much, that I was sorry for all the times I'd been impatient with her when she needed me to do something for her, and so on. Tears streaming down the cheeks, the whole bit.
Finally I left and went home, took a Xanax and went straight to bed.
The next morning I got up and called the hospital with trepidation to see how she was doing, and was astonished to have the nurse tell me "Oh she's coming along very well, we're weaning her off the ventilator and she's doing much better."
I got to the hospital and sure enough, my mom was awake and although she still had the tubes in her mouth and throat to help her breathe, they weren't breathing for her anymore, and she could nod and gesture to try to make me understand what she was trying to say. She also could write! So, although her eyesight isn't good so her writing is hard to read, at least I managed to understand what she was writing on a pad of paper.
By the next day the tubes were out and she could speak, and was much better than she even was before she went back into the hospital. Apparently her biggest problem is the COPD and the levels of carbon dioxide in her blood were too high - which causes the blood to become too acidic and can affect the brain, make a person sleepy and groggy all the time (all the symptoms she had had previously) and it basically isn't very good for a person altogether. In fact, if it goes too high it kills you.
The reason she had gotten so much better is the ventilator had helped her get her blood gases back in balance the way they should be. If I had signed the DNR order, she never would have been put on the ventilator at all, as that would have been considered extraordinary/heroic measures.
Today she is down to no oxygen mask (just the little tubes that go into the nostrils) and she is eating solid food again and is no longer in the ICU. My aunt and husband and I all went to see her and had a nice chat while she ate her dinner.
First of all, let me say that I know the pulmonologist meant well, and because he had no idea what my mother was like or what her background and situation were, he was just being honest about what he saw her condition to be, and what its prognosis might be.
And I also want to say that anyone who is in the position of signing a DNR order for a parent (or anyone else) and does so, has my greatest respect and sympathy. I did it for my father when he was in a nursing home with Alzheimer's Disease at 92, and had no hope of recovery. I never had any regret about it and was relieved when he passed shortly thereafter, as I knew he was out of his misery.
But it isn't always as simple as it seems. You have to really know what your parent or loved one would want, and how they approach life. My mother always has a positive attitude toward whatever situation in which she finds herself, and keeps her sense of humor no matter what happens to her. Naturally when I thought she was on her deathbed I started thinking those thoughts that are supposed to make us feel better..."Oh, she wouldn't have wanted to live like this anyway, always on oxygen and not being able to smoke her cigarettes, and all..."
But in reality that isn't how she would have felt at all. When she was much improved the next day but still not able to talk, she was gesturing to the tubes and trying to communicate to me. I said, "You want me to take out the tubes?" She shook her head no. "Do you want to get better and go home?" She nodded yes. Turned out she was just trying to tell me she couldn't talk because of the tubes and was aggravated about it. The next day I told her my first thought was she was telling me to "pull the plug" and she laughed. That was NOT her intention whatsoever.
I'm just telling this story to remind everyone to have these conversations, no matter how difficult, on a regular basis with your elderly family members. My mother had signed a living will 15 years ago but I had no idea whether she still didn't want "extraordinary measures," nor under what circumstances she wouldn't want them. It's easy to sign something like that when you're relatively healthy and younger and think you wouldn't want to live with various bad conditions when you're older. But when you get to "older" you may think differently!
As far as I can tell, a living will is really more for the family member who is in charge of the person's medical decisions when they are unable to speak for themselves to be able to make the difficult decisions. If an ill person really doesn't want extraordinary measures to be taken, and you as the caregiver really know it, you can produce the living will to legitimize it and enable the hospital and health workers to proceed accordingly. That is because they default to the "do everything you can" option unless told otherwise.
But even if a person has a living will, be sure to check with them occasionally to make sure you understand their real wishes and what wishes they would have under which circumstances. It can be a matter of life or death. No matter how well-meaning doctors may be, the only person who can make that final decision of whether to continue treatment is the person whose life is at stake, and we as caregivers and loving relatives need to be sure of what that decision would be.