Special to The Hawaii Herald
She still knows my name. “Diane!” my mother exclaims joyfully when I arrive at the care home to visit.
“Do you know my daughter?” she asks all the staff, and then proceeds to politely introduce me to all the people I met nearly two years ago.
It’s good, though. She’s in a better place. The Alzheimer’s has progressed to a place where she, generally, is happily unaware of time and place. She doesn’t know what she doesn’t know anymore.
It wasn’t always that way. In 2013, our lives came to a crashing halt when neurological tests confirmed she had the disease. We had suspected it for some time, but we all lived in denial.
It’s tempting to think that the forgetfulness is just part of the aging process. It’s tempting to want to rationalize behavior and mood changes as normal. But it’s not.
Only after my friend from Texas, a geriatric social worker named Mari Fran, visited me twice in two years, did I accept the scary idea that there might be something wrong with my mother. Mari Fran has known my mother and me since 1993, and because the distance served to highlight the change, she insisted that I needed to get my mother tested.
“She isn’t the same,” Mari Fran insisted. “She has some kind of dementia.”
Sadly, she was right. This set my life on a path of paperwork, bureaucracy and grief — not to mention how it upset my parents.
In the beginning, it wasn’t so bad. She continued to live at home, where my father could care for her.
She had depressive episodes where she talked about suicide. She had mood changes and conspiracy theories. She has always been a sweet, friendly, light-hearted, happy person.
After a while, though, it got worse. She forgot where the bathroom was in her house. She didn’t know where her house was, and would wander into her neighbors’ homes. She fell regularly.
She was in their car one day when I came to the house. “Help me put this on. I know what it’s for, but I can’t remember how to use it.” She was upset.
“It’ll be OK, Mom. Let me help you,” as I went to buckle her in.
“No, it won’t. You don’t know what it’s like to have this. I feel so stupid. I should know what to do, but I don’t,” she snapped back.
We were always close. She was my best friend. I could tell her anything and know she would support me unconditionally.
Long before, the disease showed itself, she drafted a will that named me her Power of Attorney. I thought it best to finally enact that.
Maybe your experience was smoother; mine, however, was complicated and confusing. I worked with a lawyer to draft the legal verbiage needed for the doctor’s notes that would activate the power of attorney. I went back and forth with doctors’ offices to nag them for the letter, and then nag them for the letter utilizing the correct phrasing.
Following that, sticker shock accompanied my vetting of care homes. Do you realize that the top-tier O‘ahu homes charge $7,000 to $10,000 a month for the memory care units? And still, there is a waiting list?
Then there was the sorting out of her finances, which weren’t neatly laid out for me. This was extremely stressful. All this set against a backdrop of regular ER visits because she’d fallen again.
At some point, I realized that this was a full-time job and quit mine to pay attention to what I realized was becoming critical. As an only child, the burden fell solely to me.
In early 2014, I found her a wonderful, highly recommended private care home that actually had a space right away! It was not easy to convince her she needed to live in a new place, and it tore my heart to do this. I kept reminding myself that it was for her best.
It has worked out well. The home provides a loving, safe, caring environment where I know she will be fed three healthy meals a day, on time, and safely administered her necessary medications.
They provide stimulation in the form of field trips. They even take her to her medical appointments. It’s been a smooth stay, for which I’m grateful.
In mid-2014, I returned to the work force with a full-time job at KHON2. Working in a career I love provides me an outlet to keep my passion alive in my heart, so not working is not an option.
It does, however, affect my ability to visit my mother often. In the half-year I was a housewife, I visited my mother four days a week. Now, it’s far less frequent. My only consolation is that she probably doesn’t have a sense of time.
It is not easy to juggle a career, a young child and a sick mother. While I love what I do, my body pays a high price. I anchor the morning news from 5 to 8 a.m. on weekdays, which means I wake up at 3 a.m. and am tired not long after I leave the station at noon.
I usually nap from 1 to 3 p.m., then my husband or I get our child from school and start the homework-dinner-bedtime process. My bedtime, because I like sleep, is 6:30 p.m. At this point, my third-grader’s curfew is later than mine!
It’s my obligation to my station and our viewers to perform as best as I can, which means not having bags under my eyes, being able to think clearly and projecting energy into my performance. I am willing to sacrifice not having a social life.
Unfortunately, if you calculate the hours, that doesn’t leave much time during the weekdays to do more than tend to my nuclear family. Saturdays are full of child activities, so Sundays is when I squeeze in family time, personal time, Mom, errands, housework and bills (that now include Mom’s, as well.)
At 8, Olivia is at a wonderful age where she loves and needs me. She’s not sassy and
secretive. She’s open and honest and, most of all, she wants all of my attention, all the time.
I want to give it to her. I want to be present for this precious time.
But the demands on me are high. I feel like I’m on a hamster wheel and I’m not even getting in any real exercise. I do it incredibly imperfectly, but I will tell you what gets me through the day:
I accept that I’m only human and will not achieve everything in one day. If, at this point, I can get just one task done after work, I consider it a success. The bar is real low for me, I know.
I accept that the bar is real low for me. It has to be. I acknowledge I’m juggling a full load, but beating myself up for what I don’t do isn’t productive.
I accept that it’s unrealistic to see my mother as often as I did when I was not working. I’m comforted by the fact that the caregiver tells me Mom isn’t aware of my visiting schedule.
I give myself permission to be overwhelmed, and then I give myself a pep talk so that I
can keep going.
I remind myself to replace fear with faith that I have the strength to do this, and to continue forward with blind optimism that it will all work out in the end. One day, I won’t be so weighted down with responsibility.
I remind myself to find joy in life. It’s OK to make time for me. Trey Terada gives me ‘ukulele lessons, Amanda Webster teaches me yoga, and I walk by myself. It’s not a waste of time. It’s recharging my internal battery.
I lean on spiritual faith for encouragement. I think spirituality helps people cope. Mine is to meditate — and believe.
I prioritize. My daughter is my personal priority. My work is my professional priority. Self-care is the path to keep me there, so I sleep, eat well and try to exercise. My mother would understand this.
So there you go. It’s a daily struggle to stay the course, but so far, I’m still here, and nothing crazy-bad has happened (other than the occasional moments of anxiety in which I think I’m totally losing it.)
One day, my mother will no longer remember even my name. And that will be OK, too, because I will carry the memories for both of us.
Diane Ako co-anchors KHON2’s “Wake Up Today” morning news program. Her news stories have garnered multiple awards from the Society of Professional Journalists, Hawaii Chapter, as well as Emmy nominations.