This post from Notes for Dementia Caregivers is written by a businessman in India, but he has a lot to share with the families of caregivers everywhere. It’s entitled “Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.” Here, he looks back on some of his early “mistakes.” Follow the link to read his lessons and tips to help the dementia caregivers in your life.
My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.
Briefly, I did not try to learn about dementia or its caregiving after the diagnosis and had no idea of what to expect. I think I expected no impact I underestimated the caregiving load and did not appreciate that my wife could be overwhelmed physically and emotionally.
I perceived her as “negative” when she looked worried or asked me to reduce travel overseas because she would not be able to handle emergencies.
Most people in India treat dementia patients as they would treat any other elder. Close relatives egged my mother-in-law to show more “willpower” and criticized and mocked her for her “dependence” on my wife. They also blamed my wife of negligence and ill-treatment of the dementia patient based on the patient’s confused statements and their own faulty perceptions. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments instead of explaining facts to relatives. My wife was completely isolated by my relatives.
I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. This unexamined assumption of mine affected my attitude and decisions for many years.
As my wife’s time and energy were diverted into caregiving, she had to give up the professional work she loved, and also her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realise that she needed emotional and functional support, and that she needed time off from caregiving I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work.” This unexamined assumption of mine affected my attitude and decisions for many years.