My mother is in the end stages of ALS, aka Lou Gehrig's disease. It's as awful as you think it is. There was a time period where we thought it was ALS, then she was told it was Multiple Sclerosis, and we were like, crying tears of joy and relief. It's just MS, thank God! But then she got a third opinion. Doctors hesitate to issue death sentences and therefore hesitate to be definitive with this particular diagnosis, but it was confirmed to be ALS.
My mother is hilarious. When something good happens to her these days -- like she got a big tax refund because she had thousands and thousands of dollars in deductions because of all of her medical expenses -- she smiles and delivers her favorite punchline, I'm so lucky.
Having an awful illness really does make you courageous. It's something people say, oh she's so courageous to battle this disease. If you're on the inside, part of you cynically thinks, well, what else is she going to do, give up and die? But then on the other hand, it's probably true that we human beings do have a lot of courage. The simple fact we don't give up and die proves it. So yes, my mother is courageous.
The frustrating thing of course is that I didn't need this stupid, awful illness to show me that -- I already knew that from the way she has always lived her life, a loud-mouthed, opinionated, brilliant thinker who challenged the utter stupidity of prejudice in countless ways as a mother, teacher and small-town activist. She raised two feminist daughters who believe that our identities, happiness, bodies and minds have value -- no small feat in our culture.
I'm 39, and I think about the fact that she finished her PhD after 40. Who does that? Who believes strongly enough in themselves to finish college *after* they have kids, then goes on to pursue a PhD in their 30s -- finishing just as her kids enter adolescence? Who has the self-confidence to agree to pause her tenure-track to apply for an interim Dean position, when the University President takes notice of what an outspoken and kick-ass leader she is among the faculty? Then, accepts the permanent position, making her the first woman Dean of the College of Arts and Sciences at Western Illinois University. Then negotiates an awesome golden parachute during a later regime change, securing a cozy retirement for herself and showing the rest of us "this is how it's done, ladies."
Who does that? My mom.
So, I've put my life on hold to help care for her. I took a formal leave of absence from my work, after calculating that we can survive on Kevin's salary for a few months. I spend about equal amounts of time with my mother and her parter in Illinois, and with my family here in Cambridge, doing my best to keep up with the emotional, educational, financial, and therapeutic/medical needs of my children. Although traditionally I love my work, it's easy not to work when my mother's needs are so much greater. It's very, very hard to be away from my kids. I am grateful to have a husband who is a true life partner and keeps the homestead humming along while I'm away. I'm grateful that my sister and I can take turns so my mom and her loving, amazing partner Jim are less alone in this "end stage."
Everything is on hold. The kids aren't doing activities because it's too crazy to keep up. I'm not working, and don't volunteer for the kids' school if I can avoid it. All I do is focus on taking care of my children and taking care of my mom.
When I'm in Illinois, I spend a lot of time sitting with her while she sleeps. She sleeps in her power wheelchair because she can't reposition her body and her back begins to ache terribly if she tries to lie in bed. Her bed is adjustable, but her wheelchair is customized and has a lot more ways you can move. Among its cruel ironies, ALS paralyzes you but does not take away your sensations. You can think and feel as always. So if your foot has become twisted, you can't straighten it out. ALS has also robbed her of her ability to speak, so she makes noises and points - thankfully she can still move her arms - until you work out what is causing her pain and help her fix it. When you relieve her pain, she has to lie back, exhausted from the effort to communicate.
It's ok to leave her alone while she sleeps, but it scares me to think of her struggling, alone, unable to call for help. Jim takes incredible care of her, but he needs to be able to leave the house sometimes. She is utterly dependent on others despite holding onto every last ounce of independence that remains: her ability to make decisions, to type a message on her iPad, to drive her wheelchair, to lift a strap on one of her medical devices. Jim, my sister, and I have to be a team - supported by friends, my sister's husband and mine, the hospice nurses and my mother's neurologist - in caring for my mother.
I help her administer medications. She has some regular pills she takes, which we crush and dissolve in water and inject through her feeding tube. Feeding tubes sound invasive, but hers is just this little rubber hose with a nozzle on the end that goes into her belly, held in place by a plastic disc. I insert the end of another plastic tube into the nozzle, and formula flows through from a bag containing formula -- like what babies get but formulated for adults. She does feedings twice a day, napping and watching tv, or checking email while she is nourished.
I help her get her biPap machine on -- her arms have recently grown very tired, and when she tries to pull the headstraps back over her head, sometimes she has to stop to rest because it is so exhausting. I help get the back part, and she positions the nose piece. Although she prefers to have Jim help her with her most personal bodily needs, sometimes I help her to use the bathroom. They installed an expensive, un-insured piece of equipment in their bedroom and bathroom which is the primary reason she is not in a nursing home: an electric lift. With the push of a button, we lift her in her sling out of her wheelchair and slide the sling along a track in the ceiling so that she can then be lowered onto the toilet, or between her chair and bed. The only time she gets into bed is to have a sponge bath. It's too hard for her to sit up on the shower chair they were able to use for many months.
I also help her use these foam swabs to apply a medication inside her mouth, because she has thrush -- a yeast overgrowth caused by being immunocompromised and unable to swallow. It's also exacerbated by the nebulizer treatments she has to do to maximize her airways. I help her with the nebulizer and this thing called "the vest," which provides percussive rattling to her ribcage to loosen up secretions that build up because she cannot effectively cough.
I give my mother morphine and ativan to help calm her body and make breathing feel like less of a struggle. My mother does not want to go onto a ventilator, and her particular course of illness is causing her diaphragm to be slowly paralyzed, which will eventually stop her breathing. Her lungs are healthy; she could get pneumonia from aspirating liquids, but more likely her perfectly healthy lungs will become nearly motionless. She will stop being able to pull oxygen into them and expel carbon dioxide from them. She will go into a deep sleep and then she will die, and I will miss her terribly.
So, I have put my life on hold. Holding implies an uninvited pause -- an in-between space. Sometimes it feels like the opening scenes of The Graduate, where Dustin Hoffman is gliding along a people mover inside an airport -- in between terminals, in between college and real life, floating along, in between. Being on hold with health insurance companies and healthcare subcontractors has been a major activity of mine since my mother became unable to be understood on the phone, and it is sometimes frustrating. Some days feel like that, like when I'm sitting at home in Cambridge in my pajamas, wondering if I should be doing something different than watching reality tv and folding laundry.
Other times, when I make my mother laugh,
or she types into her iPad something really helpful like, "I need you, but your family needs you too. Go home to them" -- I feel the other sense of hold. I feel held by her love, even as she grows weaker. And I know that my love -- and the love of her partner, my sister, and her dear friends -- are holding my mom. This cocoon that illness has woven for us blocks out the light, but it also sustains us.
