Read part 1 of the series HERE.
This year, my dad died. He fell and broke his hip and was hospitalized for the last nine months of his life. He had COPD, congestive heart failure and severe diabetes. Prior to the fall, we noticed significant changes in his mental capabilities. He was forgetful, could not remember a recent conversation but could remember the names of his bunkmates on the ship on which he served during WWII. He became childlike in his behavior. He played with his medicines as a child would play with blocks, only wanted to eat certain foods, primarily sweets, and was prone to having temper tantrums. We also noticed that when out of his surroundings or when his routine changed, he became agitated, anxious and sullen.
While in the hospital, he lost all sense of time. He often thought he was at his childhood home or overseas where he once worked. It became apparent very quickly that this would be his new normal. This was hardest for my mom to understand. They had been married for 64 years and known each other all their lives. To see her husband so incapacitated both physically and mentally was enormously difficult. As the daughter, it was hard to watch my dad’s health decline. As one of his caregivers, it was even harder and I struggled with my new role. It was difficult to separate being the daughter from the caregiver and yet, it was apparent that I had to do so. After consultations with doctors, geriatric psychiatrists, and other medical professionals, we identified several things to help us adapt to our new roles, including:
Minimize the changes in routines and surroundings. Just like young children, the more disruption to the routine the harder it is for both you and your parents.
Pick your battles. You cannot win every fight so decide what is most important. There were days my dad refused to eat but he’d happily take his medicines for a chocolate milkshake.
Embrace humor. Try to remember some of the best times with your parent. Remember to laugh as well as to allow them to tell stories from their past.
Have candid family conversations. Taking care of a parent with dementia is trying for anyone. Make sure that you have open discussions about those challenges. If you are having difficulty, chances are that others are too.
Ask for help. Most people want to help but aren’t quite sure what to do. If you can provide specific requests – pick up medicines, cook a meal, feed the dog, etc., it can reduce some of the stress for the caregivers.
This is a temporary role. You will not be the caregiver forever. While it may be the primary role towards the end of a parent’s life, there is a beginning and an end to this new role.