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In My Family, It’s What We Do

When I was in the fourth grade, my mom retired from her high-powered position in order to stay home with me. She became a “bake cookies, go to the PTA meeting, host the girl scout meeting” kind of mom who never said no to anyone who needed help.  She was all about others and never about herself.    

When I grew up, Mama became my best friend.  She was the one I called to talk to about everything and about nothing. She spoiled our kids rotten and giggled while she did it. She was selfless and her grandchildren were her world.  That’s the mama I remember. 

The unthinkable happened and Daddy was diagnosed with a brain tumor in 2008.  Mama was terrified, depressed, and anxious and unable to cope, so both she and Dad became dependent on me to take them to doctors’ appointments and interpret our treatment options and help them make decisions and manage their affairs.  In March of that year, Daddy underwent a 12-hour surgery to remove as much of the tumor from his brainstem as possible, which was almost, but not all of it.  He spent the next three months in the hospital relearning how to speak, swallow, and walk again and I spent the rest of his life helping mom take care of him. I learned how to feed him through a stomach tube and how to read a radiological swallow study to see if he could safely swallow. Then he had almost two years of radiation and chemo.  Dad also developed other problems after the tumor including a perforated bowel, which almost took his life.  Over time, however, he slowly improved and was gradually getting back to something approaching “normal” when we realized something else was wrong.

Somewhere in the middle of Dad’s recovery, Mama’s stroke happened; we’re not even sure when. As months went by, things just seemed off.  We knew something was wrong, but weren’t sure what.  After more doctor appointments that I can even remember, we had several diagnoses, one of which was vascular dementia. That’s when I realized, I was losing her.

One of the unique symptoms of her dementia wasn’t so much memory loss as it was personality change.  It was gradual, but over time, she changed. Her world narrowed, her selflessness seemed to wane, her focus turned inward, and her mind grew forgetful as she became unable to do things like drive, or balance a checkbook, or manage her own medications, or even cook a meal and Daddy and I had to do all those things for her.  If you only met mama in recent years, you may have thought her selfish, isolated, and eccentric.  And you’d be right. But that’s the disease, not the person. And that’s not the mama I remember. 

Then when Daddy died on December 14, 2011 following what was to have been a routine, low-risk surgery, Mama’s world completely shifted on its axis and instantly, I had to take on the role of sole caregiver for Mom and in essence, became an instant parent to my own mother.  Literally, the day Daddy died I had to take Mama home and dig out all her prescriptions and figure out what she needed to take that day.  That very day, I had to figure out how to give her the weekly injection she needed for her rheumatoid arthritis.  I’d never injected anyone or anything before.  I had to take over paying all the bills, organizing all her medical care, grocery shopping, and providing her meals.  There was no one else, and it was now my role alone.  I was her sole caregiver and financial and medical power of attorney.  Instantly. 

Her last three months were spent at an assisted living center which she affectionately came to call “the club.”  Those months gave me a tiny glimpse of the mama I DO remember.  She became more outgoing with people again; she started to care about others again and enjoy doing things for others again; thinking about others again.  She became more active, going to dinner on the bus with her new friends, participating in activities, and joining others for three square meals a day.  Later, she helped make the leis and grass skirts for a luau at “The club” and even danced the hula at the party. 

People think that the caregiver gets a major reprieve when their parent moves into assisted living.  They do help, but major reprieve?  No.  As mom’s primary caregiver, I was still responsible for her and the assisted living center was just that – assisting.  I was still on call 24/7 of every day.  I never turned my phone off – ever.  I still drove her everywhere she needed to go, paid her bills, kept her tiny pantry stocked with snacks, and managed her medical care.  A caregiver lives life at “red alert”,” always waiting for “the call” that will change everything and not for the better.

I’d expected to get a call that mama was sick, and we’d need hospice.  But the call I got wasn’t that she was ill, it was that she was dead.  She apparently suffered a major heart attack and died almost instantly.  She was found by one of the assisted living staff who went to get her for breakfast.  And just like that, my days of caregiving were over. Except there was an aftermath.

There is too much red tape to die.  I’d dealt with all of it when Dad died and again, when Mom died.  In fact, I’m still dealing with Mom’s affairs and will for the next 12 months if my first experience repeats itself.  I wouldn’t change anything in the world about being my parents’ caregiver.  In my family, it’s what we do.  We just DO IT.  But that doesn’t mean it was easy but I did it, not through my strength, but through Christ who gave me His strength.