July 21, 2010

How To Lose a Limb: A Cautionary Tale

As I write this, I'm sitting in the hospital, next to my mother's bed. She has dozed off but I can tell after many, many hours of watching her sleep that she's only sleeping lightly and can be wakened with little effort. She has become a champion sleeper during her time in the hospital (then the skilled nursing facility, then the hospital once again); you have to be to get any rest with all the noise and interruptions a hospital brings. I've seen her sleep through blood draws. It's really quite impressive.

I just wish this were a skill she hadn't had to develop. She's tired of being in the hospital. She's tired of the needle pokes, vitals checks, blood sugar tests, IV flushes, bed repositionings, med distributions, ultrasounds, procedures, catheter adjustments, blood transfusions, nursing shift changes, doctor drop-ins and, of course, hospital food. I'm tired of all these things for her, too, because it's hard to watch her endure them day in and day out. (Although I think the food is better than she does.)

And we're not done yet. I've been hesitant to detail exactly what has been going on with her for a couple reasons. 1) I wasn't ready for all the questions; sometimes I don't do well when a lot of questions are thrown my way. After a while, I start to get defensive -- it's a personality flaw I'm aware of and it's one I'm trying to get past. So bring on any questions. If it doesn't violate her privacy, I'll do my best to answer it. 2) Then there is, you guessed it, her privacy. If you've been reading here for any time at all, you may have realized that I don't talk about super-personal things here. I don't fault bloggers who do use their spaces in that way, it just wasn't ever what it was about for me. I figured that if I don't talk about my own personal health issues here for the most part, how could I talk about hers? But her health issues are about to change my and my entire family's life in significant and unavoidable ways. Now that this time is here -- it has always been in the offing, but we've been keeping it at bay best we could -- it's now part of my life and this blog has always been about my life, in one way or another. So it's relevant and it's what I need to write about. 3) It wasn't certain what was going to happen. She has a lot of medical concerns and it wasn't clear which one was going to "get" her first. I think perhaps I felt like not defining things here kept them nebulous enough to avoid dwelling on them. Does that constitute denial? I'm not sure.

As I alluded to in my last post, Round 2 is here and it's time to take it on. My mom has had Type II diabetes for decades. This has caused a myriad of medical problems for her, especially over the last decade. The most problematic has been her circulation, especially in her legs, and she has had: two femoral bypasses, one in each leg; surgery on her carotid artery to unblock it; two heart catherterizations that have resulted in multiple stents being put in her heart; multiple laser eye surgeries to stop bleeding in her retina; the onset of congestive heart failure; foot ulcers and dry gangrene; and the amputation of four of the toes on her left foot. She has also been on the brink of kidney failure for about a year, which has required blood tests every two weeks for that time, and we know that dialysis is almost certainly in her future. Another round for another day...or year.

She has come through each of these things, some more easily than others, with a lot of effort, a lot of love, a lot of tears, a lot of pain and a lot of time. It does get harder each time, however, and though each was serious unto itself, life always went back to normal eventually. That's not going to happen this time.

Tomorrow morning my mom's right leg will be amputated above the knee and she will likely never walk again. Because of her age and weakened condition, she may not be able to get or adapt to a prosthesis, so we anticipate that she will be in a wheelchair from here on out. I hope that it will be one she can move herself, but she has little upper body strength so I am not sure that will be possible. (An electric one is, of course, an option but she has an aversion to them and they're a little too big to use in her condo.) I am her primary caretaker and while she has been the center of my life for the last year, this surgery will probably double the effort required to do pretty much anything and everything.

I will do the best I can, with a lot of help, but there's no doubt that it's going to be overwhelming at times, for all of us. My mom's biggest concern, as I imagine it is for most parents in this kind of situation, is that she is going to be a burden to us. I can't say absolutely that, at times, it won't be a burden; I think in part it depends on how you define "burden." I don't approach it as a burden, but I know that it is weighing on her mind so heavily that I worry it can affect her ability to recover and rehabilitate and I know that it is life-changing. The emotional part of it has been, and will be, very hard. But, to me, that's part of family. It just is.

Another part of family is knowing the best and worst parts of your family members, and how who they are affects who you become. Case in point: I know that my mom has always put us first, to the detriment of her own health. She was told in the mid-70s that her blood sugar was high and that she should just cut out sugary soda and other foods. This was right before we moved from California back east to New York and our lives were turned completely upside-down. We all switched to diet soda and kept right on going, trying to make the best out of some crappy circumstances for the duration of the 80s. Mom made sacrifices for us and was always there for us, working full time and taking care of us and the house, while putting up with two kids and a husband who had a boatload of his own problems. She dealt with money issues, worked day in and day out until retirement, got us both through college, became a widow, took in her two elderly aunts and nursed one through the ovarian cancer that eventually killed her, helped us move back to California (each of us moved out here at different times), packed up a huge house and sold it, and moved to California, too.

During most of that time, she ran on stress and adrenaline and didn't take great care of herself. She was too busy taking care of us to dwell on how she was feeling. I come from a family of stoics, and she learned those lessons well. Too well. In the late 80s/early 90s she was diagnosed with Type II diabetes and had to make significant dietary changes and start taking medicine. But really, it was too late and the damage had already started to impact her health.

The consequences of not addressing her own well-being in favor of taking care of her family for all those years led us in a straight line to today, on the brink of major surgery that has her worried about how she will live the rest of her life and how it affects her children. It's this last part that has me shaking my head over the irony of the situation; this is far worse than if she had said no, we can't do that because I need a break, or you're going to have to skip that birthday party because I need to attend a class on nutrition, or I'm not going to be able to take you to the mall because I need to work out for hour or two. We would have been okay, if disappointed at that time -- or, okay, as teens we would have been devastated...for all of an hour -- but we also would have been better off for seeing our mom make her own mental and physical health a priority. This fear, this worry, this emotional draining now is so much harder than it might have otherwise been if she had said "no" to us and "yes" to herself just a little more often. I think it's this part that is more of a burden than any difficulty we will face as she learns to transition from a wheelchair into a bed: She loved us more than she loved herself and now she's paying a steep price for it.

Now it's time to go wake her up so she can have a last few drinks of water before it turns midnight and she's not allowed anything to eat or drink, pre-op. Tomorrow will be another stressful and emotional day. We'll get through it together, barring any of the many complications that could arise, and we'll be back here tomorrow night, with me watching her sleep and wondering about how the next day will go.