My Mom taught me hard work and duty to family. She grew up poor with seven siblings and minimal education, married at 22, and had me at 23. She showed me what sacrifice looked like when she and my dad moved our family from Taiwan to Texas to build a better life for me and my brother because we both had severe asthma and were struggling in the smog-filled city of Taipei. Growing up, I hadn’t considered how scary it must have been to leave their home and start over in a new country with two little ones in tow, a handful of English words and the unwavering drive to do whatever it takes to support their children. They opened a Chinese restaurant in a small city just North of Austin and worked hard every day, often preparing for the next day after closing while my brother and I slept in the office behind the front counter. They would carry us to the car to go home around midnight and start over the next day. Discrimination was not uncommon but my Mom continued to smile and thank customers when they were rude about her imperfect English. Now, memories of their journey overwhelm me with gratitude and admiration.
Caring for my friends living with dementia often makes me consider what kinds of things I would need to know about my Mom to help her feel happy and secure if dementia were to become a part of her life. The big things and the small details. What roles were most important to her? Which stories and experiences defined her? How does she complete her daily routines? When has she felt most loved? Scared? Out of control?
If a day ever came that my Mom needed help with navigating life while losing memory and rational thinking, I might reminisce with her about how brave she was for building our life in Texas and tell her how grateful I am for the life I have because of everything she did. I’d know that she feels at ease when my dad’s diabetes is well-managed, her children are well, and the house is tidy. I’d know that her self-care ritual includes a detailed evening skin care regimen and watching videos of adorable puppies while snacking on her favorite fresh fruit. And I’d know that hugs and words of affection would make her feel uncomfortable but sharing a meal and going shopping together makes her feel close to me. Those are the kinds of things that would guide me in caring for her.
A background in occupational therapy and The DAWN Method helped me see the importance of understanding the whole person. Not just knowing the person’s history and level of physical and cognitive ability, but also details like whether they prefer morning or evening showers (or baths), foods they like/dislike, signs of distress, familiar phrases, favorite stories, proudest moments, and cultural nuances.
I encourage care partners, family members, and friends of those living with dementia to utilize your unique and intimate knowledge of your loved one to help them feel safe and happy. Pay attention to the big stuff, the small stuff, and the things in between. When we make the effort to know and respect a person’s story, preferences, rituals, and idiosyncrasies, we can truly provide person-centered care.
Lisa
