I can’t find my friend Sheila. The one with the Texas sized heart and smile to match. Have you seen her? She is about 5’5” dark brown shoulder length hair. I have tried to reach her, but it’s hard to get through. The phone sometimes goes unanswered for days. And when they bring her to the phone to talk to me, I don’t hear the same vibrant, cocky, sarcastic, self effacing friend of over thirty years.
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We met over thirty years ago. I liked her instantly. She was playful and childlike with two grown sons. Her Texas born smile and heart made truth of the slogan that “Everything Is Bigger In Texas.” We had a common bond in a fellowship of mutual friends all over the world who seek a spiritual life. But it was MY world that Sheila walked into and I am so glad that she did.
I was in my late twenties which would put her in her late thirties or early forties. We laughed at the same things and had a bond like sisters or schoolmates who routinely get sent to the principal’s office for disrupting the class. That was my attraction to her. She could be serious when it was required, but she didn’t take herself or anything TOO seriously. Rule 62. That would have been the sign on our fort’s door if we had played together as children.
Sheila was the divorced mother of two strapping good looking young men in their early twenties. Toe headed surfer boys, living in Hawaii with their father. I got to meet them. They both had their mother’s bright smile.
At the time, Sheila and I were both single. She was dating someone she loved for many years while attending school to get her Master’s degree so that she could teach English, paying her way through school as a massage therapist.
Sheila was friends with a guy I had dated and broken up with and when he was about to have a date with someone else, Sheila let me know it and when she did, I called him. We resumed our relationship, which lasted 26 years before we divorced and had Sheila not tipped me off, there would be no 22 year old brilliant, witty, compassionate, beautiful daughter in my life, perhaps, had it not been for my friendship with Sheila.
When I was first married, Sheila came to live with us for a time before we had our daughter. Then life happened and we drifted apart. Sheila stayed in Tulsa, while we moved off to the suburbs of Bixby, had the kid, built the house, bought the van, got the yellow dog. And Sheila got her degree and taught English for about 15 years.
Sheila and I reconnected about five years ago. Literally ran into each other at the doctor’s office after about 15 years or so. She was not the same Sheila. She had put on 75 pounds which in my view was the exact weight of the grief and the loss she had suffered since we last saw each other. There was a sadness enveloping her. The sparkle was dimmed. And when she explained why, it broke my heart.
Sheila had been diagnosed with dementia. She explained, “I found myself losing my words in the classroom as I spoke to my students.” In addition, her sons had both grown up and developed severe mental illness. One, middle aged and living in a group home where she would see him regularly. The oldest had not been heard from in ten years. The last she knew, he was living on the streets of California. My heart broke at the news. First, that my friend had dementia and add to that that the two healthy, strong happy boys I had met had succumbed to the ravages of mental illness made me very sad for Sheila who upon this meeting was still teaching English part time and living alone in a one bedroom apartment with her cat. We traded sad stories as I was in the throws of depression going through my divorce after 26 years. And I was so glad that God had put her back in my path.
We began to see each other, when I could coax her out of the apartment. Sheila had become an introvert and at times more of a hermit. She could only take people for so long before she had had enough and was quite content to return to her cat and late night television.
And while Sheila was teaching students how to write, she was right for the job because writing was Sheila’s bliss. Quirky poems and prose that were over MY head, but it was indeed her gift. She had submitted her work to be published, but had been rejected and was timid to re submit the contents of the manilla envelope that sat on her kitchen table surround by small piles and lots of chotchkies.
Sheila was tenacious, precocious, gifted and blount. Don’t ask if you don’t want to know. And I loved her for that. She always told me the truth. Even when I didn’t ask. That’s a REAL friend and a rare find. On one of our dates, I had her over for dinner. She brought cookies, we ate and then watched a movie with Robert Redford and Jane Fonda about two widowed people who took solace at night sneaking into each other’s houses and sleeping together in a small, nosy town. We looked like Golden Girls folded into our places like two human tacos, as the most comfortable seat for the viewing was on my king sized bed with adjustable mattress. I will always treasure that night.
That was about three years ago. Then the phone calls started. “Are you awake?” She would say as I answered from my sleep at 5 in the morning. “Yes.” She didn’t really have much to say, just wanted to call. She was beginning to be less mindful of such things as time and timing.
Then the disease in her beautiful brain began it’s progression. Sheila was having trouble with math. She had been an accountability partner to me as we both had spending issues in our histories and she was tremendously helpful to me in that way for several months. And I had become a part of an audience to a show that I never bought tickets to. Alzheimer’s progression in a person I loved.
Over the months, her driving became difficult. She would insist she could drive. Then one night, on her way to my house, I got a frantic call. So I went out in my car, as she struggled to find the words to give me crosstreets or landmarks to lead me to her location in my neighborhood. When I found her, she followed me to my place and then limped her way home. Eventually, she had to give up her car as it was no longer safe and she was told not to drive, but would forget and drive anyway. That, or she was just being belligerent and wanting a Jamoca shake from her neighborhood Arby’s. The answer to which, I will never know. Because I may never see her again.
A year ago, I moved from my home in South Tulsa to a house four blocks from Sheila so that I could be a support person for her. Living alone in Tulsa with her family in Texas, I wanted to be there for her when I could. I was fortunate to make the cut, as Sheila had cut off at least one friend for being negative and heavy. That was NEVER an issue for me and Sheila. We continued to have lots of laughs, even at her condition. But the disease was marching on. And now she was almost agoraphobic. I did stand up comedy at a local coffee house before she stopped driving and she had come to support me. Before the show was over,( there were about a dozen acts in a room with about forty people), Sheila was somewhat panicked to be there. I think the stimulation was too much for her.
Whenever we went places, she was hypersensitive to sound and speed. Grabbing the dash when I went the speed limit, saying I was driving really fast. And her hearing was quite sharp too. If I ran water on the phone she’d say things like, “What’s all that racket?”
Then Covid19 came to town and Sheila was in for the perfect storm of stressors that healthy brains were struggling to cope with. No longer able to see her son because of Tulsa’s orders to “Shelter In Place,” he was not happy with her for what he could not understand and Sheila’s isolation had now become mandatory. Prior to Covid, Sheila had been getting out a few days a week to go meet our fellowship of friends. I was one of a few who would drive her to meetings and we would laugh our asses off in my car being silly and inappropriate together. But early this spring, that all came to a screeching halt.
And when I would call to check on her, she struggled to communicate and make sense. “They are saying that I can’t go outside.” She would say. So I checked with her family, and I went to get her out of the house. Fuck Covid. My friend was withering in her apartment. The only people she was seeing were her home health aids for a few hours a day. I took her to the Riverparks and we were both tense. Looking at a playground that was roped off with caution tape because there was an invisible serial killer in town. So we simply sat on the wall and watched the passersby. Sheila was visibly anxious, which made me so sad for her.
The phone calls became earlier and more frequent. Some coherent, some not. 5 am. “Are you awake?” The reprise that had become a routine. We would talk until she was done. Then it got worse. 3:30 am. “Lucinda?” She said in a whisper. “There are men in my apartment. They are going through my living room. I have to go.” Then she called back and spoke in her normal voice, saying that they were gone now. I was getting worried.
Sheila had begun to wander out of her apartment and go talk to her neighbors. I learned this after the only other time I took her out during the “Shelter In Place” order. I was going to pick up my curbside groceries so I made a date with Sheila to go get fried chicken and get my groceries. We drove thru KFC, laughed our way through two boxes of fried chicken and biscuits with honey and in our conversation, Sheila was in and out. I likened my conversations with someone who was losing their mind to Alzheimer’s as if she were a kite. With a normal conversation with someone not ill, I always knew just how far out from me the kite was. It maintained a steady path. With Sheila, one minute the kite was within reach, the next stuck in a tree. It was painful to be present for. And I’m not proud to say this, but some days, I was selfish and was not there for her because I didn’t want to bear witness to what was happening. I regret not creating a day that was just us while she was home. It was an idea that came to me that I did not put into action.
On the drive to the grocery store, he could see people who weren’t there. “Do you see that little person in the yellow pants?” She said calmly when there was no one there where we sat waiting for my curbside grocery order. And I was respectful in all of my replies. Always honest and matter of fact. “No Sheila. I don’t.” In my car, she saw people on my dash in the drive thru at the pharmacy, knowing that they weren’t there. Narrating her experience in front of me. “I see them but I know they aren’t there.” And we would laugh as we do, together, but when I took her home it was no longer funny.
My friend was getting sicker right before my eyes. After I got her into her apartment, which was quite a feat because she could no longer figure out how to put her key around her neck into the lock, I watched her take her evening medicine and I left feeling powerless and concerned. On my way out, I was stopped by the handyman who told me that she had gone to several neighbors asking them to help her get the people away from her who were following her. In one case, she had packed a bag and sat on her step, telling the upstairs neighbor that her sister was coming from Texas to pick her up, which was not true.
It never got better and she got mad at me because I was frightened for my friend and I sought wise counsel after learning that at some point she had wandered into a busy street found by the police thinking that her remote was her phone. They brought her home, which I later learned would never have happened if it weren’t for a pandemic. In a normal scenario, they would have taken her somewhere to be safe. I later called an ambulance after the phone calls got worse because while she had some home health care daily, there were still a number of hours that Sheila was alone, just steps from a busy street and I feared for her safety. Her family was in the process of getting her into a nursing home, an uphill challenge to make happen with a pandemic picking up steam. The advice that I got was to get it on the record that she was a vulnerable person by having the emergency crew evaluate her mental status to be sure she was safe to be alone. Naturally that frightened her. I arrived when they did, before I could tell her I had called them. And while she was confused about some things, being pissed at me was something she was very clear about. I left her that day. And have not seen her since. I believe that was at the end of April of the beginning of May.
Her road has been hard since that day. Shortly thereafter, she had to be hospitalized for psychosis and then was placed in a nursing home and when I was finally able to get someone to answer and bring her to the phone, my friend Sheila, as I knew her, was not present. Flat affect with some nonsensical babble, there was a clarity peppered in when she responded to me saying that I loved her, and she let me know she was not happy with me. And I think that was a clear thought. Which made me really sad. To think that her last memory of me would be one of feeling hurt or betrayed. She could not see the part where her safety was at issue. Several people who were concerned about her from her neighbors and then some had encouraged me to call for help. And I will be honest. I don’t know if I did her more harm than good. Because now, she is locked into a memory care facility where the phones don’t always get answered and the Covid quarantines are routine so that not only can she not receive visitors, she can’t even come to the phone..
I have made peace with the fact that I may never see her again as I am moving 800 miles away in just a few short weeks, but it is my prayer that she will forget about her anger for me and remember the friendship that we had before she forgets everything. The laughs. How I always saw her in the room. When others talked about her, I was talking to her. Because I respect Sheila. She is a person. With rights. And passions. And dreams. And a devastating illness. I love her. And I will miss her deeply.
Update: I posted this on July 5, 2020. On July 20, 2020 at 6:03 a.m., Sheila passed away. The week prior, she contracted Covid 19 in the nursing home where she had been placed. She was hospitalized with renal problems and signs of pneumonia in addition to testing positive for the virus. Within days, hear health plummeted. I received a text that she was on hospice, with pneumonia and kidney failure and the doctors had given her 1 to 2 days to live. While i was saddened by the news, I was not surprised. The weeks leading up to this, I tried to call her at the nursing home several times, only to be told that there were Covid positive cases there and that the residents were in quarantine. The caregiver that I spoke to on the phone said that she was confused and not terribly interested in thing s that might take her mind off the situation, like the coloring books her family and I had sent to her.
I have to say that while I had hoped to see her or at least speak to her to say goodbye, the Sheila I knew was already gone. And I am grateful that I got to have her for the time that I did. She touched a lot of lives with her child like spirit.
If you love someone who has Alzheimer’s, don’t wait. Make time for them a priority before you lose them entirely. Be willing to be uncomfortable around the disease that your friend or loved one has no choice in having. Because I know first hand, for the times that I was uncomfortable and said, “today, I just can’t,” I wish I had.