Flip Flop, Part III: When an MS Patient Becomes a Caregiver
My mother, who is dying of stage 4 lung cancer, has been in a hospice facility for a month now. It’s the end of line.
I cared for her at home during the entire month of January, sending her, at last, to the ER in early February to have the testing her doctors hadn’t ordered. Immediately diagnosed with terminal lung cancer, she was then transferred to another hospital where she underwent brain surgery, PT, and radiotherapy. After a month she announced that she’d had enough and wanted hospice care.
Mom is happy and settled in. One of my sisters lives close by and I live 20 minutes away. She and I take shifts being with mom every day. We have tracked the changes, the latest one being her need for morphine. In just a week, she went from a minuscule amount of Roxynol once a day to a higher dose several times a day, along with Ativan. Her appetite has diminished and she sleeps more. A nurse said today she might have two weeks, perhaps four if she rallies. The nurse has seen it happen; a patient is at death’s door, then there is a sudden uptick, a renewed vitality. They might hold out until an absent loved one comes to visit, or for any number of reasons.
Dying is not an easy journey. I see my mother retreating farther inside herself to conserve energy for however her body is pushing through its own protocol of shutting down its systems. Often she withdraws to cope with pain, something she has always done. And then she is yanked out of herself to listen to us and to respond, and to make decisions about things that belong to the world of the living, a world in which she still maintains a strong foothold.
For example, mom must decide on the menu every day. She still has an interest in food and looks forward to every meal, every snack we bring her. She also has the occasional urge to smoke, which I indulge. The nurse bundles her up and wheels her outside, and I give her one of my cigarettes. Not often, she’s only done this three times over three weeks. The last time she told me it wasn’t as satisfying as she’d hoped. “Can you taste it, mom?” I asked. “No, I can’t,” she said. Losing one’s sense of taste is another sign of decline.
Then there was the matter of a will, which mom had never addressed. Last week, my sister and I scrambled to put one together on LegalZoom and went through each question with mom. We knew pretty much what should go in it, and she was very clear-headed about recalling and making known her wishes. There wasn’t much to consider, really. Mom is poor and her only asset is her house. I called my credit union to ask a notary to come to the hospice facility, and we easily collected two witnesses. The will is taken care of and mom is happy about that. The cremation is paid for, she signed off on her 2013 taxes and I have paid the accountant his fee. No more unfinished business. For mom, that is. For the rest of us there has been and will be plenty to handle after mom passes.
Even the closest-knit families can fall apart when a parent dies. Serious conflicts can arise among siblings. Grief can bring out old resentments. Words and deeds can damage some relationships for good. I never thought it would happen in my family, but it has. Our conflict has been a much larger source of stress than our grief over our mother’s dying. But we show a united front when we are with mom. We are together in making her feel comfortable, loved, secure, and as pain-free as possible.
My own struggles with losing mom are many-faceted. I lived with her for over twelve years. We had a unique bond that deepened over time. We looked after each other. Her home is my home, I still live in it and will do so until it is sold. After my very brief marriage ended in 2012, I moved back in with mom. We were grateful to have each other. I told her I’d never leave her again, she’s too old to be left alone. We all thought she’d live another ten years and I was prepared to be there for her until then.
There were immediate adjustments I had to make once she left home and went to the hospital. I was alone in the house. I couldn’t go to her and have an impromptu conversation about what was going through my head or about someone’s email I had just received. So I started talking out loud to myself. My day became instantly unstructured; I had been caring for mom for five weeks. Suddenly I had nothing to do. Then the family conflict began, which caused me great emotional and physical distress. Whenever something like that has happened in the past, I would confide in mom for clarity and comfort. But she wasn’t there. I had no one to go to who has known and accepted me like she has.
My MS has not flared up during this crisis, stress has never been a trigger for me. But it has taken its toll. After having spent six hours a day, seven days a week at hospice, I finally cut myself back to two hours a day with one day off. I spend my time at home in bed for the most part now, with several hours at the computer and some time doing dishes and household stuff. Fatigue and brain fog are my constant afflictions.
I try not to think about the future, but the tremendous, life-altering changes mom’s death will bring me do crowd my thoughts every day. I will have to look for low income senior housing and find a tiny apartment. I have never lived alone, always with a husband or family member. My independence as a disabled person will be put to the test more than ever before. I worry about whether I’m up to it, whether I’ll withdraw and disappear, or thrive and become happier than I’ve ever been. I’ve already experienced years of withdrawal and depression, followed by years of productivity and contentment. It could go either way. I know myself too well not to wonder.
This crisis has reminded me how little control we really have in our lives. My feeling of helplessness, of being sucked in by raging flood waters and forced to allow the current to pull me along or under or allow me to stay afloat has me staring down into the murky depths too often these days.
Spring is struggling to make an appearance, though, and I have heard a robin’s call in my backyard for several days now. The warming of the earth will nourish me, I’m sure of that. But right now, March is still in like a lion.
Have you ever experienced any of the following financial struggles due to your MS?