Throughout my journey with MCI, my caregivers have played an evolving and ever more important role in my quality of life. Keith is an excellent caregiver—and getting better all the time. He’s patient, observant, and has transitioned from jumping in to try and fix any bump in my road, to asking “Do you need me to help?” This simple rephrasing has been significant and empowering to me, in that it acknowledges my right and ability to still make choices and to decide if I do indeed need help, or if I feel confident in doing it myself.
I’ve also written about my change in language when Keith drives me around town—another caregiving task. Whereas initially after I stopped driving I would always apologize to Keith for inconveniencing him, I now simply and sincerely say, “thank you.”
My family, of course, are also part of my caregiving team. My son and daughter-in-law are supportive from where they live on the East Coast. They call regularly, are excellent about recommending resources and research studies, and make frequent visits. My daughter, son-in-law, and grandchildren who live nearby are always ready to help, especially now that they all drive.
It sounds lovely, doesn’t it? And it is…although there are always glitches. One major, consistent complaint from my caregivers, including Keith, is my resistance to ask for help. “How are we supposed to know how to help you, Mom, when you don’t let us know what you need or ask for help?” my children scold me with great irritation and annoyance. Or I’ll hear from Keith: “I said I would cut down that bush, all you had to do was ask,” Keith says out of concern for my safety.
I have to confess I have a tendency to be stubborn in my need for independence. Like a determined three-year-old, I’ve always wanted to do it myself. In the past this served me just fine but now, even as I still see myself as fairly competent, intelligent, and resourceful, this viewpoint rarely coincides with my family’s perspective.
In hindsight, I can clearly see that at least for the first year after my diagnosis, I was in denial—which was the major reason I didn’t ask for help. I didn’t want to believe I really had MCI…or perhaps better stated, I didn’t want to admit that my memory and cognitive thinking was so bad that I needed help. Along with denial, I felt shame and embarrassment. Every time my children or Keith reminded me I was repeating a story or retelling an event…or as they quietly opened the correct cupboard door having witnessed my frustration at not knowing the location of an often-used item, I felt shame. Denial, shame, and embarrassment all contributed to my resistance to ask for help.
As I’m approaching my third year of this ever-evolving journey I’m experiencing a shift in my attitude and behavior.
I’m much more inclined these days to ask for help from my caregivers. I remind myself of my own experience of how good it feels to be of assistance to others and, as my daughter has reminded me more than once, my resistance to ask for help denies my family of ways to demonstrate their love for me.
Learning to ask for help from my family and friends is one aspect of a relatively recent shift I’m now calling, “caregiving for myself.”
This phrase came to me this week as someone asked me what I do to help myself stay as mentally healthy as possible. I quickly listed brain games and exercises, yoga, walking at least five days out of seven, reading, eating healthy foods, getting good sleep…all the “standards” suggested to help maintain good mental health. Then I thought of all of the other parts of my life I’ve altered, adapted, given up or replaced in the last three years; not out of resentment but in a proactive and caring effort to reduce and eliminate stress and anxiety…emotions that increasingly arise when I am unable to accomplish a task or participate in an activity I enjoyed prior to MCI.
For instance, I am no longer able to play the piano but have substituted listening to pieces on Pandora. I’ve given up knitting because it was too frustrating and returned to stamped embroidery where I can sew over a pattern. I’m highly selective on which crossword and jigsaw puzzles I do, as some have too many pieces (500 is my limit), or are just way too difficult and again, cause frustration. I’m still reading, but if a book doesn’t grab me in the first ten pages or so, I choose another. I rarely try a new recipe anymore, and ignore any of my old ones that seem too complex.
The enlightening piece of this mindset change occurred when I realized how much I’ve actually taken it upon myself to alter my own behavior and expectations over the past nearly three years. Once I worked through the worst of the denial, shame and embarrassment, I was able to be intentional and proactive about making changes and adaptations, and adapt to these changes on my own behalf. That’s when I coined the phrase, “caregiving for myself”. I really like this phrase because it embodies all of the great attributes of a caregiver: kindness, compassion, attentiveness, adaptability and creativity.
In closing this post, I want thank all of the “standard” caregivers that have been and continue to be part of my life: Keith, my children, my friends, my therapist, my yoga instructors, my medical team. You’ve been great role models for me and have taught me well!