It’s been over 25 years since my mother first showed signs of Alzheimer’s. I helped care for her for 14 years and many days were long and hard. After she died, a part of me thought I was done with caregiving; I had served my time. But, of course, that’s not how life works. I was, however, given a reprieve.
This summer I was reminded of what caregiving looks and feels like as I faced a series of family health issues – each one requiring something different from me.
The first one happened at the end of our week at Lake George, when my husband was suddenly struck with the pain of a kidney stone. His exuberant personality shifted into a hardly recognizable grimness that spread across his face. Before I knew it, he was throwing up repeatedly, and we were on our way to the emergency room. When someone you love is in pain, the only true relief comes when the pain eases. There’s no time to think about yourself; it’s hard to even remember to breathe.
The second health scare was even more traumatic. I received a phone message saying that my brother had been in a serious car accident. He survived, but his sternum was broken, his kneecap had been shattered, and they were checking him for other injuries. He was in the hospital, and I was his closest of kin. Time suddenly stopped, or maybe it went reeling backwards. This was a brother I grew up with and adored. Scenes of us playing with Matchbox cars, riding bikes to the park, swimming inside the shark nets in Panama flashed through my mind. As a teenager he totaled his car. I remembered how my mother said she cried when she saw his crumpled car because she didn’t believe he could have survived. But he did. Back then. And now again.
This summer, I spent time at the hospital, whispering in the ante room before his surgery, foIlowing my brother’s own meandering memories about the moon landing. Fifty years ago, we sat side by side on the cool tile of our Florida room watching black and white footage that became history. I composed poems in my head about astronauts and rocket ships and snippets of our conversation. But inside the thrum beat of my heart repeated: “Please live. Just live.”
I didn’t want to be a caregiver again. I felt like I had PTSD and was being plunged headlong back into a tunnel I couldn’t escape. My mind flashed over all the responsibilities I had – not just mine, but my brother’s. I couldn’t do it. I couldn’t take care of him – his needs were too great – and be present in my own life. Yet, how could I not.
My third caregiving role snuck up on me with a gentle nudge from Sunny, our golden retriever. Granted, my focus had been elsewhere, yet her gradual loss of energy registered. She was a dog who spun in circles at breakfast, raced up and down our driveway, barked at every delivery van, accompanied me to the barn each morning and took long walks with her tail lifted high. Over a period of a couple of days, Sunny seemed to age – she moved slower and the light seemed to dim in her eyes. My first thoughts were “the heat” or that she’d dug something up on the farm and eaten it. But when she struggled to climb the single step into our mudroom, I knew it was time to go to the vet.
With a possible diagnosis of an infectious disease and two bottles of medication, I started out the week hopeful. We could fix this. Sunny had always been strong and energetic with an unquenchable spirit (much like my husband). But one of the lessons I’ve been learning this summer is that healing takes time. And each day brings its own unique set of circumstances.
Caring for the horses on our property reminds me that we can’t rush time. Foxie and Ruby need to be fed every day, and they receive allergy medication twice a day to keep them from rubbing themselves raw. Every morning and every evening I walk down to the barn and call them in. I scrub out their water buckets, apply ointment on the slow-healing wound on Foxie’s belly, give the horses a scratch on their necks and look into their friendly, dark eyes. This predictable schedule is grounding.
My husband will have a second procedure to finally remove his kidney stone next week, my brother has transitioned from the hospital to rehab to home, Sunny makes her daily trek to the barn with me while I watch her for signs of new life.
Despite my anxieties about caregiving, I’m grateful for these days that remind me to appreciate each moment.
Via negativa. The phrase from my writing retreat earlier this week floats up as I wake to golden light and birdsong here at the lake. The absence of what I’ve left behind is noticeable in this place. Lake George is a place of history, family, layers of memories. Last night, it was easy to miss in the rush of travel, packing and unpacking, opening the house, straining to slide up the old windows so that the house could breathe, turning on fans to expel the heat.
But this morning, a coolish breeze dances into the second story bedroom of my great great grandfather’s house, caressing me where my body rests beside my husband, our hair against the headboard of my grandmother’s sleigh bed.
I remember sleeping next to her as a child, my wide eyes taking in her dressing table, the wide fat brush she ran through her silky white curls, the curves of glass bottles filled with amber perfumes. One day, I must have been sick, I dozed there all day in the midst of fevered dreams. Never fearful, just awake in my sleep to this state of being – separate from where I had been the day or week before, deeply entwined with something ancient.
Is it the mahogany of this old furniture that brings me back to this place and time, or the cadence of birdsong looping among the statuesque pines that guard the lake?
What is not here is almost as present as what remains. The voice of the floorboards as my mother’s feet touched them every morning, the scent of bacon my father cooked in a scarred pan. The hint of dust and bat guano rising from the old library where my mother pulled Oz books from the shelves for me to read. Each trip north I make, the ghosts of this place still beckon me: Come, journey back with us to a dream where memory lives.
This week will be my mom’s 100th birthday! She was born on June 26th, 1919. She passed away in 2007 at the age of 88, after living with Alzheimer’s for 14 years. As her 100th birthday approaches, I’ve been wondering about the best way to celebrate her life.
What came to me was to spend time with her memory and imagine what she would say to me. Growing up, Mom was always a great listener, and as I got older, I appreciated her wisdom. I’ve missed our talks. I could tell her anything, ask her anything, and there was never any judgment, just appreciation for who I was and the opportunity for us to explore together.
If I had the chance to visit with her again, these are a few things she might want to remind me:
1. Be accepting and compassionate. Not everyone has had the opportunities and gifts that you have had. Treat others gently. A kind word goes a long way.
2. There is no handbook for aging. Look for role models, but don’t judge yourself against them. Spend more time with precious memories than regrets. Treat every challenge as an opportunity for growth.
3. Keep learning. Mom believed in education. She loved taking classes and learning new things. When she was in her 50s, she took a writing class that led to a second career in journalism. She took a photography class in her 60s. She believed we never stop learning.
4. Find a circle of support. If you’re losing a parent to Alzheimer’s, suffering through some kind of grief, having a hard time moving forward or just enjoying life, it’s a blessing to share the difficult times and the good times with those who care about you.
5. Talk about the hard things. Mom believed that honest conversations could change the world. As a newspaper feature writer, she focused on topics that weren’t often talked about, such as menopause and aging, retirement issues and the empty-nest syndrome. She wanted everyone to have access to information that could help them.
6. Lead in your own way. Some leaders are loud, and some are quiet. Some are action-oriented, others are still. No one way is the right way. To make a difference in the world, be yourself and connect with what matters to you. Your passion will awaken yourself and others.
7. Read good books. When I was growing up, if I was struggling with something, Mom would point me to great literature, books that would open my mind and give me perspective. I was always grateful for the nudge and the inspiration. I think she’d be overjoyed that I’m now a manager of AlzAuthors.
8. Be in the here and now. Mom used to say, “Don’t wish away your life.” Rather than spending time in the past or the future, we should lift our eyes to the present. Each moment has gifts waiting to be opened, if we are present and engaged.
9. It’s okay to cry. I used to hide my tears from my mom when I was young. But she always knew when I was sad or when I needed to uncork the emotions roiling inside me. She cried easily, and some of my sweetest memories are of being in her arms and allowing my tears to flow.
10. Let nature soothe you. My mother’s favorite place in the world was Lake George, NY (see this post), her childhood summer home where she roamed the hills and swam in the clear water. She understood on a deep level how nature settled the questions inside her.
11. Share your experiences. Mom used to say, “Your writing is beautiful, just beautiful,” — not because it was perfect, but because she believed in the power of putting words on paper and sharing from the heart. When we express our truths, we take part in a sacred birthing of ourselves, and joy springs from that creation.
Happy 100th birthday, Mom! I miss you and look forward to seeing you again one day. I am so grateful to have been your daughter. Thank you for being such a beautiful role model. I love you!
At AlzAuthors we are celebrating our fourth anniversary, and the management team is so excited! We have come so far since the co-founders first partnered in 2015 to help raise awareness of Alzheimer’s and dementia.
Here are some highlights:
- In 2016 we launched this website and have since featured more than 200 authors and their books, many written from the trenches, giving an up close and personal glimpse into the lives of Alzheimer’s caregivers and the disease. Upcoming blog posts are scheduled into December!
- We have gathered an active army of advocates for those living with the dementias who work to break stigmas attached to the diseases via social media, online, and in-person events.
- We published an anthology of our first year’s posts in November, 2018, and will soon publish a second volume.
- The full management team – working exclusively online since 2015 – met in person for the FIRST time in November, 2018 at the Caregiving.com National Conference in Chicago!
- We partnered with the Kline Center for Dementia Support and Grandparenting Research to launch our first “Inspiration Collection” on board the Connecting Circles of Care and Building Bridges of Hope Caribbean Cruise for Caregivers.
- Our authors are donating books to our Traveling Libraries in North Carolina, Ohio, and New York which go on the road to Alzheimer’s and dementia events and into the hands of needy caregivers.
In honor of our loved ones and to acknowledge the many strides we’ve taken, we’re hosting a book sale and raffle in conjunction with Alzheimer’s and Brain Awareness Month. Starting today through June 27 you can take advantage of this opportunity to purchase books at reduced prices. Some are even FREE. We offer memoirs, novels, caregiving guides, children’s books and poetry in digital, paperback/hardback, and audio. Our books are written by caregivers from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or three! – to help guide you on your own dementia journey. They also make great gifts!
Visit this link to see all the books on sale.
I’m pleased to be offering Motherhood: Lost and Found, named “one of the best Alzheimer’s books of all time” for the second year in a row, and What Flies Away for just 99 cents each during this sale! (Sale price for Motherhood: Lost and Found starts at Noon on 6/21.)
As Mother’s Day approaches, I feel something in my heart. A low growl of pain. The kind an animal who has been wounded makes. I think of the kittens birthed in the back of my parents’ closet. The low moans that came from the mother cat. And, gradually, the tiny mewling that issued from the blind bundles of fur. Are we meant to spend our lives aching, searching for the one who loves us? Maybe so. As that’s how we come into this world. And leave it.
My mother had Alzheimer’s for 14 years. She slipped away, borne on the waves of memory to a place I couldn’t follow, leaving me weeping on the shore. And, suddenly, she would return, full-sail, a mother ship, so resplendent with the weight of wind in her canvas. As if she had no reason to be present other than to spread kindness and love.
I remember the night I kissed her goodbye at her rest home. A typical night, one where she had barely spoken a word all day, gradually slumping to one side in her lounge chair. During lunch, she hardly took notice of the food on the fork I held to her lips. She was someplace else, had perhaps become someone else, a person I no longer recognized.
As the moon left patterns on her quilt, and I turned her bedside lamp off and bent my head to kiss her, her lips pursed. She kissed me on the cheek over and over again. Feathery kisses, the kind she used to share when she was fully alive, fully mine. At the time I thought she is giving me kisses for the future.
Or maybe they were kisses held in time, kisses to be remembered, to remind me of who she was, who she will always be, even when her body is no longer on this earth.
So, on this Mother’s Day, I still feel the ache of what’s missing; I scan my life for the places where I feel love. There are many. Yet, inside me, I cup the emptiness, feel a low moan caressing my chest. Today, I give thanks for the presence of memory, the tender gifts of love a mother leaves a child.
Endings and beginnings. This month I seem to be in the midst of both of these passages. Everywhere I turn, it seems there’s another ending — a change, a loss, a time to say goodbye. But lest I get too caught up in grieving the passing of a season, I can’t help but see the seeds of new beginnings all around me as well. Read the rest of this entry »