I recently went through my mom’s rapid illness and death. Initially, we thought mom had some pain issues or heart issues, or respiratory problems or arthritis. After going from specialist to specialist and back to the general practitioner and back out again to even more specialists, we finally came to the awful discovery that mom was suffering from dementia.
Growing up, I never had to crack a dictionary if I didn’t want to. Mom knew the definition and etymology of every word. Her penmanship was perfect. She could add columns of numbers quickly and put out a spread sheet that looked like Excel in cursive. She could organize any group of parents, neighbors or citizens. This woman had a sharp mind, made sharper by an army of nuns some of whom also played basketball – I love that image.
My mom also came from a family of round folks who fried and frosted anything that stood still. She had a massive heart attack in her 50’s. They found then that she had genetically malformed arteries throughout her body. My mom would probably die of a fried chicken induced heart attack. She would NOT lose her sharp wit, her well-exercised mind. That’s what I thought.
From September 2008 to January 2009, my mom’s mind moved through the stages of Alzheimer’s at a pace that amazed all her doctors. It left us running after her down the street as she ran away from caretakers and explaining why she could NOT brush her teeth with Bengay or use Fix-a-dent as hair gel.
I became my mom’s caretaker. My brother and I tried to care for her every need as she declined. He took care of all the money and business and I took care of her emotional and physical needs.
My mother’s first hospitalization during her illness caused her to completely lose her speech, ability to walk and eat. We learned that this is not unusual for dementia patients. I had never seen or heard of this before. I requested every test. I read every report. I pursued every specialist. I read everything I could get my hands on. I did not leave her until I had to ask for help so I could go home and sleep. After days of testing, exam after exam, waiting for reports, waiting for diagnosis, I realized that after three days, she had not really eaten or had very much fluid. I asked a nurse what they were going to do about getting her fed and hydrated. Honestly, they acted like they hadn’t even thought about it.
This was the first time I realized that the elderly, and particularly the demented, often were allowed to deteriorate because of this little thing called “quality of life.”
I admit I was very naive about this; although, my mother was very adamant about this all her life. She had a living will, a health care directive and had discussed all this with my brother and I. She did not want to be a burden. She did not want to be a vegetable. Honestly, she made all kinds of brave statements about the fact that she wanted a “quick” death.
Here’s the problem: She was demented now. If she could be physically healthy, but her mind was lost, what did that mean? She wasn’t a “burden” to me. I wanted to care for her. She wasn’t a vegetable, or she wouldn’t be if the doctors and hospital would give the care she needed, even if it was difficult and she wasn’t very cooperative.
She had money, she had a slew of insurances and insurances for her insurances. So now what?
I wasn’t getting the many different hints from the nurses and doctors when they would ask me about what the family’s wishes were for her “quality of life.” I am of the opinion that Life is Life. The quality or the determination of “quality” was not ours to decide. I kept asking about her nutrition needs and hydration and they kept sending people in to talk about “quality of life.”
I finally realized that while I was asking them about when and how they intended to feed and hydrate my mom, they were trying to get me to decide IF I REALLY WANTED TO FEED AND HYDRATE HER! I was mad! Yes, feed her! Yes, hydrate her! I don’t care why you can’t figure out what’s wrong with her; give her what she needs to live! She and I will figure out the rest!
I could understand not relentlessly beating on her chest if her heart failed while in this condition, I could understand not hooking her up to a machine that would function for her, but she was not hooked up to anything. She just couldn’t talk or stand up. Only weeks earlier she had put in a brick pathway in her backyard! Her house was immaculately clean, she did everything herself.
Unfortunately, as the days and weeks went by, she continued to suffer setbacks with her heart and multiple simple system failures, nothing huge, but they were cumulative. Mom declined in her mind more every day. But she also spent time with her family, talked with her grandkids about that which was very clear to her – her childhood. The kids loved it. Especially since much of it was uncensored because of her condition. (Stories for another time.) Her sister came to see her. She had some really nice days. She blessed us, we blessed her. Quantify that!
My experience makes me very concerned about the rationing of healthcare. The doctors and nurses who only knew my mother as a seriously demented woman with multiple health problems, had their own opinions about what kind of “treatment” she should have and thereby how long she lived. As her daughter, I knew HER. Days and months didn’t matter to them: They matter to me more than words can express.
Through all of the medical mazes that mom and I passed through during her illness, in the end, I was usually right about what she needed. The doctors looked at their charts; I looked at my mom’s eyes. The insurance company looked at the bills, I looked at a woman who wanted to eat Fry’s macaroni salad and have her nails painted, even if she couldn’t remember the word “pink.”
Although her last days contained unimaginable difficulties due to the cruel damage to her brain, they also contained much laughter, sweet kisses, heart-melting confessions, and life-changing secrets revealed. I would fight to the end for those days. My heart will heal from the pain, but my heart would not be as full now without all of it.
The government should stay out of these decisions. I would fight. I will fight. Whatever it takes.
