It's been a while.
Far too long since I've seen my mother break her way through this awful disease. Tonight she was here and it was heavenly.
We talked about how we are the lucky ones. The ones who are loved. Loved by our parents, loved by our siblings, loved by our children. We talked about how mysterious and immortal love is.
Our souls caught the wings of happiness as we listened to my daughters laugh, and laughed with them though they didn't know it.
She was here, and I was her daughter and her comrade and her sister.
I was one of the lucky ones.
This first post has been extremely difficult for me to buckle down and create. It's not that I have any difficulty writing out my thoughts - quite the opposite, in fact.
I'm the type of person who keeps a virtual journal saved in an obscure part of my computer under a ridiculous name. And, lest someone stumbles across it, it contains no names and is written in prose style rather than the typical "dear diary."
Frankness; not one of my strengths.
I had a revelation a few weeks ago, that helped me to understand my grandmother's brain better. It was such a strange feeling... even after I'd realized my imagination had taken over my reality, I couldn't shake the feeling that something was going on.
Allow me to precede this story by explaining that my grandmother often needs to get up in the middle of the night to use the bathroom. Thus, I am quite used to waking up during the night, and am typically quite sensitive to strange sounds.
One night a few weeks ago, something awoke me around 5:am. I still don't know what it was, as when I got up to check the house (I have a saviour complex; I believe I could single handedly fend off a burglar), everyone was still asleep.
All I know for sure is that after I awoke, in those few seconds when you're still trying to figure out why you're awake, I distinctly heard the sound of the front door being discreetly opened & closed. Now, I used to work at Starbucks, so I would often make this very noise when trying to get to work at four in the morning - so I know it well. But as I already noted, when I got up to investigate, the other three residents in the house were fast asleep. Not only that, but the deadbolt was thrown (a sound which I hadn't heard).
It wasn't until I got back to bed that I was confident I had imagined the noise. You see, as I was crawling back under the covers, I remembered that before awaking I'd been dreaming a sequel to a dream I've had before (sadly, this isn't strange for me) - and while the dream in and of itself isn't important, I realized that the door opening and closing was just one of many fragments of my dream that I still felt were real. even as I was pulling my covers over myself, I would've sworn that my hands were still wet from ruffling a friend's freshly-showered hair.
The point of all this is that while I have the sanity-synapse working to tell me I'd imagined it all and that the door hadn't really been opened and my hand wasn't really wet, my grandmother doesn't. She has an over-active imagination (always has), but the part of her brain telling her that what she just saw/did or heard/said was just her imagination doesn't work anymore.
Most of the time lately when I look at my mother, I want to cry.
I want there to be a place where this stops for her; a place where the sun breaks through the clouds and the greens are greener, the birds are busy with their odd little bird songs and the smell of the earth is fresh and clean.
Her eyes can see, but her brain doesn't know what to do with it. The range is about 18" away from her face. Her ears can hear, but her brain takes minutes to process what she hears, and again, it mostly needs to be inside that 18" periphery. Hmm, not periphery... it actually needs to be in front of her for her to understand it.
I expect the zone to get smaller as time passes. How quickly or how slowly that occurs is probably anyone's guess. H and I were talking about that as we drove home last night.
Even as her world shrinks, there are moments, hours, maybe even a day, when everything is almost normal. Her comfort in that is palatable even though she doesn't actually speak of it. Just as suddenly and unpredictably as clarity occurs, it disappears.
The words she says most often to us are still, "I love you."
Today we have a great adventure... I want to travel to the desert to see my new granddaughter; a Mother's Day gift to myself. I'm going to try to take my mother along. There are a few challenges.
First we have to get her out of bed. This is often much harder than it sounds. Sometimes she sleeps all day and I think if the house was on fire, it would take two of us to get her out of here.
Sometimes she wakes easily but refuses to dress. This is doable when she's chosen to wear her clothes to bed the night before. Weird, but doable.
It would be great if we could do some personal hygiene before we go, but that scenario often becomes so traumatic for her that expecting to follow that with an outing seems like abuse. Which of us is abused is unclear.
Then we have to get her to agree to go outside. Once outside, it's been easy so far to get her into the car.
She's only once tried to open the car door while we were moving, so things should go relatively smoothly until we get to the hospital (Isabella was a month early, so our first visit with her will be there.) Could someone please explain to me how she can easily find the car door handle when she can't find the bathroom door most of the time?
It's a hundred degrees in the desert today, so her usual decision to stay in the car will not be an option. Under other weather conditions, we could do the round robin thing where one of us stays with her, while the others visit, but today we just have to hope we find the opportunity to easily get her into the waiting room.
Will update later. Time to institute step one....
UPDATED 8:30 p.m.
Things went unbelievably smoothly including something that was incredibly touching...
We had a "Welcome to the Family" card for Isabella and one of the girls gave it to Nana to sign. When Nana asked what she was doing with it, the reply was,"You're signing it. It's for your brand new great grandbaby who was born Monday."
She signed it, "I love you. Nana"
She was walking around really well, though with her unsteady, drifting gait. She hasn't walked that much in almost a year. Six months ago, I 'd never had believed I see it again, but she's consistently becoming physically more stable since we've removed her medications. Risperdal was the first to go because her living situation no longer warranted it. Then slowly removed the Aricept because of concern of interactions with Melatonin which I really wanted to try her on. Finally we decided to end the Namenda as well because our observation indicated she had passed the point where there was value to her taking it. It was the right decision for her. She's much, much better all around than she was when we brought her home in January.
In my email this morning from Link2Care, Family Caregiver Alliance
The HBO four-part documentary, "The Alzheimer's Project" begins on May 10. California First Lady Maria Shriver, whose father has Alzheimer's, is an executive producer, and worked for years to get this on the air. The series is getting a multi-media push from HBO--including a website (at http://www.hbo.com/alzheimers/index.html), a book, YouTube videos and more. The documentary offers information on new research and approaches to AD, as well as a portrait of the emotional and personal impacts of the disease.
"I'm in my bed." she replies at 10 p.m. from the sofa in the living room. "You're sitting on the sofa, here in the living room. You'll be more comfortable in your bed." I say.
"I guess I know where I'm most comfortable, don't I?" says she.
So we begin another shuffle, Elle and I, to get Nana into bed for the night. We haven't found our stride quite yet; have considered the possibility that there's none to be found. Elle's much better at it than I am most days.
Elle uses persuasion most of the time- which aggravates my Cochise-style personality. I want to herd all of Nana's peevish inclinations and corral them into reasonable behavior. Sometimes it works. Sometimes "herding cats" is an accurate description of it.
She's saying "ouch" a lot these last few days, but can't tell me what's hurting. There are two possibilities: one is that she's substituting ouch for another word, the other is that she may actually have an invisible source of pain. Given that her pain threshold is quite high (meaning that things that would seem like they'd be at least moderately painful don't elicit a response) I need to find out what is true.
Challenge for the day-- good thing it's the weekend because it will probably take more than one--
There is a time in every healthy life when we are vibrant with the feeling that the best is yet to be. Our heart and soul sing with anticipation. For some of us that feeling may come only once or twice in a lifetime, for others it arrives afresh each new season, and a few of us, I imagine, find it every morning. The sensation is rare enough to be savored, yet familiar enough to comfort us that it will both pass and come round again.
Just as with those songs of joy, there are songs of mourning and loss each one of us has or will encounter.
For my mother, an Alzheimer's patient in her 83rd year, there are no more songs to be sung.
No choruses of joy.
No ballads of times past.
No laments.
Nana loved to sing. She loved worship; the contemporary choruses, and the old gospel hymns. She loved Dean Martin, Perry Como, Tennessee Ernie Ford, Elvis Presley... But just as her voice has nearly been lost to the words of her favorites, her soul has been lost to the music of life's emotion.
She's left with confusion - a world that makes no sense. Her thinking, or the part of it she can express verbally, appears to have been captured in a sinusoidal wind of partially formed ideas and concepts much of the time. Then, as if the winds suddenly ceased, she may speak with perfect clarity.
Hallucinations confound her now (and me when I first tried to find what was causing them). She's left with anger and paranoia. Strangely, when she's most paranoid, she often communicates most clearly. She doesn't forget words, and her sarcasm and cruelty is pointed and jarring.
When this happens I get angry. Mostly not at her, although when it first began a few years ago, anger toward her was an emotion I had to work through. But I'm angry anew at this disease that has stolen our songs from us.
Our days of heading east together on Interstate 10 and belting out Yellow Submarine at the top of our lungs have ended far too soon. But it's not only that. It's that what we're left with has nearly wiped out those crazy, happy memories, and I'm pissed.
There is perhaps no single reason to commit the words of our journey to cyberspace. There may not even be words to succinctly explain any reasons why I begin to write here.
At first, I thought I would write because it is what I do to clarify my thoughts: my therapy. I have a lovely journal created just for me to do that in, and I sometimes do. So why here? I need a mission statement.
The urgency remained -- "write! blog!" the voices in my head (heart?) compelled. I examined what I wanted to gain from the experience and prolonged the actual writing. No illusions of altruism permitted! I want something from it- what is it?
I want Elle to join me here. I want her thoughts. She is her grandmother's primary caregiver and there is no journey to be chronicled without her input. Okay, so I want to know what she's thinking, not just guess -- reason 2.
I want the rest of our family to truly understand the journey Elle, H, most importantly Nana, and I are on.
Nana has a family who truly care about her from their distance. But just as I would have done in their situation, they've taken advantage of the physical distance to create an emotional one. While I harbor no resentment regarding that, I'm going to use this opportunity to limit it. Reason 3.
I'm stopping there and forging ahead to the blogging. Three reasons are enough to stop procrastinating and start telling the story.
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