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.

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Comments

View Comments (5)
  • alchemie
    5 years ago

    Thanks for sharing your story. I’m so sorry about your mom!!! I lost mine back in 2005 (2 days before mother’s day), and then my father in 2011. I wasn’t even 40 years old yet when both of them passed. My mom was hospitalized for 3 months before she left this world unexpectedly. She was supposed to be getting better. Long story. My father’s death was even more of a shock (heart attack), and I wasn’t in the country when it happened. Unfortunately, now I’m taking care of my daughter, and I help my sister a lot as well. Both have mental illness, and I have MS too (diagnosed in 2006; a little over a year after my mom died). Its been a rough life for the past few years, not only for them but for me as well. A lot of the time, I feel like I should be the one who is taken care of. No rest for the wicked 🙂 Anyway, like someone else said, try and enjoy the time that is left with your mom. You will cherish it always. And if you can, take lots of pictures and videos. It was something that I never did and now regret. My mom lost her ability to speak 2 months before she died. I regret not having a video camera and being able to make home movies or something. I still miss her a lot and the silly things that she used to say.

  • Susan
    5 years ago

    Kim~
    I read your post above & my heart breaks for you. I have been a nurse for 24 years, but had to “retire” in 2010 due to MS & Fibromyalgia; I still keep my RN license active however. I have gone down this road with many families. My mom is 82 and although she isn’t terminal, as your precious mother is, she does have end-stage heart failure. She also has ever-increasing “spells” where she fades out, her blood pressure and pulse go very low..it is called a vasovagal response if you want to Google it. The doctors have told us that she will probably have one of these spells and not come out of it. My family & I live in a second home on my parents property. My husband has MS as well. My dad is 76 and very healthy, thank GOD. He is able to keep her at home with home health services and extended in-home care assisting with her. My husband and I help out when and however we can, which is limited due to our own physical challenges. So, I can relate to you on some levels.
    I also have an 18 year-old son who is graduating from high school this year. Things are busy with all the end of the Sr. year activities and getting all his college things in place.
    The only way I possibly cope with this season of life, or any other for that matter, is my faith in JESUS CHRIST as my personal Savior and LORD and I rely on Him to help me. I wanted to know if you have a spiritual or faith background to help you through difficult time?
    I pray for comfort, peace, grace, and unity in your family in the Name of JESUS…Amen. <3

  • bulldogman
    5 years ago

    Kim my heart goes out to you in this difficult time. Try to enjoy the time you have left with your mom. Remember she will always live on though you in your heart and mind.
    Steve

  • Rendeanne
    5 years ago

    Dear Kim,

    You have hit the nail on the head on all aspects of the trials of dealing with a parent’s passing. From the sibling conflicts to the internal conflicts and what you know you will miss or are missing right now, such as, having a long meaningful conversation or asking a question about to make or do something just way she used to do it in the kitchen.

    My heart goes out to you and your sorrows and conflicts are fresh in my mind. Just remember the good times and the wonderful relationship the two of you developed and keep those precious memories close at hand. <3

    Brenda

  • Sonya
    5 years ago

    Kim,
    There are no words that do justice for this part of lifes journey. Please know that my heart goes out to you & I will remember you in my prayers ♥
    Sonya

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