What Happens After Tomorrow? Planning for the Unplannable

This is a tale in two parts.  It’s about getting sick and/or old and not being able to care for yourself.  Part One is about my mother in the last years of her life.

My mother was a hale and hearty woman, the only member of our family who worked out regularly, didn’t smoke (anymore) and had the single daily cocktail the experts now recommend for women.  I fully expected (actually, I demanded) that she would live forever.  So when she told me she was getting something called Long Term Care insurance, I was perplexed and not a little annoyed.  That she would pay for insurance in case she got sick seemed like she was planning to get sick.  Where was the power of positive thinking she had always espoused?  And where, for heaven’s sake, was the woman whose parsimonious spending habits were formed during the Depression?

I didn’t get it, but it wasn’t mine to get she told me in those ‘no uncertain terms’ voice of hers. Even healthy, or perhaps because she was healthy, she wanted to make sure that she was taken care of, protected, when the day came that she couldn’t do it herself.   My parents had both been from the school that Life Insurance is a necessity, and this was just one more form of it a person had to have. So I was polite when the agent came to sign my mother up and even somewhat gracious when adding my signature as Witness to the form.

Some years passed and with time and age, my mother’s feelings about her financial security changed as well.  She started to keep things close to her, to not want to throw away cracked cups and shirts that were somewhat shabby.  And she started wanting to keep her money close as well.  It was during that time that she told me she was dropping the Long Term Care insurance.  I didn’t pay much attention because of course I hadn’t thought it was important in the first place.

Then my mother got sick.  Colon cancer. The time from her diagnosis to her death was only several years, but it became another lifetime for me. When the doctor told me my mother had cancer, my response came without thinking, “She brought me into this life and I’ll take her out.” So I left the PhD program, my dissertation and my teaching position in Pennsylvania to move back to California to be close to her. The voice in my head throughout all this was my late father’s: Take care of Mom, he kept telling me over and over again. Take care of Mom.

When I could see that living in the same city wasn’t close enough to care for her, we bought a duplex so my husband and I could live on one side and she on the other.  Suddenly I was in an unfamiliar role: parent to my parent. It wasn’t a good fit. Even worse, my mother was still very much my mother, so there was a dual relationship going on. We were each at times operating as the parent and/or as the child. A lifetime of reifying my mother’s words and wishes made me hesitate whenever I had to step into that parental role, A lifetime of being obeyed made her resent my usurping that place. The situation deteriorated along with my mother’s physical and mental state and finally, it was time for my sister and brother-in-law to step up.

My parents had been caretakers for my brother-in-law’s mother in her last years, so there was precedent for his taking on the financial responsibility for my mother’s care. The four of us met for dinner at a restaurant in a beach town midway between their house and ours. There we agreed to the following: I would take total responsibility for the day-to-day care of our mother; my sister and her husband would pay for any and all help. That sounds cut and dried, but in fact, it wasn’t.

Balancing my mother’s condition and her need for care with her need for autonomy and some quality of life was never easy. There were days when my mother was her old self, and I thought, “I can do this.” Like the day she called me into the garden, to deliver her pronouncement on her future: no chemotherapy. Instead we would spend her remaining time “making memories.” Some days this was possible; other days we would get trapped by the vagaries of her condition. We’d get all ready to go somewhere, but the effort would exhaust her. Or we’d actually get somewhere, like a family dinner at a restaurant, but midway through the meal, her condition would worsen and we’d have to leave the party.

When she began to need help during the night, we hired a nurse’s aide. And then that help became a twenty-four hour thing. There are agencies that furnish these aides, who are on the lowest rung of the health care ladder. These women have left their families in the Phillipines or Asia to care for ailing Americans, and predictably some of them are excellent, and some not so much. Tonya was the aide who was with my mother the longest, the one she and I trusted the most, the one whose name I still recall. I was grateful to her and the other aides because they did things for my mother that I couldn’t do. In that, they allowed me, for the most part, to be the gracious and warm and loving daughter I wanted to be.

When hospice began, another load of workers came and went on my mother’s side of the duplex: doctors and nurses and social workers and spiritual advisors. My mother hated the latter. I think basically that she was pissed off that she was dying, and she didn’t want anyone to interfere with the way she intended to go. My mother was like that, strong-willed, determined, used to being in charge.

My mother died some two months after the doctors had given her one week to live. I knew she had long had a fear of dying alone, so I sat at her bedside, held her hand and just talked her. I told her how much I loved her, what a terrific mother she had been and how much I would miss her. I told her it was time for her to go. I was ready; she was ready. When Tonya tried to give her morphine, my mother closed her mouth tight, and I had to laugh. She was, as always, doing this on her own terms. Eventually she stopped breathing.

I lay down beside her for what I knew would be the last time. I was crying, yes, but I was also jubilant: I had done it; she had done it; we were, to the end, a good pair. What I was also certain of at that moment was that my mother, who had guided me through all the major events of my life, had just taught me the final lesson: how to die, and how not to be afraid of it.

Since then, I’ve realized how much of that was made possible by my sister and brother-in-law being able–and willing–to foot the bills. They were, in the end, my mother’s Long Term Care insurance. While I’m not, thanks to my mother, afraid of dying, I am aware that I don’t have the family resources she did–and that’s scary.

 

Am I the only one starting to think about how I’m going to live when I can’t care for myself? Tell me where your thoughts on on the topic. Did this post make you want to close your eyes and go to the next blogger? Or do you already have some idea of what you’re going to do. I’m looking for ideas, and next month I’ll write about what I’ve found out, what I’m afraid of, and how I feel about the whole topic.. This post was sponsored by Genworth Financial.

 

  • http://boomersberg.com Snarky Boomer

    My personal experience both with long term care insurance and a dying parent and care giver. The long term care insurance was not a good experience, so I would advise to be very careful with choosing a plan/timing- etc. Best planning you can do is to plan way ahead. Look at alternatives of living in communities that have support for aging. As in sell your home and move to a senior type community. Have a home that is equipped with rails, wide halls, ease of access. Alert systems or monitors. Something as simple as having the money set aside for someone to come in once a day- cook one meal, set up for breakfast, set meds into a timer dispenser and tidy the home. These things all depend on the degree of care needed. So if you plan to get old (let’s hope so) you better plan to need some assistance sometime and some point.

  • Joanna Jenkins

    Jane, You did a beautiful job with the post and a wonderful job with your mom. I know that delicate balancing act and I’m so glad you were there for her.

    As for longterm care insurance. At the moment I am thanking the heavens that my folks were 100% on board with this and covered. In March we started the process of moving my folks into a senior living facility with a continuum of care. Their longterm care insurance is absolutely why they were accepted. Without it I honestly don’t know what we would do.

    That said, my sweet step-dad passed away unexpectedly last month and never needed his fairly expensive longterm care insurance. But…. and this is a big but… I KNOW he passed happy knowing my mom would be taken care of
    “no matter what” as her insurance premium will always be paid by his estate.

    My husband (age 71) has longterm care insurance too. He got it during the time his mother was in a skilled nursing facility with Alzheimer’s for nine years. She did not have the insurance and he paid for her wonderful care.

    I’m 53 and thinking very seriously of getting it now. So yes! This is an excellent post. I’m going to guess that there are quite a few readers who don’t even know this kind of insurance is available since so few of my 50-somehting friends are aware of it.

    I’ll be watching for your follow-up post. jj

  • Lee Hill

    A very thought-provoking article; thank you.
    As a woman with a now-elderly Mother, I know that we will one day face the same role-reversal you spoke of, and it won’t be easy. My Mom is also a very determined, very independent person accustomed to self-sufficiency; I worry about how she will fare when she is no longer able to do everything for herself. And, although she has also gone to great lengths to provide for her financial and medical needs, the reality is that you just can’t plan for everything.
    It also makes me wonder what my waning years will hold, as a woman with no children and no other family who will be living when I reach my golden years. The thought of wasting away alone in a nursing home is frightening, but it will likely be my fate, so I’m doing what I can to prepare myself for that.
    Again, thank you for a very touching and insightful article.

    • Jane

      Lee,

      Your comment touched a nerve with me as we’re in similar situations: no kids, no available family. That’s what I’m writing about for next month–I hope you’ll come back for that.

      btw, my mother’s name was Lee!

  • Darryle

    This was hard for me to read for many reasons, especially right now since I’m dealing with some of these same issues, only not for my own parents who are both gone. I almost envy people like you who have the chance to have some closure. I think our society finds this such a hard topic to discuss or even think about—and applaud you for doing it.

    • Jane

      Darryle,
      My family thought the way we hide from death was silly–not saying someone is dead…”they’ve passed” or “we lost him.” The latter would bring a reply from my father — ‘well, you were careless; go find him.’ So talking about and facing their deaths came naturally to me. But not to my sister….

  • Shani Ferguson

    You are an awesome daughter, and a damn fine cousin, as well!

    • Jane

      And you are both as well!

  • http://www.facebook.com/profile.php?id=833203057 Nancy Syzdek

    You’re a strong and brave daughter. I’m sure your mom appreciated what you and your sister were able to do for her.

    I’m very fortunate that my employer provides long term care insurance for employees and we can sign up our parents and in-laws as well. Unfortunately my mom’s application didn’t get approved because of her past smoking habits. Having been through a health scare with my dad, I’m so thankful they are well insured in spite of not having LTC coverage.

    • Jane

      Nancy–
      Your employer must be incredible! Kudos to them. Is this not out of the ordinary? Considering that so many employers don’t offer health insurance, offering LTC insurance is really amazing.

  • Kim Prince

    This post makes me want my mother.

    • Jane

      Me too….

  • Duchess

    such a well-written, lovingly told story. I sometimes wonder what I will do without my mother – and what my children will do without me. It was brave of you to write as you have.

    • Jane

      Thanks, Duchess. I never could imagine what I would do without my mother which is why it was so important for me to tell her she could go.

  • http://profiles.google.com/cecfielding Cecelia Fielding

    Beautifully put. I, too, had to help my mother through her death, and my well-off brothers helped make her final years very comfortable. My husband I and I have good insurance (for now), and we both opted for additional extended care insurance. But I am worried about how the current economy and changes to health care and Medicare costs will affect us. I didn’t think it would be so complicated and so tenuous.

    • Jane

      Cecelia,
      At midlife, we’re in some holding pattern. Just on the edge of being able to see a time when we’ll have to do something…but not yet enough there to feel motivated.

  • http://aroadwithaview.com Jennifer

    It’s on my mind, too. I’m glad you shared your story. there’s so much grace and dignity in your telling of it.

    • Jane

      Those are words I value from you, Jennifer.

  • Lee

    Thank you for sharing this. Like you, I, along with many of my friends, are finding ourselves in the position of caring for elderly parents. It’s difficult, it’s heart-breaking and it’s the most amazing thing any of us ca do for them. I’m glad you and your family were there for her.

    • Jane

      Lee,
      You can see why your blog posts about your parents several years ago hit such a chord with me.

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