The Deathless Death

Last week I shared with you my health scare. Luckily, the ultrasound found normal blood flow. There is one thing that still needs to be checked, but it was not nearly as bad as I feared. You see, one of my aunts had dementia, and since experiencing that, it has become one of my worst case scenarios and greatest fears.

Dementia is a ninja. Whether you call it specifically Alzheimer’s or more generally dementia, it is a ninja. It can be early onset, starting as early as your 40s or 50s, or it can wait until your 60s, 70s, or later. It starts out with just the occasional mental lapse here or there and—as a woman—it’s difficult to tell if it’s dementia or just the memory loss that comes with menopause. But if you have dementia in your family, every time you “lose” a word, or go blank on your PIN at the grocery store checkout, you panic and ask, “Is this it? Is it starting?”

I was in the military, so I wasn’t around my family of origin on a regular basis. When I got out and moved back home, I noticed that my aunt would repeat things. I attributed it to the fact that she lived in a small town, didn’t get out much, and had to recycle stuff in order to sustain a conversation. Besides, with two children in elementary school, I kinda had my hands full.

I stayed at home for a little over two years, and then we moved to Germany. I rarely spoke with that aunt, but I spoke with her oldest sister, Kathryn, fairly regularly. Aunt Kay started saying that Mable (my aunt with dementia) was under “stress.”  I could accept that: Mable’s daughter had died a year or so before, so … yes, stress. Mable had led a pretty sheltered life and now there she was, suddenly all alone, and without the daughter around whom her life had revolved for almost fifty years. From time to time Aunt Kaye would relate stories of Mable’s odd behavior, but having no previous experience with dementia, I made no connection. And Aunt Kaye never uttered the “D” or “A” word.

Then, in April of 2005, I got the call we all dread: I needed to come home because my eldest aunt was failing. Even though I was two days out of the hospital after a two-week stay, I was Frankfurt Airport-bound in less than 48 hours. When I arrived at the ICU of our local hospital, twenty minutes ahead of schedule, I was absolutely horrified to find Aunt Kaye (the eldest aunt) a mere shadow of her former self. Once so tall, confident, and strong, I was greeted by a weak, skeletal figure who weakly reached her skeletal arms out to me when I entered the room. A significant emotional event after a 16-hour Transatlantic trip and a six-hour time shift, I went home and went to bed.

The first time I saw Mable was the next day. She seemed like her old self. Then she said something a little odd, but she came back pretty quickly. But, the more time I spent with her, the more I noticed that something just wasn’t quite right. I couldn’t put my finger on it, but…

That’s when my cousin Patty just laid it all out. Mable had been diagnosed with dementia. She told us (my two sisters were there, too) about the nightmare Mable’s life had become. The most disturbing, to me, was that Mable had become nocturnal, and on more than one occasion had been found by the police wandering around. When asked what she was doing, she said she was looking for her daughter. Sometimes they would take her back home, yet at other times to the ER.

After Aunt Kaye passed, I had to go about the business of tying up loose ends so I could get back to Germany. We made an appointment to discuss Mable’s situation with her doctor, who turned out to be a condescending, uncaring sack of excrement who was more focused on putting us “uppity negroes” in our place than intelligently discussing Mable’s situation. When we went to see the attorney about taking care of Aunt Kaye’s estate, we tried to get a Power of Attorney for Mable, but the attorney refused to do it, even though Mable was there, was lucid, and agreed to it.

Aunt Kaye had lived in the family homestead with her youngest sister, Bettye, who is deaf. The reasonable solution was to move Mable back to the homestead with Bettye. But neither of them were having any of that. Bettye said she was afraid of Mable’s volatility, and Mable decided we were evil and plotting against her.

I had come home prepared to say goodbye to one aunt. I ended up saying goodbye to two. Mable was no longer there.  I thought I would be attending one funeral; it ended up being a double.

I don’t recall now exactly when Mable finally went into care, but I think it was 2005. I came back to the States early in 2006, but to El Paso, Texas, so I didn’t go home.  My cousin who had been visiting her at the nursing home died in 2009, so I had no real word of Mable after that. Someone sent me a picture of her in the nursing home: she was lying limply in a bed, her hair disheveled, her t-shirt rolled up under her breasts, exposing her stomach. She could have been dead or alive. However, in my mind that was no longer Mable. Her periods of lucidity had long since become more the rare exception than the norm, and she had retreated to her childhood. Very rarely, a little of Mable would peep out, but it was so rare and so brief that it would have been better if it had not.  Those brief moments just reminded us of what we had lost. It was a knife to my heart because I still believe that the “May-May” I had so adored as a child was still in there, imprisoned by this evil disease, but trying desperately to let someone know, “Hey! I’m still in here!”

One day in 2011, I received a call from the nursing home while I was in baggage claim at the Huntsville, Alabama, airport. In 2009, I had called the nursing home and told them they needed to transfer Patty’s role to me when I found out she was dying of cancer. They told me that Patty would have to come in and relinquish her role. I told them she was a little busy dying at the moment and probably wouldn’t be able to fit that into her schedule. I gave them my contact information and decided to let them figure it out for themselves. So, in late 2011, they finally did.

I didn’t recognize the number, but I recognized the area code. In a very matter-of-fact way, the woman on the other end of the line informed me she was calling to get authorization to do a hospice consult for Mable. You see, one of the things they don’t tell you about dementia is that not only does it steal your essence and your life memories, it steals every learned behavior. Mable had long since lost her ability to hold up her head and feed herself; by the time I got that call, she had forgotten how to eat and swallow. She was dehydrated and emaciated. But a hospice consult? Over two years of nothing and suddenly we need a hospice consult? No, I did not handle it well.

I received that call in early November. After a number of conversations with my sisters, we decided against the hospice consult. I decided I was going to go home for Thanksgiving to see Mable and say my last good-bye, even though she had died to me back in 2005. Exactly one week before I was going to head to home, the nursing home called me and told me she had passed. They asked me what I wanted them to do. My sisters and I decided to have our cousin, who is a mortician, retrieve her body and cremate her. We talked about a memorial service, but that never happened.

My daughter and I went home at Thanksgiving anyway, and I went by the nursing home to retrieve Mable’s things. The nursing home staff was very kind. They had an orderly roll out less than a dozen boxes the size of copier paper boxes to my car and load them in. I drove them back to the house, took them in and opened them up. There were very few of her personal items left. Most of it was clothes they had provided her as she wasted away—things she never would have voluntarily worn. Eighty-six years of living reduced to less than a dozen boxes because dementia is a ruthless thief.

To this day, no one has retrieved her cremains. They are with a family member, so I know they are safe and will not be abused. But, the bottom line: I feel no connection to those cremains. “Mable” died the deathless death of dementia long before her body gave up the fight.

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