There are days I wake up assailed by guilt. Mom told me more than once with eyes ablaze, “Promise me you’ll never ever feel guilty. No daughter could have done more.” But I never promised and I never believed her. I knew I could have been more patient, more kind, more … . But it wasn’t true. I couldn’t be more than I was. Mom drove me nuts sometimes.
But some days I wake up angry that I feel guilt over the best I could do. I feel guilt even though I recognize the demands of an 18-year caretaking journey that started at a slow pace in the beginning, pneumonia at 87, falling down the stairs at 90, cellulitis at 91, skin cancer surgeries at 92 and 93, more falls, convincing her she needed to stop driving (95), transporting her to the grocery store and to get her hair done every week until she could no longer manage the stairs but bribing my husband to take her down the stairs and him having to say no, lymphedema, lymphoma at 96, two surgeries, chemo and radiation, family dynamics, more falls, broken coccyx, more lymphedema treatments, more convincing that she needed caregivers, her being impatient with caregivers, having to talk to her about being impatient with caregivers and her insisting she’s never been mean to anyone in her life, more falls, caregiver with Munchausen Syndrome calling to tell me mom had MRSA, gout and something else, a stroke that sent her to rehab even though she refused, high blood pressure, aortic aneurysm, more convincing she needed more care, finding right caregivers, family dynamics, her firing the caregivers, me managing caregivers, vascular disease, gout for real, more lymphedema treatments, a broken foot, move to assisted living, moving back from assisted living, onset of dementia that wasn’t dementia, transitory eschemic attacks, throwing her hearing aids at the mirror, hemorrhagic migraine strokes, another TIA, unable to speak, scaring the caregiver, next day being fine, managing every element of her life while I quit my job and turned an ankle, managing her money that was enough but not quite enough and then there was nearly none, paying her bills and washing her sink and making sure her prophy brushes were clean because she couldn’t see they weren’t and making sure the caregivers washed her drinking glasses so that slime didn’t grow, and making sure they documented when she had sores on her feet, instead of ignoring them and letting me find out by accident, and then all the times she had to talk about the past and rework the past and come to resolution about the past, over and over until at the last she was able to accept the past, thinking I was tired of it, but now wishing I could ask her questions I never thought to ask in all those years of talking, congestive heart failure, managing meds, more insisting she needed more care, and more resistance and then more guilt because in all of this I wasn’t the perfect daughter who never lost her patience.
And then I awake with grief because I loved my mother. I miss her hand on my leg and my hands in her hands warming them when they are cold. I miss her sweet smile when I walked in the door, always accepting, always open. I miss her being present in my life, being the crazy glue in the family, sometimes crazy and sometimes the glue and sometimes both. She was generous and funny and through it all she became kinder to her caregivers and more grateful for the care and recognized that she had a team of people around her who loved her. I miss her needing me, which was a prediction my friend Ted made years ago when I was a full-time reporter/photographer at a newspaper and mom had cancer and I had to leave work to help her. I miss being able to say to queries about the holidays, that I thought I’d never ever miss, “What are you doing for the holidays?” and answering, “Oh, mom will be here,” and I wished I hadn’t added the “as usual,” indicating what a pain in the ass she was, but really she added depth and continuity to my life and I didn’t realize how much. I miss the weekly and sometimes nightly conversations with her caregivers, who became my friends, and I miss the community of people who gathered around her, who became my community of people, and who I lost when mom died. I miss being her daughter. I miss her unconditional love. I miss that even to the end of her life, she was still my mother.
And then I awake and I feel relief that she is out of pain, out of suffering, and that the problems that my brother once said were layered one on top of the other, are over, that I don’t have to worry about her bathroom accidents, or worry about her falling in the night, or having a TIA and not being able to speak, or having a stroke, or ending up on hospice again, or wondering if the cancer will return, or if the caregivers will be there on a holiday, or having the constant interminable anticipated grief that drove me nuts. I don’t have to hear the endless reworking of the past, which I now rework on my own.
But it’s a mixed message I tell myself. The guilt is, of course, unwarranted. I can see that intellectually. But it’s still there, wrapped around relief and grief in a spinning orb in my brain.
It’s better each day.
But damn, I wish she was going to be here for Christmas. I would be so patient. I would be so accepting. I would serve her as I always did, but I would never roll my eyes at the endless demands, or grow impatient when she asked for a glass of wine, or whine to husband after she went home.
Of course, that’s a lie. I would still be impatient. I would still feel guilty. I would still feel tired. And, I would still love her.