‘Why Do We Always Hurt the Ones We Love’ is a song, but unlike a country song when played backward, does not reverse out of those moments when we’ve said something we regret. Pain is a drain. When we feel pain, we feel a drain on our emotions, causing us to lash out. Firing spontaneous expletives in an explosive expression communicates our primal fear and frustration.
Communication is key –’The Caregiver’s Bill of Rights’ outlines eight important steps we can all apply to any nurturing relationship. A retired Oncological Nurse recommends learning to develop what she refers to as “Healthy Boundaries”. She also served as the primary caregiver for her husband of many years. This form of self-preservation is essential. ‘The Alzheimer’s Reading Room’ article “Tea and Empathy” suggests delegating and listening. Recognize the signs and symptoms and delegate among family, neighbors and friends. Most importantly, take care of yourself. In a flight emergency we are instructed to put on our own oxygen mask first. No one can begin to meet the needs of others until their own basic needs have been met.
Several of these links are directed to Alzheimer’s disease and related dementias, but caregiving is often treated as a perfunctory responsibility pertinent to any relationship, regardless of medical need. It’s alright to ask for help, in fact, it’s encouraged! Learn to take GOOD care and say you’re sorry when necessary. I’m sorry, Mom, and I accept your apology, too.
‘The Lorax’ by Dr. Seuss
I have been a caregiver advocating for the elderly community for 40 years. This is from where we learn most, and learn best. This practical education has enriched my awareness providing insight applicable both as a caregiver and a patient.
While undergoing medical tests, I spent weeks on the geriatric floor of the hospital which characterized the population with GI disorders. I was barely 18. I felt comfortable surrounded by those older and wiser, with whom I had become familiar and relied on to nurture me in my time of need. I was relocated to the “Juvenile” wing, (as in juvenile delinquents). It was assumed I would be more comfortable among those my own age. My entire treatment was dedicated to maintaining calm, resting my gut and curbing physical and mental activity. First, teens don’t sleep. Secondly, teens are invincible, especially in the face of death. Youth with stage 4 cancer, extreme eating disorders, grand mal seizures and severe Crohn’s disease. These “kids” had literally lived in hospitals and had multiple surgeries under their belts. The rock music and medical marijuana filled the air day and night. Having just been plucked from 6 short weeks of my first semester at college, THIS was dorm living! Ironically, I needed the rest, I longed for peace and quiet. I wanted everything to stop.
Sensory overload is what we all are subjected to from birth to death. Used as torture, it is especially cruel while our bodies are expending all its energy to heal. Our focus is distracted and the symptoms become amplified. Alzheimer’s disease and related dementias are not exclusively for the elderly. No one of any age is immune to the insidiousness mental confusion and cognitive dissonance creates in the mind. There is no mechanism to process nor comprehend external stimuli, which is often perceived as a threat. Caregivers need to help themselves before they can even begin to consider helping others. Learning empathy is essential. The Alzheimer’s Association developed an on-line course designed for all caregivers called EssentiALZ. An affordable, invaluable tool for everyone, supporting organizations endorse EssentiALZ to help us better communicate needs to have an effective, continued relationship with those we may be dependent upon, or those who may depend on us.
‘Advance Planning Can Help You and Your Family‘
“Elders wishes were more likely to be known and respected when nurses of other health workers guided them through the planning process.” Paul S. Mueller, MD, MPH, FACP ‘Journal Watch’, April 13th, 2010