by Michael Bloom~
On August 23, 2009, my mother called me early in the morning with worry in her voice. I remember this call vividly as she told me that my father was acting “weird.” Apparently, my father refused to prepare the morning medication at the start of their breakfast. As a retired chemist, he typically was very organized and regimented with each and every activity so this was indeed strange. When my mother inquired about the medication, he frowned at her, angrily got off his chair, and stormed upstairs to his office and slammed the door. My mother, a five year cancer survivor and frail 82 year-old, was afraid to follow him.
I drove over to their house right away. We lived only five miles apart and, as I drove, my mind raced with thoughts and possibilities as to what could be wrong. The previous afternoon during our daily phone chat, my father shared some of the details of what he purchased at the grocery store.
At that time, my father was a very healthy and independent 82 year-old. He was still driving and managing all household needs, including my mother’s physical care, extremely well. During the call, he happily reported picking up an extra cantaloupe for me along with a few other food items that I could pick up at my convenience. Nothing seemed out of the ordinary during that conversation so this anxious call from my mother was a bit shocking.
I arrived at my parent’s house and briefly greeted my mother before going upstairs. I knocked on my father’s office door and announced myself. A faint voice said “come in.” When I opened the door, my father was sitting in his easy chair with his head drooping. I asked him how he was doing and he responded that he did not know. Fearing a stroke, I picked up the phone and called 911.
The EMTs arrived within ten minutes. They discovered that my father had very low blood pressure and a heart rate of 25. He was taken to the emergency room and was treated for a catastrophic heart failure event. Later that day, a pacemaker was implanted and many additional tests followed. Unfortunately, my father lived the remainder of his life with vascular dementia as a result of the oxygen deprivation to his brain.
None of our lives would ever be the same. He instantly transformed into a person with severe memory loss and physical care needs that would require 24 hour support.
After five weeks of hospitalization, he returned home under my care and supervision. I never returned to fully live in my own home and ended up putting my house up for sale a year and half later. As an only child who had a strong, deep and precious relationship with both parents, I did not hesitate to jump right in and assume the role of family caregiver.
Although this story is my personal story, each and every day tens of thousands of families experience a similar health crisis that starts them down the road of caring for a loved one with dementia. The journey of care is profound and transformational. Caregivers tend to be compassionate, dedicated and self-less. Over time, they sacrifice sleep and self-care and may just be surviving with each passing week, month, or year on the brink of burnout.
Dealing with a loved one who is suffering from dementia provides some of the greatest challenges to caregivers. In order to navigate without losing your own mind, take a deep breath and quickly acknowledge your sadness that your loved one is confused and not like she/he used to be. As you exhale, do your best to show your caregiving patience when your loved one acts up during periods of anger or confusion. Just remember that your loved one is not choosing to be that way and that her/his conscious awareness is buried deep inside the fog of dementia.
After each challenging dementia episode passes, make sure you take moments of space for yourself. You could journal about the experience privately as a way to let it out. Or, you may even want to find a trusted friend or family member to share your feelings with so you can process and release them. Otherwise, your frustrations will build and burst your stress balloon which can lead to you lashing out or saying something you might regret. Even if that happens, just apologize, seek forgiveness, and move forward. After all, we are human and deserving of forgiveness.
One of the best actions you can take for yourself would be to find a local support group for people caring for loved ones with Alzheimer’s and Dementia. Discussing challenges and promising interventions with peers who understand your path can provide great value to you and the loved one receiving your support.
You are amazing for making the choice to serve each day. Go forward with determination and patience, fellow caregiver. Be gentle with your loved one and with yourself. Patience is the key to providing support you can be proud of for the long term.