I was just going through the comics I usually read online, and I came across this one from Jesus and Mo. It's especially timely, considering what my brother and I have been going through. It's at http://www.jesusandmo.net/2011/06/14/death2/. It encapsulates pretty accurately what I've come across from some of the more religious of my encounters, up to and including one of the hospice workers.
My mother was suffering. She wasn't in pain, at least not what you'd really call intractable pain. It was more like the pain she usually had with her arthritis, and she said acetaminophen helped her, right up until the time we started her on the liquid morphine. The liquid morphine was actually used more for the calming effect it had on her than for any pain issues. When she'd have some difficulty breathing, usually because she was panicking, we'd give her some liquid morphine, and she'd calm down and breathe better. Toward the end, if she had some pain from the skin lesions she'd developed from sitting in her chair so long or lying in her bed all day, because she hadn't been able to walk since the end of October 2010, we'd give her some liquid morphine. Her pain was pretty much well-controlled. No, she was suffering from something that morphine couldn't control: the loss of ability, and the loss of dignity.
My mother had always been an active woman. She had 4 brothers, both older and younger, and an older sister, who had contracted polio at the age of 2. My aunt was one of the lucky ones; she avoided the iron lung. The polio merely made her legs completely useless, and she used crutches to walk for the rest of her life. But with a large family like that, my mom really had to keep on her toes. She, along with her brothers, helped her father work in the cranberry bogs her father owned. When she got old enough, she went to work for herself, but brought much of her paycheck home to help out the family. She lived at home until she got married the first time, then went to live with her new husband. They had to travel, because he was a military pilot, and it was World War II. He was shot down over the Pacific Ocean; his body was never found. So my mother found herself a widow in her early 20's.
She worked at the telephone company for some years, as an operator, until someone told her that the local physician was looking for office help. She applied, and got the job pretty quickly. She worked in the doctor's office for a number of years, making appointments, doing some lab tests, acting as nurse, and just generally keeping things running. When the doctor got divorced and asked my mother to marry him, she said yes. They were married soon after, by a judge, in his courtroom. By the time I was born, my mom was 40 years old. Then she started having miscarriages, and was worried that she'd never have another child. My brother was born when she was 42. She was ecstatic. She'd waited all her life for children, and she finally had exactly what she wanted: a loving man, and two "wonderful" (her words, not mine) kids.
My parents took very good care of us while we were growing up. We took family trips all over, and every Sunday that my dad wasn't working, we'd go for a drive in the woods. We had everything we ever wanted, and my mother, especially, made sure we got to include our friends in things we did. Ice skating in the winter, swimming in the summer, trips to the beach, just about everything a kid could want. And the best parents we could imagine.
And so it went. Mom was the pillar of the family. My dad was always there when we needed him, but his job was an important one, and I was proud to be the daughter of a well-respected doctor. I didn't think it was at all unusual when we'd discuss accident scenes or suicides or murders or drug overdoses at the dinner table. And sometimes there were photos. But my dad talked about everything so matter-of-factly that nothing seemed wrong about it. And it wasn't wrong. He was teaching us very important lessons. Mom was there through all of it.
Life continued, and when my dad retired, we moved north. All four of us. Yes, the kids stayed with the parents, just like in the old days, when you only moved out when you got married. We were here eleven years before he died, of the double whammy of a subdural hematoma and kidney failure from diabetes. Nothing easy about that one, because mom and dad had both decided to keep the fact that he was dying of kidney failure away from us kids. My brother and I thought he'd just gone into the hospital because he'd fallen, struck his head, and had a bleed in his head. Oh, no. Even though they fixed the hematoma, he still died. He'd been in the hospital for about 3 weeks, right through Christmas, and died on December 30. But Mom took it all in stride, even though you could see she was grieving. She'd had some time to come to terms with it, because she knew of the kidney failure.
Did she decide, after my dad died, to leave the place he'd decided to live in after retirement, and go back home, back to where she still had family and old friends? After all, she hadn't really made many friends here. No, she decided to stick it out, and my brother and I stayed with her. We had good times, walking in the woods, shopping, watching birds. She loved life. She missed my dad, but you'd only catch on to that once in a while, when she'd start crying in an unguarded moment. She rarely talked about his end, but would talk about all the good times we'd had. "Do you remember when...", or "When I was working in the office..." Good times.
It was the physician I was working for at the time who suggested that Mom might have Parkinson's disease. She'd gone in to see him for some reason or another, and he noted a tremor in her leg. Just a little one, one she could stop without any effort, and just in one leg, but he thought it was a sign of trouble. He started her on an anti-parkinson medication, but she stopped it after a few weeks, saying it wasn't doing anything for her, and just made her feel not good. "I don't have time to be sick," she'd say.
A few years later, I got sick. Very sick. I was in the hospital for weeks, and came out better, but still unable to work. Mom worried about me the whole time, but tried not to show it. She was always cheery when she talked to me on the phone, or when she came to visit me in the hospital. I didn't see her every day, of course, because the hospital is an hour away from our home, and I told her she didn't need to make the trip every day. But she did call, every night, just when I was getting ready to watch Batman reruns on TV Land. When I finally got out of the hospital, I ended up having to go to another hospital three hours away for a procedure to try to fix a problem. About a week before I had to go for the procedure, Mom fell and broke her hip. I had to drive myself back home the day after my procedure, stopping long enough to spring her from the nursing home she'd gone to for rehab, because they were treating her very badly. It's never nice when you have to threaten to call all the licensure boards you can think of, plus the police to file an assault report, in order to get your loved one out of a bad situation. I'd never before seen my mother cry in front of someone who wasn't family; I didn't ever want to see it again. I made myself as obnoxious as possible and kicked a few asses around, but finally got her out. She had her rehab at home, but we realized she wasn't progressing as we'd hoped, so we consulted her primary care physician, who set her up for a neurology appointment. That's when we got the diagnosis: Parkinson's disease. That was October of 2002, just before I went back into the hospital for major surgery. This hospital was three hours away, so she only visited me once during the three weeks I was there.
I took her to her neurology appointments every 3 months, then every 6 months, when it didn't seem like the Parkinson's was progressing much. The neurologist would tweak her meds every once in a while, but otherwise pretty much just left her alone. She'd occasionally get a "tune up" at physical therapy, but that was about it. She would get frustrated on occasion, especially in the later years when she got tired of using the walker, or of asking us to help her get down the stairs, but she was usually pretty upbeat.
I'd noticed for a while that she had been getting a little forgetful, but I first realized something was very wrong in December 2009. We'd gone to one of her doctor's appointments, and I asked her if she wanted to go to my favorite garden center to look at the poinsettias. She said she did, so we took the side trip, then stopped at the supermarket we usually used about an hour from home. It was a long day for her. I asked her if she wanted to come in with me, because I'd brought her wheelchair (it had gotten to be too much for her to walk for long periods, so I just put her in a wheelchair so she could get out). She wanted to sit in the car, even though it was cold, so I told her I'd be out as quickly as possible, and left her in the car. Naturally, things didn't go as planned, the store was more crowded than I'd expected, and I spent much longer than I'd wanted. I was worried about my mom, and was glad to finally be at the front end, checking out. That's when I heard them calling my name over the store intercom, asking me to come to the front end. I'd just paid for the groceries, so I looked around to see what they were calling me about. I saw a group of people clustered around the bench at the front of the store, and my mother in the middle of it. No walker, no wheelchair, just my mom, with a bunch of people around her. WTF? I went over and asked what was going on, and was told that some ladies found her walking around outside in the parking lot, holding onto cars, so they brought her inside. She didn't know who I was. She didn't want to go home with me. She wanted to talk to my brother. A store employee was there, trying to keep the situation calm, and trying to figure out a way to help. I'd been in the store at least once a week for the previous 20+ years, frequently with my mom, so it wasn't like they didn't know me. I called my brother on my cell, and he tried to talk her into coming home with me. She wouldn't listen to him. The employee, who'd had a grandmother with Alzheimer's, did an excellent job of talking Mom into going home with me, and she, somewhat hesitantly, got into the car with me for the one hour trip. About half an hour into the ride, Mom reached over and patted my leg. I think she knew something was wrong, but didn't know what, but she knew I was upset.
It got really bad last May. That's when she decided we were trying to poison her, and she pretty much stopped eating. She was especially suspicious of me, telling me she'd called the United Nations on me, and the FBI knew all about me. She could still walk at that time, and there were many times when she tried to get out of the house and walk "home". It didn't matter that "home" is actually about 500 miles away, she was sure she was going to walk there. Or her brother was going to pick her up. Or someone from the FBI, or some other law enforcement agency. I didn't know who I was going to be, in her eyes, from one minute to the next. Sometimes I was myself. Sometimes I was my evil twin. Sometimes I was my mother's sister (who had died several years before, and she didn't remember). Sometimes I was her sister-in-law. Sometimes my brother was her brother. We never knew who we were going to be. She called us from sleep once, at 1:00 in the morning, in order to argue with us for the rest of the night, because she wanted to go home, and we wouldn't let her. She got violent sometimes, throwing things and lashing out. We were keeping her prisoner. She was seeing things, people who were trying to keep her a prisoner in what she didn't believe was her own home. It just went on and on. Her doctor, who is a good friend of mine, finally suggested that she might be a candidate for hospice services, because it sounded like it wasn't just Parkinson's she was suffering from, it was also a dementia that can come with and/or mimic Parkinson's, called Lewy Body Dementia, and we clearly needed help. We accepted the offer, and hospice services were started.
She had her hospice intake on a Thursday, by a nurse who was filling in for what would be her regular nurse. The following Tuesday, Mom became unresponsive. My brother was home alone with her at the time, and he called me at work. He also called her doctor. I got my work partner, and we came home, arriving just before the doctor. The doc suggested we call the hospice nurse and see what she had to say, so we did. Her regular hospice nurse, who we'd only met the day before, suggested a trip to their hospice house, a lovely facility that only takes care of hospice patients. She wasn't sure what was going on, not being at the house and all, but she thought that maybe this was "it". She got Mom a room at the hospice house (there are only 17 beds there, so that was quite a feat), and while we were on the phone with her, Mom came out of it. She hadn't been taking her Parkinson's meds correctly, and had a "freeze-up" episode. But she was pissed! She was yelling, throwing things, really throwing a tantrum a 2-year-old would be proud of. We decided that the hospice house trip was still the best idea, because the nurse suggested that maybe they could work on getting Mom on some meds that would help her out. I tried to give her some medication to calm her for the trip, because my partner and one of my coworkers would be taking her down in our ambulance. They wanted me to go off duty and be with my mother at the hospice house. I tried to give her the medication, but she spit it out at me. Good thing she didn't have very good aim, or range.
Her stay at the hospice house lasted about a month, and when she came home, she was much calmer, even though she thought I was someone else, and that my brother and I were getting married. That went on for a little while, but after a while it all settled down, and she finally figured out who we were, and that she was home. But over the months, you could tell that things weren't right. She'd have lapses, and there were times she was so frustrated with not being able to think of something, or remember how to do something, and she would just sit and cry and say "Just let me die!" Here was a woman who'd been independent all her life, and now she can't even recognize her own kids, or make herself a sandwich. And she'd been losing weight. Three years before, she'd been about 120 pounds. Now, she was 80 pounds.
Then at the end of October, I got a call at work from my brother, who wasn't sure if she'd had a stroke or not. I brought my work partner and my work truck home, and we checked her out. If it was a stroke, it sure was a weird one. I tend to believe it was more of a Parkinson's thing. But she suddenly couldn't walk. I ended up having to go on an emergency call that night, then another one, so I didn't get home until 1 AM. That's when I found her, on the bedroom floor, in a twisted heap, with a dislocated hip. So back to the hospital I went, with my mother, in the ambulance, with my brother following in my car. She dislocated the same hip a total of 4 times over the next few months, and each time she ended up in the operating room, under anesthesia, making things worse with her dementia, and with the hospitalists and the orthopedist trying to tell us that she needed to be in a nursing home. No thanks, we told them, she's a hospice patient, and she's coming home with us. We'd promised our dad we'd keep her home as long as we could, because we knew she wouldn't last 2 weeks in a nursing home, and it would be a really bad 2 weeks. So she came home.
Over the months, she got worse. She didn't eat much, and lost more weight, and got much more demanding, maybe because she was bored, or lonely, or who knows. Her falls got more frequent. It finally got to the point where my brother and I needed more help, and hospice jumped in, giving us aides 5 days a week. They helped Mom get dressed, helped her get cleaned up, changed the bed linens when she wet them. From a woman who hated to ask her daughter for help in the personal care area, to a woman who relied on strangers for all that, because her kids couldn't do it all. And finally, a complete loss of dignity: a woman who couldn't even turn herself over in her bed, who couldn't even get herself out of her bed to use the commode.
This is what I'm talking about. Sometimes it's not the pain you want to go away. Sometimes there is no pain. Sometimes it's the fact that you can't fucking do anything you want to do. Sometimes it's the fact that you can't recognize your own kids, and you know something's wrong, but you can't puzzle it out for yourself, and when your daughter points it out to you, during one of your few moments of clarity, you cry uncontrollably and actually say that you want to die. People focus on the pain, and how we can control pain, we have great drugs for that, but you can't control the fact that someone you love feels completely, absolutely useless, and a burden, and no longer has ANY quality of life, and is just working on quantity of life, which is clearly not what they want. And you know they feel guilty because of what they're doing to their loved ones, and sometimes they feel guilty because they know they're taking up resources that might be better spent somewhere else. I couldn't do that to someone I loved. I wish I'd been able to help my mom.
Sorry for the length of this post, but holy fuck. My poor mom suffered greatly before she died, and I couldn't do anything about it. And the fact that there are some numbnuts out there who actually see that as a good, godly thing pisses me right the fuck off. OK, fine. YOU do the Christlike thing, and take her suffering on yourself. I would've done it in a heartbeat, if I could. And I'll bet you godly people would just put your loved ones in a nursing home. Assholes.
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