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The Final Curtain

by: David Moore

Not quite the last laugh…but

Despite finally losing her 13 year struggle with Alzheimer Disease…my mother found a way to make a grandiose exit. Pretty remarkable for someone who (like most A.D. victims) was nearing that final six week to six month stretch when they have trouble swallowing, spend each day in a fetal position and are usually under hospice care, whether that be in their home or as is most common…in a memory care unit. No one can convince me that the event I’m about to share was merely coincidence. Whether the plan was somehow crafted by my mother as a final show stopper or willed by God, the mere timing of it all eliminates coincidence.

We believe she enjoyed her last weekend before becoming unresponsive. She giggled, hugged and spent time being the imp that marked her new persona. By all reason she should have been oblivious to something pending that could derail our plan for her to die at home. Staying at home until the end was important to her…she endured 11 years of visiting her mother (almost daily) in a state run nursing facility. We don’t come from money and sometimes that means placing a loved one in an environment that you wouldn’t wish on your worst enemy and it scars all involved.

My sister took my mom to her house that final weekend, she lived 45 minutes away and this wasn’t something that she did very often. Turns out my sister had an ulterior motive. For the past month or so she had been complaining about the amount of money that the hospice provider was billing Medicare. Although she spent a limited amount of time as a caregiver for my mom, she apparently knew best and threatened to end this nonsense. Forget the comfort I and the other caregivers felt (having someone else manage the medications, having nurses visit weekly, musicians playing and singing for my mom twice per month, a hospital bed and other helpful items that come with hospice care.) So unbeknownst to me my sister had set a doctor’s appointment for my mom early Monday morning with the goal of convincing her physician that she should be taken off hospice, she was fine and this was needless money the government was having to pay. Well…the best laid plans of mice and men often go awry.

At 8:00 Monday morning (as they drove to the doctor’s office 30 minutes away) my mom became unresponsive (a work of fiction couldn’t have it timed better)…five days later she passed away. My mom was forever the peacemaker. My sister and I did not get along, my brother (who died at age 42) and my sister did not get along, my brother and my dad did not get along…I’m sure you get the point. Dysfunction at its finest. My sister and I were about to embark on an epic battle. She would have done everything in her power (if she had gotten the doctor to agree with her) to end my mom’s hospice care and that would have been over my dead body, because after 13 years of being my mom’s primary caregiver, I needed every bit of help I could get.

After embarrassing herself at my mom’s doctor’s office the next stop was my house. We carried my mom in the living room and put her in the hospital bed. Hospice told us that this was it…she would not regain consciousness. Hospice provided morphine and Ativan that I  administered every 2 hours for 5 days and nights. They also visited daily and offered comfort…letting us know that my mom wasn’t in pain and we were doing all we could in her last hours. It’s pointless to focus on my sister’s actions and somehow I found restraint and didn’t berate her…which I would have thoroughly enjoyed.

Alzheimer Disease is a vial, destructive disease that kills the brain of its victim and also tries to kill the brain of the victim’s caregiver. My apologies for not giving credit to the author of that statement but it describes Alzheimer Disease explicitly. Family dynamics and economic status play a major role in anyone’s ability to care for a parent or spouse in their own home…but for one whom is stricken with this incurable illness no better gift can be given. Now – when I look back at granting her stay at home wish it’s a nice, warm and prideful feeling. I think how happy my mom must be with the way she was cared for and loved through the darkest of days.