"All we see of someone at any moment is a snapshot of their life, there in riches or poverty, in joy or despair. Snapshots don't show the million decisions that led to that moment." ` Richard Bach
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They family physician officially diagnosed Grandma with AD in 2003 but my grandfather had noticed that something was different long before then. Before he passed away of lung cancer in 2001, he told Mom to “Keep an eye on your mother, something isn’t right.”
But somehow Grandma managed to hold herself together while Papa was alive… he was sick and in and out of hospitals. At one point he was in a hospice care facility, where we eventually (at his request) checked him out and brought him home. He passed away on a beautiful, sunny afternoon in April in his old, dirty, green recliner that he never let Grandma replace. It’s what he wanted.
Once Papa passed, there were no more family members for Gran to take care of. Her children were grown, her only grandchild (me) was grown and had long-since moved out, Gran’s mom and Papa’s mom has passed away many years before and now my grandfather had moved on to that great fishing hole in the sky.
Grandma no longer had much incentive to “keep her head on straight”. Once her husband of 58 years passed on, she began her decline in earnest.
I say she began to decline in “earnest” but actually it was slow at first. We noticed issues but chalked it up to grief or old age. It was simple things like subtle changes in personality… she tended to lose her temper more often. She began to forget where she put things and started having trouble finding a few words. Once she began having trouble remembering recipes and leaving the stove on, Mom decided it was time to move in. She sold her home, most of her belongings and moved into Grandma’s house.
Thus began my mother’s long journey as the main caregiver of an Alzheimer’s patient. It wasn’t so bad at first…. Gran needed a little help. She couldn’t drive anymore and Mom was lucky enough to have a job that allowed her to clock out at 3:30 in the afternoon. She took Gran to her doctor’s appointments, took her shopping, cleaned the house, etc.
In 2003, I moved to Maryland to find employment and three months later Mom called to tell me Dr. R had given Gran the AD diagnosis. He gave us some great advice but he also told us that we were in for the long-haul, and that this disease would not get any better and in fact would get worse.
He was correct. Over the next three years Grandma declined to the point that Dr. R prescribed Xanax and anti-depressants for my mother. Mom had no life other than work and being Grandma’s caregiver. She would get up at 4am, drive to work, get off work, drive home, fix dinner for Gran, clean the house, do the laundry, shop for groceries, go to doctor appointments. And all the while my grandmother snapped at Mom in anger and resentment. My mother could do nothing right.
It began to take a huge toll on Mom and in 2006, although I loved my job and my life in Maryland, I decided to pack up and move back home to Texas. I rented a small apartment and every few weekends Mom and I would trade places. I would go stay with Grandma while Mom stayed at my apartment and tried to regain her rest and her sanity.
For awhile it worked.
I could tell you all about the hundreds of little things that happened, each one shocking to us in their unexpectedness. Like the time my mild-tempered, sweet Grandma got angry and threw a glass into the kitchen sink and broke it. Or the time Grandma came into the kitchen sobbing and wanted to go right NOW to the cemetery and visit her parent’s graves. Like the time I was with her in the grocery store and she kept trying to pay with her Social Security card and when I finally had to take her wallet and give the proper credit card to the cashier, Gran screamed at me in the grocery store line. Or the many times Grandma would get angry at us and lay in her bed for hours, crying and saying she just wanted to die.
I could go on and on, but I won’t. Suffice it to say it was a miserable experience for us all but mostly for my mother, who continued to bust her ass as the main caregiver but was constantly and consistently berated by Grandma for all her efforts.
It was heartbreaking but we were determined to keep her at home as long as we could. I think we all secretly hoped Gran would pass away quietly in her sleep before we had to make the heart-wrenching decision to put her in a nursing home facility… before this fucked up disease could completely claim her mind.
In late 2009, six years after the official diagnosis, Gran began seeing things. She complained about the children in her room, said they kept moving her stuff and they wouldn’t be quiet. We weren’t entirely sure how to handle this but we’d learned enough not to try to convince her they were not there. We asked her questions about them… who were they? What were they doing? We suggested that Gran just tell them to go away and leave her alone. After several months of this, Gran began to wander at night. Mom worried she would leave the house and we began “child-proofing” all the doors, placing locks high up where she could not reach them. Dr. R suggest we place black mats down by each door because for some reason Alzheimer’s patients will not see a black mat, but a black hole that they think they’ll fall into.
Eventually, in an attempt to help with Gran’s hallucinations, Dr.R prescribed an antipsychotic called Haldol. BIG mistake, as it had a profound effect on poor Gran. She became disoriented and violent, even going so far as to take swings at my uncle and my mother. After three weeks on the Haldol, we called Dr. R and said we were by no means going to continue to give this drug to Grandma. He prescribed Xanax for Gran at night, to make her sleep and stay in bed. The violent episodes stopped and Gran became a shuffling zombie.
Around the time of the Haldol episode, my mother’s health began to decline. She was exhausted, run down, emotionally-spent. I could see it in her eyes, hear it in her voice.
It was me. It was me. I’m the one that said “It’s time for a nursing home.” Me, the person whom Grandma loved unconditionally, with no strings attached. My protector, my champion. And I’m the one that said “It’s time.” My head knows that it was the right thing… the only thing… that we could have done. But my heart will never forgive myself.
And no one fought me. It was time and they knew it. I could not stand to see my mother decline mentally and physically and Mom would not be the one to say it. My uncle would not say it.
But they knew. And thus began yet another chapter in this unwilling journey of ours. The nursing home search and the subsequent moving of Gran to the facility is another story and one that’s hard to tell. It was the hardest time of my life, I think. Hard for all of us.
I will chronicle our search for a nursing home in my next entry. I will also chronicle the financial issues we encountered as well as the fucked up process of Medicaid in the state of Texas, as well as VA benefits that I wish I would have known about before it was time for a nursing home.
And if you’ve made it this far into the story, I thank you for listening.