When You Live What You Write: My Training Ground for The Whisper of the Fallen Oak
May 2, 2018 is emblazoned in my mind. My dad was being released from the hospital after suffering a low sodium-low potassium episode and his ability to care for himself was markedly diminished. His dementia was progressing quickly, and his needs went from mild to major within the period of a week. My mom was his caregiver every now and then; it was clear that this had shifted into a full-time job, and none of us were able to hide from my dad’s decline. It was front and center.
My otherwise (proudly) independent parents, who were planning a move and the sale of their house in June to be closer to me in a neighboring state, were faced with the need to move earlier than planned so I could be their support person nearby.
My mom grabbed their most basic needs from their home and we pulled up to the hospital drive, loaded up my dad, and high-tailed it to my home 6 hours away. They moved in with us for 6 weeks until their apartment was ready.
My parents were lovely house guests. They would sit on the porch when my husband was mowing the lawn and watch the activity of the neighborhood. Even in the midst of caregiving for him - along with all of the sadness and frustration - we will also cherish the funny moments. My dad would tell my mom that my husband was “the landlord” and they needed to watch themselves because he didn’t want to get “kicked out.” He stuffed his pockets with cookies for breakfast. He still wanted a beer every now and again. His sweet tooth which never existed prior to his Alzheimer’s diagnosis was in full force, requiring us to keep a lot more ice cream and cookies in the house than we did when the kids were small..
He also pocketed his prized coffee cup coaster he received from his last job at a war museum, proudly showing it off to the hospice staff. There were still glimmers of who he was peeking through the cloud of confusion and decline.
My parents at our wedding reception, 2017.
He talked to my mom’s pig figurines and called them “police dogs.” He conversed with people on television. He offered to share his meals with “the others” in the “hospital." He thought my mother was his mother at times, and then at other times he would sweetly reflect on how good his wife was to him.
There were, of course, many moments that felt like years. He clung to my mom and felt safer when she was within his field of vision. If she would go outside, he would shuffle throughout the house looking for her - she was his safety and security. He forgot how to use a fork. He lost the ability to understand simple commands like “sit down” or “stand up.” As many of you know, one never knows what to expect next, and I feel fortunate to have a mom who copes well and is able to find the humor in the midst of what is really, well . . . the loss of a human being right before your eyes. My sweet little dad, disintegrating and regressing, was slipping away.
As a writer, I knew I was in my own personal version of a topic incubator, especially writing for the end-of-life care industry. While I thought it would be difficult to face these topics, my overwhelming takeaway from the experience with my dad is this: caregivers of persons with dementia need support. Not just a little support, not just a check-in - but real, consistent presence.
Healthcare professionals who provide services to those living with dementia and their caregivers know this. They teach it often. During our experience with my dad, it became clear to me that this information - though taught - needed a way to stick.
There were times where we were so overwhelmed, we were unable to retain it. There were times when we felt no one understood the depth of our pain. There were times when people in stores and restaurants, not understanding his dementia, looked the other way not knowing how to respond. There were times of isolation, sadness, and hopelessness. My mom, in her 70s, functioned on very little sleep.
Experience tends to map out our next steps in life, so I set out to write a booklet that was a companion to those caring for their loved one who has dementia. The result is The Whisper of the Fallen Oak: A Family’s Guide to Early, Middle, Late and End-stage Dementia. Using the life cycle of the oak tree metaphor to explain the stages of dementia, the booklet gently guides caregivers through the decisions and emotions of the caregiver experience.
In every stage of life, our loved ones have value and worth. When the challenges of caregiving are intense, this booklet offers hope and understanding in the midst of overwhelm and exhaustion. The booklet gives step-by-step suggestions for action items that need to be taken care of each step of the way. Covering topics such as anticipatory grief, legal and financial planning, advance directives, nursing home placement By knowing what to expect, we can decrease caregiver anxiety and increase caregiver confidence.
It is my hope that this booklet can ease the pain of others during a sometimes lonely, exhausting, and overwhelming time in the lives of caregivers. Visit our new booklet here to see how it may help you, your clients, or someone you know who is caregiving for someone with dementia. Be sure to send us your thoughts on the booklet, too.
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