CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: Mehitabel9
"ALS is probably the disease I hate and fear most."
That’s what a commenter here – a registered nurse, according to his UID - said in reply to something I posted not very long ago about my mother’s ALS. I fully understand why he would say something like that.
Amyotrophic Lateral Sclerosis. Lou Gehrig’s Disease. WebMD, describes it thusly:
Amyotrophic lateral sclerosis, or ALS, is a disease in which certain nerve cells in the brain and spinal cord slowly die. These nerve cells are called motor neurons, and they control the muscles that allow you to move the parts of your body. ALS is also called Lou Gehrig’s disease.
People with ALS gradually become more disabled. How quickly the disease gets worse is different for everyone. Some people live with ALS for several years. But over time, ALS makes it hard to walk, speak, eat, swallow, and breathe. These problems can lead to injury, illness, and eventually death.
My 80-year-old mother was diagnosed thirteen months ago, two years after she first began to exhibit symptoms – in her case, difficulty speaking and slurred speech. Since her diagnosis the disease has progressed rapidly. I moved in with her to act as her caregiver in June 2010, and at that time she was walking with a cane, driving, and living more or less independently (although she needed someone to help her out around the house, which is why I moved in with her). Today, seven months later, she is only able to stand for a few moments at a time and cannot walk more than a few steps. Her days and nights are divided between a power wheelchair and her bed. Her fine motor capacity – the ability to, say, type, or hold a fork – is almost gone. Her speech is almost gone. Her ability to swallow is almost gone, and she receives the bulk of her nutrition and hydration via a feeding tube. Because her diaphragm no longer works as it should, she breathes with difficulty and has to use a breathing assistance machine called a bi-pap at least 14-16 hours each day. She cannot go to the toilet without assistance and has to wear adult diapers at all times. She can’t stand long enough or step over the three-inch-high ‘lip’ to get into the shower and so now only gets sponge baths. All of this has happened in seven months.
My job as her caregiver... what can I say about that? Mom’s friends, of whom she has many, come to visit her and tell me that I am an angel for taking care of her. They tell me that it’s such an honor to be able to care for a dying parent. They tell me that I will be greatly rewarded for my service to her. I smile and think, A) I am no angel, just someone whose conscience has forced her to do the right thing by her mother; B) this is not an honor, it’s a burden unlike any I have ever had to bear in my life; and C) I have no expectation of reward either in this life or any other. That’s just not how things work.
Certain things strike me, sometimes very forcibly, as I expend increasingly greater amounts of time and energy assisting and caring for my mother. One of these is the degree to which able-bodied, healthy people take their able-bodiedness for granted. As I sit here typing this, I have, in the past ten minutes or so, taken several sips of water from the glass sitting on my desk. I’ve shifted the position of my feet on the floor and fidgeted around in my chair. I’ve turned to look out the window. I’ve scratched an itch on my shoulder. I’ve removed my reading glasses and wiped them clean, and then put them back on again. None of these things – not a single one – are things that my mother can do without assistance, if at all. She has to ring a bell (unless I’m already with her) and then she has to communicate to me what she needs, and then I have to do it for her. The simplest acts can be unbelievably laborious and time-consuming. Here’s what it takes to, for example, get her out of bed in the morning:
- Retrieve her walker from the corner of the bedroom and bring it to her bedside.
- Retrieve a washrag from the drawer and put it on the walker (this is for wiping her mouth as she drools pretty uncontrollably much of the time).
- Pull the blankets off the bed and remove the half-dozen pillows that are tucked around her body.
- Use the remote to raise the head of her adjustable bed.
- Reach behind her back and lift her into a sitting position, and swing her legs off the side of the bed.
- Remove her breathing mask with one hand while supporting her body with the other.
- Help her stand.
- Help her walk ~15 feet into the bathroom and help her get turned around.
- Pull down her pajama pants and her adult diaper.
- Help her sit down on the toilet.
- Remove the diaper and get a clean one.
- Fetch an adult wipe cloth and Vaseline.
- Help mom get herself wiped and vaseline’d (diaper rash prevention).
- Put on her clean diaper and clean pajama bottoms.
- Help her stand.
- Check her legs, thighs and buttocks for signs of bedsores.
- Help her walk to her wheelchair.
- Turn on the wheelchair and help her sit down.
- Place her feet on the footpads and adjust the legs out a little, then help her scoot herself back so that she’s fully on the chair.
- Put a pillow behind her back, one under her lower legs, a neck pillow around her neck, and a small pillow behind her head. Adjust pillows until she’s less uncomfortable (this can take a while).
- Put a lightweight blanket over her lap.
- Run warm water into a container for flushing her feeding tube. Crush aspirin and add it to the water; fill a syringe and flush the tube.
- Set up her liquid nutrition (itself a process of some 10-12 steps that I won’t bother with here) and start it running through her tube.
- Fetch a washcloth and wash her face; put moisturizer on her face.
- Brush her hair.
- Brush her teeth and rinse out her mouth.
That’s just getting her out of bed. It takes well over an hour to accomplish all of this. Getting myself out of bed? I just do it. I throw off the bedclothes, I put my feet on the floor, I get up, I go to the bathroom... I just do it. I don’t think about any of it; it’s all done pretty much on autopilot. My mother doesn’t have autopilot anymore. And did I mention that she is 150 pounds of basically dead weight?
I don’t bathe her; a part time caregiver/helper comes five days a week for a few hours. She gives me a chance to take a break for a few hours to take care of other household responsibilities and try to get a little personal work done, and she takes care of all of the bathing duties as well as housework and laundry for my mom.
I do get up at night, sometimes as much as four times a night, to turn my mother over in bed. This is necessary to try to prevent bedsores and to try to give my mother some relief from the discomfort of lying in one position for hours at a time. She’s uncomfortable all the time, day and night. This afternoon, for example, there was a period of a couple of hours that she called me at least once every ten to fifteen minutes to come and either move her or adjust/remove/add pillows because she was so uncomfortable. And nothing I did helped. As WebMD says, "certain" nerve cells are dying -- the ones that her brain uses to tell her muscles to move. But other nerves still work just fine, the ones that tell her brain that she’s in pain. And her mind? Pretty much as sharp as its ever been, but now it’s locked into a body that can still feel, but that can no longer move.
It’s a vicious, vicious disease.
Something else I find myself pondering a lot, especially at night when I can’t sleep due to having to get up so often to assist my mother is the so-called "sanctity of life". This is probably going to sound a little nuts, but I think about my beloved cats that I’ve decided, usually with great pain and sorrow, to euthanize when their quality of life and/or degree of suffering, due to advanced age and/or disease, has no longer warranted keeping them alive. I am thoroughly racked with guilt when I make these decisions, even when my own common sense, and my veterinarian, are both telling me that it’s the right thing to do. "You’re giving her a great gift,", my vet will say, "the gift of relief from suffering." And it’s true, I am. It’s not wrong, even though there’s some part of me, some brutal Calvinistic holdover from childhood Sunday School classes perhaps, that whispers that I’m committing murder, that whispers that I have no right to violate the sanctity of life by acting to end it – not even a cat’s life.
So now I ponder my mother’s condition and I wonder about that ‘sanctity of life’ thing, that religious and cultural norm that says that life should be prolonged rather than cut short, even in the face of terrible illness or injury. I have no answers, but that doesn’t keep me from pondering it pretty much every day. All I can do for her is try my best to keep her as comfortable as I can, even though I know I’m failing to even do that much. There is very, very little left in her life that she takes any pleasure from.
And so we wait, she and I, for her to die. I have no earthly idea how long it’s going to take for that to happen. The only thing I do know is that, as bad and ugly and painful and miserable as her life (and, to a lesser extent, mine) is right now, it’s only going to get worse. And there is nothing I can do to spare her that. I find myself wishing at times that we lived in a state that had a death-with-dignity law. I would never force such a decision on her, but sometimes I think she’d be glad to have that option available to her. I know for a fact that I’d like to have that option available to me, if and when I’m struck with some disease that robs me of my quality of life and brings me suffering. Oh well – if no such option is available to me, there’s always suicide. And I quite honestly would far rather commit suicide than go through what she’s going through - especially knowing, as I do, that no one will care for me as I care for her.
I can’t sum this experience up in a single diary, nor can I make a nice neat list of all the things I’ve learned as a result of this experience. This is just a small sampling of the life I lead, the things I deal with, the observations I’ve made and the questions I ask myself. I’ve not even touched upon the ongoing bloody nightmare that is the US healthcare "system" and how horribly broken it is, even when the patient has insurance (in this case, Medicare), although I’ve written about it elsewhere.
I’ve not touched upon how much it sucks to have been left twisting in the wind by two siblings, who have both left me to deal with this on my own, who can’t even be bothered to pick up the phone to say hello and ask how things are going. Mother’s friends say to me, in a comforting tone, "This happens all the time, dear, it always falls to the eldest/the daughter" – as if that somehow makes it okay. It’s not okay. I say now to everyone who reads this diary, that if you are the adult child of a dying parent and if you are not stepping up to actively help in that parent’s care in any way possible, if you are sitting by and letting one of your siblings shoulder the entire burden – well, unless that parent or that sibling is a mass murderer, a molester or an abusive alcoholic, there is no excuse for what you are doing. My mother and I have had, for most of my life, a relationship that I can only describe as difficult, but I consider that insufficient excuse to abandon her now. I do what I do because it is the right thing to do, because it’s what my conscience requires of me. So, I now consider myself to have no family. Once my mother dies, I will be alone. There will be, there can be, no forgiveness for what my siblings are doing.
I’ve not touched on how utterly tenuous the social safety net is for people in my position. I don’t receive compensation for this 24/7 job; I live, along with my mother, in her house, on her pension. Our part-time helper is paid out of my mother’s rapidly-dwindling savings account. There is no way in hell I could possibly hold down a job and do this, not even with part time help in the house. I try to keep a small part time consulting business going from home, so that I won’t have a ginormous gap on my resume when the time comes for me to try to re-enter the workforce, but finding even a couple of hours a day to focus on work is difficult at best. Medicare doesn’t pay for "custodial care". It has to be "medically necessary". And I can point out till doomsday that it really is medically necessary for my mother to be provided the care that I give her, because without it, she’d suffocate, or starve to death, while lying in her own body wastes. Doesn’t matter. What I do doesn’t count as far as the health care "system" is concerned.
And once my mother dies I am going to have to start all over again, in the worst economy imaginable, and at an age that people tend to be discriminated against by potential employers when job-seeking. I have no idea how I’m going to survive in the long term. None.
I don’t see a happy ending to this story. I know there won’t be one for my mother. And I fear there won’t be one for me.
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