The Last Time I Saw Ila Jean

Hello friends. I have been away from the blog longer than I planned or wanted to be. That is mostly due to the fact that Ila Jean has been in decline. She needs more care now than ever. She cannot stand on her own, that is, unless it is the middle of the night when I’m asleep or the ten minutes I leave the house to run an errand. She then finds the strength somewhere from within to get up long enough to wreak havoc or fall out in the floor. She rarely says anything that makes any sense to anyone anymore. Before I felt I was taking care of someone I knew and cared for, even if I often didn’t like her. Now I feel like I am taking care of a stranger most of the time. I certainly have been a stranger to her in the last few days.

The night before she took this turn for good however, she had a window of clarity, and we had quite an eventful exchange. She had been a royal bitch, yes I said it and it’s true, and her vitriol had turned from general to very specific and very personal. Without going into details, she yelled at me, I yelled at her, some awful things were said by both parties. Then we both broke into sobbing for the next half hour. Then something happened. We began to talk.

The next day, my mother would tell me how much granny had went on and on about our wonderful conversation. Even in her limited mental state, it had had stuck with her.

Ila Jean said that she didn’t know me at all. Several weeks earlier, near the beginning of my care for her, she had said, “I like you.”

“I like you too,” I replied.

“No, I mean I really like you. In the last couple of weeks, I feel like I’ve gotten to know you. Before, you were just someone who was related to me. But now I like you.”

“Um…thanks?” This was news to me. It’s not as if we had been strangers who only saw each other every few years.

So this recent evening, she was mourning the fact that we didn’t know each other. “Well, what would you like to know?” I asked.

“I don’t know, anything.”

I searched my brain for anything that would be of substance, but appropriate for grandmother ears. There is a lot that is not appropriate for grandmother ears.

“Well…” I stalled, “I was in a movie that recently premiered at the Chicago International Film Festival,” and I waited to see if she would take the bait or dismiss it as some silly hobby.

She perked up slightly. “Well that’s something. I guess. Isn’t it?” She really didn’t know.

“Yeah, I think so. I mean, it was just a small part. Not a big deal.” I was already undercutting myself as I always do. Then I decided to test the waters. What the hell. Nothing left to lose. “Are you ready to be shocked?” She nodded. “I played a sex addict.”

And for the first time in my life, I heard that woman laugh out loud. Head thrown back, full gusto. I think it would be fair to say that she shocked me more than I shocked her. I guess she had the last laugh.

And it makes me mad.

Because as soon as we had found each other, began to get to know each other, as soon as I had started to see this other human being sitting across from me and the life within her, she disappeared again.

Ila Jean, Movie Star

I sat down earlier to watch None But the Lonely Heart with Cary Grant on TCM, which of course didn’t last long, because, if you’re a caregiver, “me time” is practically nonexistent. But I did manage to get through the opening credits, which reminded me of something that I had discovered while Ila Jean was in the hospital: that my grandmother, Ila Jean, without her teeth, is a dead ringer for classic Irish character actor Barry Fitzgerald.

Ila Jean?

Ila Jean

Barry Fitzgerald

Barry Fitzgerald

Uncanny.

 

My Granny the Junkie

The last few days, the last week, I don’t know, time seems so abstract these days, Ila Jean has been weeping uncontrollably. If she’s awake, she’s crying. I know part of it is the fear of death, understandably. The fear of being abandoned, the fear of the unknown. And I know part of it is the dementia—she cries over the state of the country, over the death of a woman she’s never met (the mother of my mother’s best friend). And also I wonder how much of it is the family curse creeping in on her as it has the rest of us. The depression, the anxiety, the panic attacks, the moods disorders that have disordered our entire family on her side, starting, as far as we’ve traced back, with her own father.

I’ve been feeding her Ativan like candy, and thank the medical professionals for it. And when that’s not enough, I move on to the morphine. I give her morphine less for physical pain, which she does have, and more for keeping her as calm and relaxed as possible. Our medicine cabinet is a pushers dream. Morphine, Ativan, Valium, Restoril, Hydrocodone. And sometimes it’s not even enough. I now have a dry erase board just to keep track of what I give her, and how much, and when.

  • Lesson #1 for Newbies: Get a dry erase board and keep a record. You will lose track of it all otherwise.

Alison

I christened the new house this evening the only way that is truly important: with music. For the last four days, granny has been in respite care. She comes back home tomorrow, so I decided to take a load of stuff over. Among that stuff was a stereo I haven’t used in years. Once I got it inside, I noticed that I had left a record—that’s right, vinyl—on the turntable. It was Elvis Costello’s My Aim Is True, a classic. So Alison was the first song to echo throughout the new house. I know, Alison. Of all the songs on the album, I pick the one you hear all the time. Hey, I happen to love that song. Probably the last time I listened to that album was in grad school. And even though I’ve heard that song many times since, listening to it on vinyl took me back. Back to a time when everything was completely different. I had hopes and dreams and all the time in the world ahead of me. That was a different girl. It hurt, no small amount, to go back there and to see where I am now. But I felt like me again.

Being a caregiver can rob you of so much. Of everything, if you let it. It can rob you of you. Your life becomes all about that other person, to the degree that you lose sight of who you are. You forget that you were once a person, who hung out with friends, who enjoyed life, who listened to good music. Do not forget yourself. When the needs of this other person consume you, call a friend, watch your favorite movie (Holy Grail always does it for me), listen to your favorite album. Or one you just really like a lot. One that maybe reminds you of better times. Yes, it’s sad. But it will keep you human.   

From My Prison Cell

When Ila Jean left the hospital, she was living in an independent living for seniors apartment building, The Parkview. It’s a beautiful place, once a hotel. I wish I had started writing the blog earlier, because that place is quite a scene, a Melrose Place for the elderly. Lots of strange and interesting people, lots of stories. Anyone who thinks that old people are boring and uninteresting, and I don’t just mean their past but their present as well, is wrong. As I said before, she was quite independent before the hospital and not at all after. She was living in a studio apartment, which would have been perfect for her, perfect for one. But the night she came home, it was clear someone needed to stay with her. So I did. And I never left.

So in this tiny, two-room apartment, we lived for almost two months. The kitchen became my bedroom. I slept on a cot mat, on the floor, in the corner. Apparently, the kitchen was located directly over a portal to hell, because it was at all times like a sweatshop. In the middle of December, I was still keeping the fan on and the window open just to keep it tolerable. The other room, her room, had to be kept at heatwave temps to keep her warm enough. I swear she must have no blood.

There was no internet, so my freelance work  came to a halt, and my online TESOL class was put on indefinite hold. And I, who uses the internet for everything, was cut off from the world. Thank you, tech gods, for my phone. I brought a TV for “my room” for some distraction, but there was no cable connection for that room, (no TCM!), and the reception with an antenna was next to nil (no PBS either). On Sunday nights, I would disconnect the cable from the other room and run it into the kitchen so I could watch my one joy, my one refuge, The Walking Dead (and Talking Dead) and not disturb Ila, who had usually just gone to sleep.

I rarely left. She needed to be watched like a two-year-old at all times, still does. The apartment became my prison cell, not much larger, food just as bad. Because I had little time to grocery shop, she continued to get meals delivered as she had before. And because she barely ate them, I ate the other half.

It’s a wonder we ever slept. The windows were old, and every time the wind picked up slightly, they would shake and bang all night like an enraged intruder was trying to break in. The garbage truck came daily, since the place creates so much trash. It usually came around four in the morning, crashing the dumpster against the ground again and again. Workers in the hall began socializing at the tops of their voices directly outside the door around 8 AM.

I had never been so desperately trapped anywhere, at any time, in all my life. I was ready to get the hell out of, well, hell. As soon as possible.

As of five days ago, we are now in the house my uncle found for us to rent. I have a bedroom, complete with an actual bed. A yard, two in fact, with a tree in each housing flocks of birds to sing me awake in the morning. There is cable and internet, or will be as soon as I set it up. And I am now more desperately trapped than anywhere, at an time, I have ever been in my life. Because at least Parkview was a short-term situation to suffer through until something better was worked out. But now, this is the long-term solution. I am chained to it, and there seems to be no getting out of it. No escape from this prison. None but death. Hers or mine. And some days I honestly wonder which it will be.

And thus, winter begins.

 

 

The Unknown

Being the good little student of dramatic structure that I am, I will not introduce you to our heroine by immediately inundating you with every detail of backstory you will possibly need, but will provide only what is necessary and allow the rest to unfold naturally as we go.

Ila Jean is dying. Or so we’ve been told. From what, no one is exactly sure. She was recently hospitalized for heart failure, which she has had but kept under control, for the most part, for years, and for pneumonia. Yet something happened to her during that month plus she was in the hospital. Perhaps it was the lack of oxygen to her brain—her oxygenation level plummeted into the sixty percentile range—but the woman who had been relatively independent a month and a half before, now isn’t. She was able to relearn to use her walker again, which she has used for years due to a stroke she had many years ago. But she is physically much weaker, and her cognitive abilities have left her unable to live alone. That’s where I come in.

So after over a  month of hospitalization with no idea about why she was so ill but many theories, her doctor released her, putting her into hospice care. Which meant, officially, she was dying. And, officially, her terminal diagnosis is heart failure, though he put forth several other possibilities, including leukemia, which was the one that stuck in her head and consequently is the one she is convinced she is dying of, though we have little to support that. He, of course, wanted to do tests, but she, wanting nothing more than to just go home, refused. So he sent her home, and that’s where we stand. To make a long story short.

We have no estimation of how much time she has left. We have no idea of how she will go, or what will happen when it is her time to go. This is the thing that keeps her up at night. This is the thing that makes her sob at the drop of a hat. This is the thing for which I have no other words of comfort other than, “We will make you as comfortable as possible when it happens.” It is the not knowing.

…and the world changes…

And the world changes. Something one of my former acting teachers is fond of saying. And it does. On this, the second day of this blog meant to explore life and death–specifically the life and death of my grandmother–life and death continues to happen all around. So I guess you could say the world doesn’t change. One of my dearest friends on earth, Annie, became an aunt for the first time today. To a round, pink, beautiful little thing by the name of Gemma Lucille. Isn’t that a wonderful name? And today, another friend, Vlad, lost his mother Rita. Like me, he was taking care of a loved one who could no longer take care of herself and was at the end of her life. We are helpless when we come in, and we are, not always but often, helpless when we go out. For all of you out there who have stepped up to make the end of someone’s journey through this life a little bit easier, thank you.

DAY ONE

Actually, it’s day 52 of taking care of my grandmother, Ila Jean. It is day one of this blog. Until just now, I had no idea it had been as long as 52 days, though it feels it’s been years.

It may seem premature to title a blog The Life and Death of Ila Jean Brown when the title character is still alive. It may seem a bit morbid. Perhaps it is. However, this will be the story, not only of the life she has lived thus far, but also of the journey to the end of that life. And my journey along with her.