Dying in Dementialand

I pulled up at a nursing home in an impoverished part of Kansas City. It was 2006–before GPS was commonplace. I had printed out Mapquest directions to find this place. It didn’t help that it was raining, almost 11 pm, and that the nursing home was tucked behind an authentic hole-in-the-wall Mexican restaurant and one of those Payday Loans joints, but I found it.

I was part of a new volunteer program that a hospice in the area had started. If a nursing home resident was “actively dying” (a hospice term used to describe what is typically the final 24-72 hours of life) and didn’t have anyone to be with them, we were called. I had taken the 11 pm to 3 am shift with a women dying of Alzheimer’s.

Although often people don’t understand that Alzheimer’s can be a cause of death, it is a terminal diagnosis. Many people pass away from other causes before Alzheimer’s kills them, but at some point Alzheimer’s degrades the brain to a point where it can no longer provide support for functions like breathing, swallowing, and fighting infection. That was the point my hospice patient had reached. Her body systems were shutting down due to Alzheimer’s.

Her name was Opal. Actually, that wasn’t her real name. I’d like to say I changed her name to protect her privacy, but the fact is that I don’t remember what her name was. And I feel like a horrible person for not remembering her name. After all, I was with her on her final journey, and that’s pretty significant.

Opal was an African-American woman in her 70’s who didn’t live in a great nursing home. It was dirty, and it smelled awful. If a horror movie were set in a nursing home, it’d be this place.

And just when I thought things couldn’t get more eerie, I saw a large rat. Upon closer inspection, I realize it wasn’t a rat. In fact, it was a small-ish shaved cat. The nursing home liked the idea of having a cat but knew some people might have allergies…. It was perhaps the creepiest-looking cat I’d ever seen. I termed it “Rat-cat.”

I found out that Opal had a daughter living across the country who had visited several weeks ago. Her daughter had been notified that Opal was passing away, but she couldn’t make it back. According to the hospice volunteer coordinator, the daughter had said she saw no point in coming back because Opal wouldn’t know she was there anyway.

Opal hadn’t recognized anyone for several years, and she’d been unable to speak for quite some time. There were some greeting cards taped to the wall behind her bed. I felt guilty about snooping, but I read them anyway. Most were religious cards that appeared to be from cousins, nieces, and nephews. One note mentioned that the sender had included a gift card to Walmart. I’m pretty certain that Opal hadn’t been up for shopping for quite a while. Except for her daughter’s recent trip, Opal hadn’t had any visitors in months.

For tonight, Opal had me. She seemed comfortable but not at all alert. Her eyes were slightly open but she didn’t seem to be able to see anything. Her breathing was labored and they had her on oxygen.

My job was to make sure she seemed peaceful and to alert the staff if I felt she was in pain or distress. More than anything, I was there to make sure she didn’t die alone.

A young nursing assistant stopped in frequently to check on her. My original prejudices about the nursing home were challenged by her cheerful and efficient demeanor. She was amazingly gentle in repositioning Opal and kind in talking to her. The nursing assistant told me to come find her if “things start changing.” I knew what she meant.

I spent most of my time sitting in a chair by Opal’s bed. I didn’t talk a lot. The TV was on when I came into the room, so I left it on and stared at it mindlessly for a few minutes at a time. There were a couple of books of devotionals on Opal’s nightstand, and I thumbed through them without really reading. At one point, I did start reading something from the devotional books aloud, but it didn’t feel right so I stopped.

The nursing assistant mentioned that Rat-cat tended  to frequent the rooms of residents who are dying, and sure enough it stopped by a few times. Mostly it just sat in the doorway and stared at me. I stared back.

I left that night not knowing if Opal even knew I had been with her. I slept a few hours and went to work the next day. I was signed up to go back the next night but had a feeling she would pass away before I got there. However, Opal was still around at 11 pm the next evening.

If you know me, you know I don’t do well on limited sleep. As I headed back to the nursing home, I was exhausted. I stopped to get a soda at a 7-11. Somehow I was distracted by the Slurpee machine and decided to mix the cherry and Coke Slurpee–something I did frequently as a kid but probably hadn’t done in ten years. And it was so good.

I brought it with me into the nursing home and stopped to see the nursing assistant at the desk. When I got to Opal’s room, I realized I had left my Slurpee at the nurses’ station. I had just greeted her by putting a hand on her shoulder and telling her who I was when I thought I’d retrieve my Slurpee, but when I took my hand off her shoulder, she made a noise.

It wasn’t something that indicated she was in pain, but it wasn’t a “good” noise. I put my hand back on my shoulder and she was quiet. I took my hand off her shoulder again, and she made the same noise–and continued to make it–until I put my hand back on her shoulder. She obviously didn’t want me to take my hand off her shoulder. She didn’t want me to leave. And, yet, I really wanted that Slurpee.

I said, “I am just going to the nurses’ station to get my Slurpee and will be right back. I will even run.” Despite her making the same noise, I took off to the nurses’ station in a full sprint. I grabbed my cup and sprinted back. I put my hand back on Opal’s shoulder, and she was quiet again. I sat with my hand on her shoulder while drinking my Slurpee for quite some time.

Rat-cat came and sat in the doorway. I wasn’t quite as creeped out by it the second night. In fact, I had gotten over the initial shock of his appearance and realize he was–in his own way–almost cute.

I wish I could tell you that Opal rallied, or at least that she opened her eyes and shared some departing wisdom with me. I wish I could share with you that I learned a life-changing lesson that would make me an infinitely better person from my time with Opal. I’d love to say her daughter called to thank me for sitting with her mom or maybe that another family member stopped in to say goodbye. None of that is true.

She passed away that night about 45 minutes after I left. Another hospice volunteer was with her. Unfortunately, the hospice failed to let me know, so I went back the following night. Rat-cat was there, but Opal’s bed was empty.

As I sit here nearly ten years later, I would give anything to remember Opal’s real name.

2 thoughts on “Dying in Dementialand

  1. You are a Slurpee-drinking angel. So glad you were able to comfort Opal in her final days.

    P.S. Somehow I left this comment on a previous post. Feel free to reject it. 🙂

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s