Dearest and Amazing Susan,
Thank you for this. I am studying a Bachelor’s degree in Dementia Care and fully understand your frustration. The main reason I am at university now is because I was fed up with healthcare workers not listening to me, the primary carer for my wonderful 90-year-old dad who is LIVING WELL with Alzheimer’s disease.
Sadly, arming myself with detailed academic knowledge hasn’t helped much. Whatever I have to say still falls on deaf ears. No, I am not a registered nurse, doctor, or health care worker. BUT, I do know what keeps my dad safe and happy, and I have living proof, even though it’s not what academics and researchers might consider “evidence.”
It’s as you describe, Susan, — behaviour is the same for all human beings whether one has dementia or not! It’s a constant battle to re-educate the people who are involved in my father’s care. He lives alone in his own place, with a carefully programmed roster of paid care givers who enable and assist him with daily life such as meals, dressing, hygiene, exercise and social interaction.
It takes him time to develop trust, respect and feelings of companionship with these caregivers, but when he develops that trust, and feels safe and secure with someone then ALL IS WELL. However, when an agency care manager arbitrarily decides to change the roster and sends a ‘stranger’ in to help with his shower you can imagine his reaction (and we would all feel the same).
Sometimes they just don’t get it.
At university, I am obliged to study the research that you refer to and often have to laugh. It is all so simple and obvious – to people like you and I. We have to keep spreading the word and educating all who cross our paths. People do not believe me when I tell them my dad is happy and well – he is on no medications (just probiotics and vitamin D), uses no mobility aids (he goes to hour-long exercise-to-music classes twice weekly to maintain strength and have fun), and we monitor his diet so that he is hydrated and consumes adequate protein. Add a sprinkling of car pool Karaoke (we sing out loud in the car), laughter (always having fun) and kindness (mutual understanding) and there we have it. Dad has little to no memory, and occasional confusion, but he is happy and he lives a meaningful life.
Kate G. mistakenly commented anonymously; thankfully, she sent me a follow-up email that said:
I have been reading your blog for some time now, I KNOW we are totally aligned! We have so many similar stories you and I!
I left a glam life and career in Europe to come back to Australia and be with my parents. My mum had cancer, dad was fine. Then when dad was left on his own I began to notice some changes in his behaviour that was beyond grief. Off we went to doctor, then scans etc, then memory clinic, then gerontologist, then… the Alzheimer’s ride took off! Amazing times!”
You said it Kate. I’m glad you reached out to share your experience. #FightTheGoodFight #WeCanCareBetter #WhereverWeAre
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