I Wasn't Hearing That So Nicely For So Long

Last night I found a note I’d written to myself at least two and maybe three years ago, at the end of a beach vacation.

The ocean’s so vast – we can’t imagine it fished out.  Mom has been with me so long – I can’t imagine I will lose her. We don’t want to imagine these things. We tell ourselves all is okay even in the face of blatant evidence to the contrary.

Z contemplates life, the universe, and everything

Z contemplates life, the universe, and everything

I knew, from the moment we first got the diagnosis of congestive heart failure for mom, that we were at the beginning of the end. I knew that CHF could be managed, but not cured. And even if it could be cured, there is no cure for life. I knew but as my father-in-law says when we offer information he is not thrilled to receive: “I don’t hear that.”

This was maybe in 2004.  As one does, I resolved to treat time as precious. Resolutions waver, especially in the face of one’s own chronic illness. I often think about the four relatively good years of mom’s life that I let slip by.

In the summer of 2007 she expressed a desire to go to Cape Hatteras once again. It was a family vacation spot with many happy memories.  My younger sister and I managed to take her there for a week in September. We did everything. She didn't even want to wheel by a little yellow flower without a closer look.

The flower she couldn't pass by.

The flower she couldn't pass by.

One night she had food poisoning from some bad shrimp. We feared that she would be out for the rest of the week; I knew how long a similar bout would knock me down. The next morning she up was up, ready, and determined to go. Perhaps she knew this would be her last vacation trip ever. I thought it would be her last. But I didn't hear that.

Happy feet at Hatteras

Happy feet at Hatteras

 

It was January of 2008 when she moved into assisted living.

I became her power of attorney and as time went on, became ever more intimately involved with her affairs and her life. She called me often, sometimes several times a day, and left little voice messages if she didn’t catch me. Suzanne, it’s me, I just called to talk a little bit. Okay, I’ll talk to you later. Bye-bye. Suzanne, it’s me. I just called to see if you’re watching the Steelers. Okay, talk to you later. Her Reader’s Digest subscription needed renewal; send a check to the KDKA Turkey Fund at Thanksgiving; donate to the Red Cross for the Haiti earthquake or the tsunami in Japan.  She would remind me to pay the hairdresser at the assisted living home, tell me to buy a lottery ticket when the jackpot got high (“and one for yourself!”), and ask me to “bring some extra cash” the next time I visited, to pay for some handmade cards purchased from a friend.

Her health status oscillated, each time the peaks scaling a little less height, the troughs diving a little deeper.  The cane left at home when she moved to AL; first a walker, then sometimes a transport chair or wheelchair, then almost always the chairs, while we were out and about. She said she dreamed of being at a home town wedding in the firehall, walking around and saying hi to everyone seated in the chairs around the edge of the dance floor, and I just walked and walked and walked! It was such a good dream! But it's never gonna be. I listened and I sympathized and I felt sad. Still, I didn't hear that, not really.

Last October she was in rehab; at the end of my visit, she tried to coax me to stay an extra day. In my mind I had to get back home for some damn thing. I'm not going to live forever, Suzanne she said. I really did not hear that.

Even as late as last Thanksgiving I was still not hearing so nicely. She'd gotten as strong as I'd seen her in years after a round of PT at the rehab facility and was so happy to be back at her assisted living home. She surely had at least another year yet. We had a glorious feast in her home with many family members present, and she tasted the pleasure of every moment. We made silly art sculptures from vegetable pieces and she laughed.

 

Thanksgiving spread at mom's house

Thanksgiving spread at mom's house

Veggie art

Veggie art

 

 

 

 

 

 

 

 

 

 

 

The next day she fell and broke her arm. In the ER she said to me "This ruins everything" and my heart broke.

I knew broken bones are often the death knell of the elderly; but I didn’t hear that. “It’s only her arm, not her hip” I soothed. “She will recover! It will just take time!” In the nursing home she experienced excruciating pain at the slightest jostling, and by Christmas she was a shadow of the vibrant woman she had been one holiday earlier. By the first week of January, when Dr. Bones pronounced her healed and said the sling could go, she didn’t give much of a good goddamn about anything.  Or perhaps more accurately: she would have given it, but she was clean out of goddamns, good or bad.

I knew for sure then that the end was very close, and yet, I was not having any hearing of that.  Maybe she needed her meds adjusted, or she wasn’t getting enough attention at the nursing home, or the right attention, or she needed to be encouraged more in rehab. Or a pony, or a unicorn.

One afternoon of the week I was to leave for Science Online 2013, waiting at a red light, I saw an unusual number of cars go through the intersection before me. I saw, but I didn’t see that. The light turned green and the line of traffic just kept on going through the intersection. One, two , three cars…what the hell…red light runners are so fucking annoying…I honked my horn. And then I saw that. I saw the last two cars with little flags attached to their hoods. Flags that said “funeral”.  Oh! Sorry, sorry, I mouthed, hands waving wildly as if that would both communicate my apology and magically ward off some kind of bad karma I had just created.

A few days later, during a meal at SciO13, my cell rang, and it was my younger sister. She told me mom had had what looked like a stroke, and she was having trouble talking, and they had taken her to the hospital for observation. I knew what that meant. And this time, I heard that. I heard everything my sister said, and some things she didn't.

I was on a plane the next morning and at mom's bedside by the afternoon. A few days later she had a grand mal seizure, and by the end of the week we had moved her back home with the help of hospice. Just one week more came the moment when I traded my role as power of attorney for that of executor. Tomorrow will be the half-year anniversary of the transition.

 

She lived a long life. I know how fortunate I am to have had that much time with her, to have been with her at the end, and for her end to have been in her own home as she had wished, as peaceful as we could make it. My grief is not exactly that she should have had more time in her life - not more years of increasing disability and sickness, for sure - but that she should have had more time in her life when I was more present, more respectful, more attentive to her as a person and not just my mom (but also my mom).

Some of you may know I wrote some things in her memory on Twitter; they are collected here in a Storify.

Thank you, dear Zuskateers, for reading this.

Z and Z-mom January 2007

Z-mom and Z, January 2007

 

16 responses so far

  • Jen says:

    I am so sorry, Zuska - while I still have my mom, much of what you wrote described how I dealt with my grandmother's final two years as she dealt with CHP and I dealt with denial that I could lose my beloved grandmother. You were a good daughter to your mom - I'm sure she knew that.

  • Carlie says:

    but that she should have had more time in her life when I was more present, more respectful, more attentive to her as a person and not just my mom (but also my mom).

    Oh, that is so important. And entirely what I think people actually mean when they say they want more time. Thank you so much for articulating that feeling so well.

  • jc says:

    The storify is beautiful... reminds me of my aunt. She loved her pierogies, her nails getting done, the Joan Rivers jewelry on tv, homemade sun tea, of course her rosary beads, and crossword puzzles for after dinner. Funny how it's all the little things, here and there, like trinkets around the house, that add up to patterns about a loved one's life. New meanings are formed. Your mom shared and made all those memories with you.... sunroof and roses and bananas.

    I made pierogies for my aunt's birthday. I cried, then ate the whole bunch. Her tea, however, came out like crap! Must try again. I wish I would have spent more time with her too, being present and open. I thought it was a hassle for her to make dinner and tea and clean up, but she lived for the hassle. She wanted the fuss. I get it now. I miss her.

    • Zuska says:

      "lived for the hassle. She wanted the fuss." oh yes, this.

      One of the very last things my mom was able to eat was a pierogie. It was the last thing she asked to eat, after she could no longer safely swallow solid food. I wish I could have given her the taste.

      Your aunt sounds so wonderful. Thank you for sharing.

  • Three years ago, on my birthday, I lost my grandmother, who was more like a mother nad best friend to me. I understand the pain that you're going through. Like you mention it on your, the hardest thing to grasp is the fact that nothing lasts forever, not even our superhero parents.

    Hugs!

  • Potnia Theron says:

    I appreciate your ability to put into words what many of us feel in hearts but lack the skills to say so well.

  • stickypaws says:

    I am very glad that you are still writing for this blog. Thank you.

    • Zuska says:

      I'm glad to be able to write again. I had to get this post out of me before I could write anything else again. I think writing will come a little easier now. Thanks to you and everyone else for still hanging in there as readers.

  • drugmonkey says:

    I had a bit of a moment recently where I can see the elder-care thing on the distant horizon. Your posts (and other venue exchanges) on your time with your mom will undoubtedly be helpful.

    thank you for that.

  • ecologist says:

    Thank you for writing this, and for sharing it. I wish that I had been there more, and been more present, first for my father and then for my mother, at the end of their lives. I tell myself that I did the best I could. I think you did too. And what you wrote here may help someone else to be more present in their situation, and that's something important and valuable. Thank you again.

  • Zuska says:

    DM and ecologist (and everyone who commented), thank you. You know, I write for myself, because there is something I just have to say. Then, I hope maybe someone else recognizes a shared experience or emotion, and feels less alone. And then, if someone gets out of my writing something that helps them going forward, that's really lovely. I am ever grateful for my readers.

  • Cara says:

    The day you wrote this post was the two-year anniversary of my mother's death.

    She died of a horrible, out-of-the-blue, fast illness, too fast to give her time to process it. She was only 64, never sick before that, no little ailments, no "female trouble". Nothing. Just this cosmic joke of an illness to take her life, for no good reason except that it was a twist ending.

    I heard. I heard the minute the doctor told her, when she refused to hear. It didn't matter.

    I stayed with her, cared for her, didn't leave her house. I couldn't--she couldn't be left alone. It didn't matter.

    I was there when the hospice nurse thought she was dying. I talked to her, lied to her, telling her it would only be a short time and everything would be better, it would be okay. She didn't die then. She rallied. The nurse said she'd never seen anything like it.

    I told the nurse I couldn't watch that again, couldn't talk her through or wait while she gasped for air with that panicked look in her eyes again. The next day the nurse arranged for her to go to the hospice house.

    She didn't die until later that day, and she waited until after I left the room.

    I honestly think my mother waited for me to go to spare me. The first time I really did want to be there for her, to do it right. But I felt like I did it wrong. I couldn't stand it. I couldn't help or fix it or do anything to make it okay, because it wasn't okay. There was no peace for her. It wasn't okay with her.

    I guess, Zuska, my point is that I don't think it ever feels like enough, because it's not okay to lose your mom, and your mom never wants to leave you.

    Thank you for writing this. Feel free to delete this response if you want, but know that as much as it hurts, the love does make it worth it.

    • Zuska says:

      I would never delete this response and I thank you so much for sharing it. "It's not okay to lose your mom, and your mom never wants to leave you." That's it, isn't it?

      I have heard so many stories now of how people have passed, witnessed two in the past year myself. The hospice nurses told us that the dying often wait for someone in particular to either be in the room or out of the room before letting go. My mother held on till the last of her children arrived at the house and made it to her bedside, then not long after that she was gone. My brother waited till he was alone with my mother, and when she told him it was okay for him to go, he took just a few more breaths and was gone. Hospice workers can tell many such stories. Perhaps it's all just coincidence and something we tell ourselves because we want to believe it. I don't think it's entirely coincidence, though. When death is not sudden or violent, it seems there is a real process and there is some way in which the dying person is, if not controlling, then navigating that process.

  • physioprof says:

    Your mom was extremely lucky to have had such a devoted, kind, and loving daughter as you.

  • chall says:

    Very well written and as others said before me, it is very good to read about your experience. She sounds like such a wonderful woman and I am sorry for your loss.

    My parents are still alive but I lost my grandmother with whom I was very close and all the small things, those smaller things I didn't really pay attention to before she passes made so much sense afterwards. The little change purse, the ring, the way she answered the phone everytime I called.... (and as we talked about one time, the Tussilago farfara flowers in a shot glass and Lily of the Valley (Convallaria majalis) that she sent to me since her part of the country had them before they opened in the spring where I lived...)

    Take care! And thank you again for writing and sharing.

  • bioephemera says:

    I'm so very sorry, Z. You gave so much of yourself to your mom, and this post shows how much she gave you.

    When you say "she should have had more time in her life - not more years of increasing disability and sickness, for sure" you're right on; it is so difficult to watch the unfairness of aging and realize how little we can do to preserve quality of life in our loved ones. I know that, as you said, that unfairness is not what your grief is about. It's more complex than that. But I do hope that, having reflected and written this, you appreciate that what you did do, you did with love and gratitude. I know that's true based on how you have spoken of your mom. And that's what's important.

    You are human. You couldn't be the perfect daughter. Recognizing that you'll fail to meet your high standards and kick yourself for it later, but stiffening your resolve and doing your best anyway to care for someone you love -- I have to believe that is brave, in a way that doesn't get talked about much. Perfect people don't know the burden of anticipating their own regrets, and facing that future down, every day, to do the best they can.

    Whatever unrealistic hope you had, however you put off thinking about your imminent loss - it got you through your role as caregiver. And whether or not you "heard" as well as you should have or acted the way you wish you could have, that is much less important than your willingness to do what you could do, with love, until the end. It is so hard.

    Thank you for sharing this. Hugs. And please tell yourself you did good.
    Jess