Alzheimer’s Disease

Easy Does It — SheLoves

July 11, 2015 By Diana

When I see the wonderful themes that come from the fine people at SheLoves each month, I am always surprised at what comes to me. This one is no exception. I’m not writing about my mom too much in public these days, but here are the most recent reflections. You can start here and follow this link to finish this piece and join the conversation. Please do!

The part of my life that needs me to be ‘easy’ right now happens to be the hardest one ever. My mother lives within five miles of our home and turns 94 this month. She loves it when I drop by, she smiles right through the telephone when I call her, she tells me I’m the most wonderful of God’s creatures, even though she is not entirely sure who I am.

Because my mother, in addition to being one of the loveliest women I’ve ever known, also has dementia. Her brain is deteriorating, week by week. She has lost most of her memory, including all 63 years of her marriage to my father, has only very limited mechanical ability of any kind, and more and more often, leaves her sentences hanging in the air after about three words, leaving me to wonder where in the world she was headed. When I am with my mother, what she most needs me to be is relaxed, present, patient, slow.

Too much of the time, I am NONE of those things.

Loving a person with severe dementia means you continually live with a large load of cognitive dissonance. In my head, I know that she cannot understand, cannot remember, and cannot move quickly, either physically or mentally. But with my heart? I want her to be as she once was: fast-witted, funny, vivacious, interesting, well-read, deeply spiritual.

Who she is now. . . is slow. Her brain is losing itself, day by day. Scientists do not yet understand all the complicated mechanisms that make this true, but this much we do know: the part of her brain that remembers things is disintegrating. The part of her brain that understands how things works, how time happens, what she said 30 seconds ago is almost entirely non-functional.

So when I hand her a napkin at lunch, she has no idea what to do with it. I say gently, “Put it in your lap, Mom.” And she moves to pick up the knife and fork that were just wrapped in that napkin, sending them to her lap.

Because she has always had a gift for sociability, and is a natural extrovert, she has maintained a semblance of those characteristics. She has a ‘routine’ that she follows when we are together. Ten times in ten minutes, she asks the same set of rote questions: How is your family? Have you found a church you like? Where is your husband? And the biggest one of all, ever-present: Do you ever think about moving?

“No, Mom,” I always say. “I like it here. We plan to be here until we die.” And some days, I swear to you, I want her to hear and understand that verb. I want her to grasp that she is dying, that I am dying. We are all dying. Most of the time, she hasn’t a clue. . .

Come on over and join us at SheLoves . . .

Filed Under: Aging, Alzheimer's Disease, Confession, Dementia, family, grief, personal journey, SheLoves

Missing Her, Missing Me

May 10, 2015 By Diana

Would it have been better not to try?
Outings are rare and exhausting for me these days,
but this is Mother’s Day, right?
And she is my mom,
my much-loved mom,
my disappearing mom,
losing pieces of herself from minute to minute.

I’ve been at home since the scary thing,
going out only for lab results,
a few groceries here and there.
My husband got the flu very late last week,
something neither of us needs me to deal with,
so we’re both on meds and holding our own.

Maybe I should have just called it a day
and talked to her on the phone.

But she misses me when I’m not there,
even though she has no idea how time passes,
cannot remember that I have been injured,
and doesn’t always know who I am.

She knows that she loves me. That I’m ‘wonderful,’
that I’m important to her.

So I went.
I stayed home from church to do it.
I carried a lovely big hydrangea,
a pretty new scarf.
My brother sent chocolate covered
strawberries, which we enjoyed after
the meal.

After lunch,
I scurried around her room,
making space for the flowers,
tucking the scarf in a very confused-
looking drawer.

And then we sat down for a visit.

Oh, it was a strange one,
one that stirred deep things in me,
including anger and tears.
Both of those have been lying around,
latent, contained,
for a long while now.
But occasionally, when ignited,
they flare and wound.

Before this stage of the disease,
my mother could often wield her
tongue as a weapon,
implying things with her wry,
sarcastic humor,
startlingly able to make me feel guilty
with just a word or two.

(Why do mothers have such power?
Do I?
Oh, I hope not,
I try not.)

She is restless.
My mother has always been restless.
She would like to move somewhere else,
and who can blame her?
She wants to go back to where she was
before we brought here her,
that fine place south of here,
that place where they would
have locked her into a small unit,
with no single rooms,
her friends unable to visit easily.

Back then, she and I decided to move her
nearer to me.
And most of the time,
that is reason enough for her.

And I should know by now.
I should know to just nod my head and say,
“It’s nice to dream, isn’t it, Mom?”

But somedays, I don’t seem to be able to do that.
I want her to understand,
to know why she’s here,
why she needs to be here,
why we’re out of options.

So I told her.
Again.
“Your brain isn’t working like it used to, Mom.
And I am so, so sorry. But this is a good place,
a place where they take care of you well,
and I am so near to you now!”

And then, out of the blue,
this line . . .
“Well,
I’m just sorry you don’t think
I’m worthwhile.”

And I lost it.

“What?? What did I possibly
say to make you think that?”

“Oh, you didn’t say anything.
I can just tell.”

How could she possibly tell?
She can’t tell the time, the date,
the place, the people.

But this, she could tell?

And then it came,
lancing through me,
soul and sinew:

“You never invited me to your home.”

I threw back at her the myriad times
she has been in our home,
the birthday parties over the years,
the long weekends,
the train trips,
the Christmas Eve services since
she’s moved here.

But I knew.
I knew what she meant.
She meant I never invited her to live here,
to be cared for here.

The very thing she told me
over
and over
and over again that she never wanted
to do.
Ever.

Truth be told, I know myself and our relationship well
enough to know that we would not survive it.

And yet, I carry it with me.
The guilt, the wondering, the heaviness.
To hear her say it literally knocked the
wind right out of me.

Lord, have mercy.
Give me grace to release all of this,
the anger, the guilt, the wondering,
the fear.

All of it.

It does me no good,
and it surely doesn’t help her.

I want to love her without reservation,
and to know she is safe in you.
I don’t want to wallow, waffle or wonder.
I want to feel anchored,
loving, loved.

So this is what I will choose to
remember from our time together today.
Walking from the dining room to her room,
she began to hum under her breath.
‘What ya singing, Mom?” I asked.
“When we walk with the Lord. . .” she replied.

And so we sang.
We sang loudly as I moved around her room.
First verse and chorus of that old chestnut,
the one that sums it all up.
Do you know the one?

It’s called, “Trust and Obey.”

Yes, yes.
That is what I will choose to remember
from this Mother’s day celebration.

Please, God.

Only that.

Filed Under: Aging, Alzheimer's Disease, Confession, family, Grace, Lament, personal journey, The Journey with Mom

After the Tears

March 31, 2015 By Diana

We are moving to the midpoint of Holy Week and I am feeling the loneliness of this season. The empty tomb awaits us, the glorious garden story, the triumph of Love over death.

But right now?

It’s dark in this heart of mine. Not without hope, no, never that. But dark, nonetheless. As I do every evening, I spoke with my aging mother on the phone tonight. Very briefly, as she cannot tolerate more than about 2-3 minutes without being overcome by confusion. As I said good night to her, the tears pricked.

Those tears.

I find them behind my eyes a lot these days. Watching a valiant, loved mother lose herself, piece by piece, is a painful and difficult process. There are days when it feels never-ending, when there is yet another jagged piece of reality thrust in both our faces.

I listened to an interview on the PBS Newshour tonight, a conversation with an author who tweeted his way through his mother’s death a year ago. He has now written a book about that journey and it sounds intriguing.

But as he talked, I realized that his journey was very different from the one I take with my mother. He lost his mother over a few days in the ICU, with her fully awake and cognizant until the very end. I have been losing mine for the last six years, watching her slowly unravel and as she herself put it last week, ‘losing pieces of myself’ from minute to minute.

Yes, the tears are ever-present in our journey. I find myself saying, “I am so sorry, Mom,” repeatedly. And there is a lot of repeating going on in our conversations now. In our regular 90-minute lunch together, I will tell her at least ten times that I am her daughter and she is my mother. Each time, she is delighted to say, “I never knew that.” I also recount each of the places she has lived in her long life, tell her that she was married for 63 years. “I was? I was married? Is he alive?” “No, Mom, he died ten years ago.” “Oh, no! Did I take good care of him?” “Oh, yes, Mom, you took such good care of him.” “Well, at least I did that right.”

Oh, sweet Mama — you did so many things right! So many.There is so little left, your story has become so very small.

Some days I wonder if there is any evidence of Easter in this sad story we tell together. Is there hope? Is there resurrection?

The answer is ‘yes’ — and I find Resurrection Hope by looking in two directions: directly out at who she is right now, and forward, to what she will be once the dying has stopped.

Right now, my mother is beautiful. She smiles at everyone, she says ‘thank you,’ over and over again. She tells me I am a wonderful person and that she is so glad to be with me. She cheerily greets all who pass us on our slow progression from car to restaurant, from hallway to recliner chair. She finds delight in the beauty she can see — the sunlight on her back, the distant view of the ocean, any small child she sees on our weekly outing. These things are lovely to watch.

The pieces of my mother that remain fairly shimmer with kindness, joy, hope, light. All of her life, Mom earnestly sought the face of God. And now that Face shines out of her eyes, sparkles in her smile, and echoes in her diminishing vocabulary. These lovely things are the seeds of resurrection. Such beautiful seeds — these are what I see when I look at the now.

And when I look ahead? What I see there is restoration, relief, refreshment, reunion. She talks about it from time to time, always with wonder in her voice, and I find myself occasionally praying for her release, hoping that she will fall asleep in her cozy bed, pictures of her family lining the walls, and wake up walking the streets of heaven, hand-in-hand with my dad.

I used to feel vaguely guilty about such prayers but I no longer do. I offer them with deep thanksgiving for who she was, and yes, for who she is. Even in this terrible time of losing and failing, my mother fairly radiates Easter Hope.

So, I’ll take her a lily on Sunday. I’ll kiss her on the cheek, give her a big bear hug and I’ll wish her a Happy Easter. And then, I’ll drive south with my husband, south to younger family, vibrant family, family she made possible, family she loved and who love her still.

And I will carry in my body and in my spirit the seeds of resurrection that my mother has planted deep in me, seeds of promise, of beauty, of hope.

Happy Easter, Mom. I love you.