Monday, October 24, 2016

Do You Want to Go Home?


Jamie enjoying a smoothie for
breakfast in our new home, 10/12/16
Every day I put off writing these things because by evening I’m spent without one cent of effort to spare.  It’s 9:30. I’m in bed, having taken my last 300 mg gabapentin for myalgia, two ibuprophens for a toothache and a probiotic with the last dose of antibiotics. My head throbs achingly around the back of my neck, my ears are ringing louder than my fingers on these keys and all my neurons spark the same advice: Let go and watch something you can drift to sleep to. Think of your health. But my heart tells me, as it has always believed, that I have to let go of the comfort of my little dog and soft bed, and the expertly composed Siren song of entertainment… and write a few things down. 

Jamie is 63, tall, slender, graceful and soft spoken. I want you to know her as well as I do, so I write about her. But I don’t know her very well. I can’t learn anything much from her. She’s losing words at a rapid pace. Language is slipping away from her: expression and perception. They call it Progressive Primary Aphasia. I arrived at that diagnosis myself when I read an article a few months ago. Her caregiver Mary showed me the same article in a different magazine at the neurologist’s earlier this week when we took Jamie for an EEG. Not all those with PPA have Alzheimer’s, but Jamie has advanced Alzheimer’s with pretty bad dementia.

Seven months ago I came to live with her, because my Dad asked me to take care of her when he died, and he did. I’ve known her casually for about three years. In 2014 I took a trip to Nicaragua with her, my Dad and my cousin Jane from London. In Nicaragua Jamie had some difficulty navigating uneven terrain, and she couldn’t read at all, but she could find the restroom in a restaurant by herself if you pointed her in the right direction. She could laugh at jokes and tell you whether she liked the fish, choose something when browsing souvenirs, stroll for an hour in the evening air down the main street in San Juan del Sur. Pick a fight with my dad.

Just two years after Nicaragua, Jamie can barely speak. Barely understand. When she sits in front of the TV, even her favorite shows, she just stares at the floor in front of her. If you give her any kind of direction, like “Please sit here,” she doesn’t do it. She’ll just start to slowly walk away to who knows where. You have to walk her to the chair. If you say “Look at me,” or “Look at this,” while pointing at something right in front of her, she doesn’t look at it. She’ll turn her head in another direction instead, as if doing what you’ve asked, but it’s never what you’ve asked. She can barely use a fork. She usually eats with a spoon, or with her hands. She can’t move apples from a bag into a bowl, or take a dirty fork and place it into the dishwasher basket. Just six weeks ago she could do both of those things with a little help and practice. Not any more.

Jamie had a particularly lucid day today. Self-aware, she had commented at dinner, “I can’t walk.” I asked her “Can’t walk or can’t talk?” “Talk,” she corrected herself. She was more present and aware today than she has been in a while. We just started a new drug – and maybe it was doing something. I empathized with her lack of words and promised I’d speak slowly, and use fewer words. She liked that idea. I gave her the advice to try not to stress about friends coming over and talking too fast, but to work on sensing what the person is trying to do by talking, ignoring the complicated words they’re saying. Maybe they’re just being friendly. Maybe they’re simply saying “I love you,” by telling you about their day. When seeing the intention, the words matter much less. 

She appreciated my advice, nodding a little condescendingly – like, “I could have thought of that myself.” When she’s self-aware she’s the teacher, the authority. She was an economics professor for many years, and still naturally migrates to thinking she should be in control. That look should have clued me in that trouble was brewing.

She usually lets me put Andy Griffith on. and stays put while I take out the dog. She didn’t want me to leave her for 10 minutes tonight, however, so, surprisingly, she agreed to join me for a short stroll down the street.

I asked if she wanted to wear her slippers outside. “No.” I offered her clogs, she took them, walked into her bedroom and put them by her bed, then turned toward the door. I didn’t correct her.  She agreed with the light jacket I put on her, nodding so it was her choice. We slowly navigated the porch stairs together, eager pup leading the way.

After one pleasant block she became a little unsteady so I asked, "Do you want to go home?" She replied, “Yes. Better.” So we headed back to the house with Jasper, my Westie. I noticed that I had to sort of pull her as we got to the house. She reluctantly got to the top of the stairs and muttered something that I interpreted as, “Do you know these people?” I laughed it off, “This is our house.” She absolutely did not believe me and by the time we were inside she was having a full-blown melt down, which she hasn’t had in a long time. Maybe self-aware was not a good thing.

Now she’s the boss and she’s scolding me – eyes wide – demanding I take her home. She stammers, “You’re crazy!” Infers that I’ve kidnapped her, “You took me!” and asks about the other people in the house.  “Who’s here?!” For someone with very few words, she really can communicate pretty well when she has to. With broken sentences, gestures and expressions she lets me know that she is not going to stand for this.

I suggested getting in her nightgown, hoping she’ll agree that maybe she’s just tired. I let her do as much as she could herself because she was in a very independent mood. She struggled but managed to undress. I show the utmost patience helping her with her nightgown because I don’t want frustration to devolve the situation even further. I normally hold the nightgown so that the two holes for her hands are easily accessible and I guide each hole over its hand so that she barely notices I’m helping, then she raises her hands and slips it over her head. It’s a joint effort, as most things are, to keep her feeling good about herself. Tonight she fought my help, insisting her second hand belonged in the neck hole. I gently pull the neck off her arm and slide the other sleeve hole over it.
She was dressed for bed, but then, without a word, she proceeded to remove her Depends. This was her final gesture of defiance. She still meant all those things she had said – that I was the enemy in this shocking story of kidnapping and deceit. She hates those Depends (until they’re her best friend. It’s a hate/ humbly accept relationship). Tonight she didn’t complain, cry or argue – she simply took them off and left them on the floor.

I’ve raised six kids, so I know a tantrum when I see one, even without the yelling or stomping. So I gracefully slipped out of the bedroom and left her there, panty-less, her toothbrush by the sink loaded with toothpaste, waiting. I had moved on to the parenting phase, “So you want to play it like this? Let’s see how long you last without me,” and without a word, or any malice, I simply went to the kitchen to do the dishes. I paused every few minutes to listen for her. Finally the call came. “Come here.”
“What?” I called out, walking only a few steps toward her room.
“Come!” she said, a plea in her voice that I was happy to give in to.
Very quietly she said, “You’re right,” motioning me to come sit next to her on her bed. She put her arm around me and hugged me. “You’re right,” she said a few more times. What a relief!

“Did you brush your teeth?” She was proud that she had done it alone. She let me walk her to the toilet. She even dropped the toilet tissue in the toilet rather than on the floor. She let me put fresh Depends on her without a complaint, or even a sigh, one obedient foot at a time—toes pointing contritely as they slipped into their proper hole. She was trying to be good for me, and when I tucked her in bed she quietly told me she loved me.

Now normally there’s a big chorus of “I love you!” that goes on and on for about 10 minutes, both of us silly with how much we love each other. Tonight it was a humble gesture of gratitude that acknowledged a hurtful round of accusations. “You took me!” she had said – kidnapping was the only logical explanation for how she got here. Now, as I turned up the ocean waves to lull her to sleep, and I kissed her one final time, that single confession of love was the lifeboat I needed to continue believing we can keep doing things this way… a little while longer. 

October 24, 2016

Do You Want to Go Home?


Jamie enjoying a smoothie for
breakfast in our new home, 10/12/16
Every day I put off writing these things because by evening I’m spent without one cent of effort to spare.  It’s 9:30. I’m in bed, having taken my last 300 mg gabapentin for myalgia, two ibuprophens for a toothache and a probiotic with the last dose of antibiotics. My head throbs achingly around the back of my neck, my ears are ringing louder than my fingers on these keys and all my neurons spark the same advice: Let go and watch something you can drift to sleep to. Think of your health.

But my heart tells me that I have to let go of the comfort of my little dog and soft bed, and the expertly composed Siren song of entertainment… and write a few things down. 

Jamie is 63, tall, slender, graceful and soft spoken. I want you to know her as well as I do, so I write about her. But I don’t know her very well. I can’t learn anything much from her. She’s losing words at a rapid pace. Language is slipping away from her: expression and perception. They call it Progressive Primary Aphasia. I arrived at that diagnosis myself when I read an article a few months ago. Her caregiver, Mary, showed me the same article in a different magazine at the neurologist’s earlier this week when we took Jamie for an EEG. Not all those with PPA have Alzheimer’s, but Jamie has advanced Alzheimer’s with pretty bad dementia.

Seven months ago I came to live with her, because my Dad asked me to take care of her when he died, and he did. I’ve known her casually for about three years. In 2014 I took a trip to Nicaragua with her, my Dad and my cousin Jane from London. In Nicaragua Jamie had some difficulty navigating uneven terrain, and she couldn’t read at all, but she could find the restroom in a restaurant by herself if you pointed her in the right direction. She could laugh at jokes and tell you whether she liked the fish, choose something when browsing souvenirs, stroll for an hour in the evening air down the main street in San Juan del Sur. Pick a fight with my dad.

Just two years after Nicaragua, Jamie can barely speak. Barely understand. When she sits in front of the TV, even her favorite shows, she just stares at the floor in front of her. If you give her any kind of direction, like “Please sit here,” she doesn’t do it. She’ll just start to slowly walk away to who knows where. You have to walk her to the chair. If you say “Look at me,” or “Look at this,” while pointing at something right in front of her, she doesn’t look at it. She’ll turn her head in another direction instead, as if doing what you’ve asked, but it’s never what you’ve asked. She can barely use a fork. She usually eats with a spoon, or with her hands. She can’t move apples from a bag into a bowl, or take a dirty fork and place it into the dishwasher basket. Just six weeks ago she could do both of those things with a little help and practice. Not any more.

Jamie had a particularly lucid day today. Self-aware, she had commented at dinner, “I can’t walk.” I asked her “Can’t walk or can’t talk?” “Talk,” she corrected herself. She was more present and aware today than she has been in a while. We just started a new drug – and maybe it was doing something. I empathized with her lack of words and promised I’d speak slowly and use fewer words. She liked that idea. I gave her the advice to try not to stress about friends coming over and talking too fast, but to work on sensing what the person is trying to do by talking, ignoring the complicated words they’re saying. Maybe they’re just being friendly. Maybe they’re simply saying “I love you,” by telling you about their day. When seeing the intention, the words matter much less. 

She appreciated my advice, nodding a little condescendingly – like, “I could have thought of that myself.” When she’s self-aware she’s the teacher, the authority. She was an economics professor for many years, and still naturally migrates to thinking she should be in control. That look should have clued me in that trouble was brewing.

She usually lets me put Andy Griffith on. and stays put while I take out the dog. She didn’t want me to leave her for 10 minutes tonight, however, so, surprisingly, she agreed to join me for a short stroll down the street.

I asked if she wanted to wear her slippers outside. “No.” I offered her clogs, she took them, walked into her bedroom and put them by her bed, then turned toward the door. I didn’t correct her.  She agreed with the light jacket I put on her, nodding so it was her choice. We slowly navigated the porch stairs together, eager pup leading the way.

After one pleasant block she became a little unsteady so I asked, "Do you want to go home?" She replied, “Yes. Better.” So we headed back to the house with Jasper, my Westie. I noticed that I had to sort of pull her as we got to the house. She reluctantly got to the top of the stairs and muttered something that I interpreted as, “Do you know these people?” I laughed it off, “This is our house.” She absolutely did not believe me and by the time we were inside she was having a full-blown melt down, which she hasn’t had in a long time. Maybe self-aware was not a good thing.

Now she’s the boss and she’s scolding me – eyes wide – demanding I take her home. She stammers, “You’re crazy!” Infers that I’ve kidnapped her, “You took me!” and asks about the other people in the house.  “Who’s here?!” For someone with very few words, she really can communicate pretty well when she has to. With broken sentences, gestures and expressions she lets me know that she is not going to stand for this.

I suggested getting in her nightgown, hoping she’ll agree that maybe she’s just tired. I let her do as much as she could herself because she was in a very independent mood. She struggled but managed to undress. I show the utmost patience helping her with her nightgown because I don’t want frustration to devolve the situation even further. I normally hold the nightgown so that the two holes for her hands are easily accessible and I guide each hole over its hand so that she barely notices I’m helping, then she raises her hands and slips it over her head. It’s a joint effort, as most things are, to keep her feeling good about herself. Tonight she fought my help, insisting her second hand belonged in the neck hole. I gently pull the neck off her arm and slide the other sleeve hole over it.
She was dressed for bed, but then, without a word, she proceeded to remove her Depends. This was her final gesture of defiance. She still meant all those things she had said – that I was the enemy in this shocking story of kidnapping and deceit. She hates those Depends (until they’re her best friend. It’s a hate/ humbly accept relationship). Tonight she didn’t complain, cry or argue – she simply took them off and left them on the floor.

I’ve raised six kids, so I know a tantrum when I see one, even without the yelling or stomping. So I gracefully slipped out of the bedroom and left her there, panty-less, her toothbrush by the sink loaded with toothpaste, waiting. I had moved on to the parenting phase, “So you want to play it like this? Let’s see how long you last without me,” and without a word, or any malice, I simply went to the kitchen to do the dishes. I paused every few minutes to listen for her. Finally the call came. “Come here.”
“What?” I called out, walking only a few steps toward her room.
“Come!” she said, a plea in her voice that I was happy to give in to.
Very quietly she said, “You’re right,” motioning me to come sit next to her on her bed. She put her arm around me and hugged me. “You’re right,” she said a few more times. What a relief!

“Did you brush your teeth?” She was proud that she had done it alone. She let me walk her to the toilet. She even dropped the toilet tissue in the toilet rather than on the floor. She let me put fresh Depends on her without a complaint, or even a sigh, one obedient foot at a time—toes pointing contritely as they slipped into their proper hole. She was trying to be good for me, and when I tucked her in bed she quietly told me she loved me.

Now normally there’s a big chorus of “I love you!” that goes on and on for about 10 minutes, both of us silly with how much we love each other. Tonight it was a humble gesture of gratitude that acknowledged a hurtful round of accusations. “You took me!” she had said – kidnapping was the only logical explanation for how she got here. Now, as I turned up the ocean waves to lull her to sleep, and I kissed her one final time, that single confession of love was the lifeboat I needed to continue believing we can keep doing things this way… a little while longer. 

October 24, 2016