Below is one of the first pieces I wrote about my mother’s dementia. At the time, I had no idea that we would only have her for another five or so years.
Today’s prompt is “Where will you be in 5 years.” Please excuse me if I don’t want to go there.
(This was originally published on Facebook on July 9, 2010)
The Twilight Zone
I think Rod Serling, the creator of The Twilight Zone, must have had some experience with a person suffering from Alzheimer’s. Some days, here in Cooperstown, that’s all I can think about – The Twilight Zone.
My mother is trapped in a very strange episode of The Twilight Zone. She is time-travelling from decade to decade, and it’s difficult to figure out where she is. She thinks she is 25 years old, but her face in the mirror tells another story. It must be frightening. She thinks she has a date to go to a dance, but her date never shows up. An old man claiming to be her husband does.
When she wakes the next day, she’s in a new place. Her husband is at work (he’s been retired for 11 years, but is at a meeting). The red barn across the street looks just like the barn that was across the street from their house (it is the red barn that is across the street from their house). “Whose car is that in that in the driveway? I need to borrow it,” she says, but it’s my car and I won’t let her.
Two days ago she was very worried about me. I was 6 years old and lost. I’m here with her; I’m not lost; I’m 50. Something doesn’t make sense, but she can’t figure out what it is. We move on.
The only constant in this Twilight Zone episode is orange marmalade. Orange marmalade is served at every meal – on hot dogs, on sandwiches, you name it. Orange marmalade – I really can’t figure it out. But I think I understand now what they’re talking about on the Food Channel when they refer to comfort foods. They’re talking about orange marmalade.
I think it has always been one of my fears that I will be trapped in The Twilight Zone. It was always such a scary show to me, because there would be that twist at the end – like M. Night Shyamalan had in The Sixth Sense. Reality isn’t what we’ve been led to believe that it is. For my mother, the twist doesn’t come at the end; it comes so often that it is dizzying. Another twist and another twist.
My father was reading Time magazine the other day.
“Can you read the date of this?” he asked me when I came in the room.
I squinted and read, “July 17, 2000.”
“So it’s current,” he said.
“No, Dad,” I told him. “This is 2017.”
“Well, it’s pretty current,” he said, “you know — it’s in our lifetime.”
I shook my head, not sure how to respond to that. The world has changed so much.
When that issue of Time came out, airplanes hadn’t flown into buildings. Airport security wasn’t a thing. Donald Trump wouldn’t be firing would-be apprentices for 3 1/2 more years and I doubt anyone would have imagined him becoming our 45th president. The first iPhone wouldn’t be released for 7 more years.
2000 was a lifetime ago. We had just gotten over the worries of Y2K. Mary was baby and Laurel not even imagined.
“So it’s current,” he said again.
“It’s in our lifetime,” I conceded, and went back to what I had been doing.
Later, he found me in the kitchen where I was prepping dinner. He was still holding that old issue of Time magazine.
“This is fascinating,” he said. “I’m reading an article about Alzheimer’s.”
It was, in fact, the cover story for the issue.
“I think I may have Alzheimer’s,” he said. He looked at me and paused before asking, “Do you think I have it?”
I stopped shredding cheese and turned to face him. “Well,” I said slowly, “you do have trouble remembering things.”
“That’s right,” he said. “I feel like my brain is squashed.”
That’s a description he has used a number of times. Rotten fruit and roadkill always come to mind when he says it – not a pleasant picture.
I looked at the cover of the magazine which compared the brain of an Alzheimer’s sufferer with a normal brain. His description may be more right than he knows.
I didn’t know what to say to him. Silence settled over us as we both stood in the kitchen.
He leaned on his walker, and finally said, “It was interesting to read.”
Interesting. Not sad. Not heart-wrenching. Not hand-wringing. Just interesting.
A dispassionate diagnosis.
And life goes on.
Every night I hear him whistling as he gets ready for bed. Sometimes he even sings.
O Danny boy —
The pipes, the pipes are calling.
From glen to glen and down the mountain side.
The summer’s gone, and all the roses falling,
It’s you, it’s you must go and I must bide.
Partly because Sam just sent me this awesome collage postcard from Hawaii:
Is that me waving from the surf?
And partly because the Fenimore Art Museum recently announced that in April they are opening an exhibit called: 50 Years, 50 Works, 50 Reasons. Maurice Sendak: The Memorial Exhibition
And partly because the word of the day is “lovingly” and this post has that word in it —
I’m reposting something I wrote in May 2012.
As a side note — I DO do New York City now, very sparingly. By bus.
When I stopped to see my mother on Tuesday, she was in New York City. Well, not literally, but, they were having another travelogue for the residents. Instead of Hawaii, however, this week’s destination was New York City.
I don’t do New York City. Every time I’ve driven someone to JFK, I’ve gotten lost, not getting there, but getting out. I’ve ended up in downtown Manhattan on more occasions that I care to think about. I am a country bumpkin through and through. I don’t do big roads. I don’t do big cities.
But my mother was in New York City in the safety and comfort of The Manor. Maybe I could handle that.
Anyway, I didn’t get to see her. My kids said, “She won’t know the difference anyway.”
Maybe that’s true, but I know the difference.
Since Maurice Sendak died, I’ve been thinking about Where the Wild Things Are. Little Max is so naughty that his mother calls him a wild thing. He’s not even remotely contrite about his naughtiness, yelling at his mother, “I’ll eat you up!” So she sends him to his room.
And off he goes, not only to his room, but to where the wild things are, and where he’s king, and where there are wild rumpuses and such. But he wants to be where someone loves him best of all.
Can you picture his mother tiptoeing into his room, after all his naughtiness? No, wait, backtrack even further. Can you picture his mother lovingly preparing a tray of food for him, things that smell good and are good to eat, making sure they are both delicious and hot?
She tiptoes into his room, but he’s not aware of it because he’s off where the wild things are. She leaves him a tray of food, a tray that says I’ll always love you.
She didn’t do all that so that Max would see the tray and say, “Wow, my mother loves me.” She did it because she loved him.
That’s what I want my children to know. I don’t go visit my mother because she’ll understand. I go because I understand, and because I love her.
So I stopped in to see my mother the other day, but she was off where the wild things are — New York City. I should have left her a tray of food.
In 2011, my mind was spinning with all the information being thrown at me. Bladder cancer. Catheter care. Chemotherapy.
That summer, my mother had been diagnosed with bladder cancer.
As if Alzheimer’s wasn’t enough. As if a second bout with breast cancer wasn’t enough. As if my father needing a pacemaker wasn’t enough.
In the midst of all this, I wrote a poem based on Milo of Croton, the legendary Greek wrestler who began each day lifting a calf.
Okay — not lifting a calf here.
The legend goes that by lifting the same calf every morning, Milo could eventually lift a full-grown cow or bull. I didn’t need to lift a physical cow, rather a heavy load of struggles, one that was increasing in size.
If I lift the same calf every day
Could I someday lift a cow?
It seems logical and sensible
But impossible somehow.
Somehow I become broken
And it’s more than I can take.
Will I see failure coming?
Or do I need to break?
Or do I need a break
From lifting up the cow?
Am I stronger then, or weaker,
When I start to bow?
To bow under the pressure that’s
So heavy on my soul
That the spirit and mind and body
All begin to show the toll;
When can I say “Uncle”
And deal with this no more?
I strain under the calf-turned-cow
My cheek pressed to the floor,
Trying to lift up the cow,
But the Lifter of my head
Says, “Let Me help. Stop a while.
I’ll put others in your stead.
“Let friends come beside you.
You can take a rest.
Trust Me; it will be okay.
I really know what’s best.”
But the habit formed of lifting,
Lifting, lifting every day
Is scary to give up.
Lord, show me the way.
During that time I felt God answering every prayer I ever prayed about knowing Him more, trusting Him more, and resting in Him more completely.
The funny thing about challenges is that the harder they are, the deeper we grow.
I couldn’t meet the challenges.
At least not alone.
I found myself clinging to my faith during that challenging time.
Faith is not a crutch as some might say. It is a Strength.
It’s also faithful friends — that hands and feet of Christ.
I wrote Milo of Croton 5 years ago — and I think I still haven’t learned to yield.
Remember when I said I would be rusty trying to write again? I was feeling that rust this morning as it seized up my writing gears.
Today I wrote a whole post, deleted half of it, wrote a little more, made a meme, considered dropping the whole thing in the trash, and then decided to just stick it in a draft folder. Here’s the meme, though —
Then I looked back to see what else I had written on this day in history.
Five years ago, I had written a book-review-ish post for a fellow blogger, Christine Grote. We had started blogging about the same time and visited each other’s blogs fairly often. Each of us was dealing with Alzheimer’s — me with my mother and her with her father.
We cross paths with so many people, especially in the blogging world. When I visited her blog today, I felt like I was visiting a long-lost friend.
Here’s part of what I published 5 years ago —
Dancing in Heaven — a sister’s memoir is a tender story of growing up with a severely handicapped family member. Christine’s sister, Annie, was so developmentally handicapped that doctors predicted she wouldn’t live past the age of eight. Through the love, devotion and tireless care from the whole family, Annie lived to be 51.
Christine weaves into the story the onset of her father’s Alzheimer’s. That’s what I had been following on her blog. Before Alzheimer’s, however, she had interviewed her parents about life with Annie. When she asked her father if he had any regrets, he said,
“The biggest regret I’ve got of the whole thing is that she cannot speak. Everything else I can deal with pretty much as it comes along.”
As I read that part, I felt a catch in my throat. His Alzheimer’s has taken away his ability to speak.
Alzheimer’s seems to affect people in very different ways. Some symptoms are universal — the loss of memory, for example. But my mother has not lost her ability to verbally communicate. She can be sharp-tongued and nasty. She can definitely communicate.
2017 note: My mother did eventually lose the ability to communicate. She rarely spoke near the end, and when she did, it made little sense.
Christine’s father has fallen into a silent world. He doesn’t speak often. As I read his quote about regrets in Dancing in Heaven, I remembered one of Christine’s posts about a communication break-through they had experienced using a whiteboard, Resolving a Quandary. How much more meaningful that post became knowing how precious that ability to communicate was to him!
Thank you, Christine, for your beautiful memoir. It is sweet, gentle, and encouraging.
In the intervening five years, Christine’s father passed away as has my mother. Today, when I visited her site, I saw that she had completed her book about her father, Where Memories Meet.
I guess rust can sometimes be a good part of the adventure. It made me slow down and help me reconnect.
“Fred” made the mistake of saying the words “crew cut” within hearing of the man with the clippers.
“Everybody has a bad haircut story,” I told him. “Now you have yours.”
What made the whole thing ironic is that “Fred” had just been to a conference from which he took away the importance of vulnerability.
“Failure is an event, not a person,” he told me, repeating a Zig Ziglar quote one of the speakers had used.
“Exactly,” I said, pointing to his head.
Every disaster, whether large or small, brings us to a crossroads. One path pretends the problem never happened and hides the challenge from all the other travelers. The other path is vulnerability and sharing the struggle.
My mother taught me the importance of vulnerability. I remember watching her after her breast cancer surgery. She had a full radical mastectomy back in the days when the plastic surgeons weren’t inserting inflatable boobs even before the radiation treatments.
Her prosthesis was external, a little mass of weighted jell that fit into her bra.
Which she got tired of and did without after some years.
My mother was not defined by her breasts.
Or her breast cancer.
She went to visit women who had had mastectomies before they left the hospital and faced the world.
“This does not define you,” she told them.
And she lived, a walking testament to life after breast cancer.
That open-ness, that vulnerability, helped me to start writing about her and her Alzheimer’s.
I think if she had fully understood, if her brain had not been fogged by dementia, she would freely given her blessing to the whole thing.
“Write about the incontinence,” she would have said. “Maybe it will help somebody else going through the same thing.”
She would laugh and say, “Write about that time when I tried to walk the two miles into town because no one would believe me that I needed to go to a meeting.” I walked with her, and Helen came to pick us up.
“Write about the funny things I said. And how you had to show me that underwear went on first, before the pants. Write about the marmalade.”
It’s not dishonoring to use tough situations so that others know they are not alone in what they are experiencing.
Clearly I’m doing this A-to-Z Challenge all wrong.
I feel angry.
And not kind.
I hung up on Time-Warner yesterday. Told them we were switching to Direct TV.
I’m not happy with them.
I posted a rant yesterday and almost immediately the person I ranted about contacted me. I was in the midst of a conversation with a different friend.
“I should have said something to her before I posted it,” I told my friend about my other friend — are you following this? Too many unnamed friends, I know.
But I knew the right way to handle the situation — and I didn’t do it. I posted a stupid blog post. (It has since been edited.)
This is how not to do things, kids. Talk to people who upset you. Don’t rant on your blog. Do as I say, not as I do.
I believe in handling things the right way and in kindness. Sometimes belief isn’t enough. We have to actually do it.
I’m working to memorize Isaiah 58, a chapter where God is dealing with a people who are oblivious to their sin.
“Look at me fasting,” they say to God. “Look at my sackcloth and ashes. Look how humble I am. Why aren’t you noticing any of this?”
And God says to them, “I really want you to be nice to each other. Don’t be grumpy. Don’t strike out at people. I want you to fast from your meanness. Put that aside instead of food. Undo someone’s yoke. Feed a hungry person. Invite a homeless person into your home. Sheesh!”
He didn’t really say the “sheesh” part. I added that.
But you get the point.
Can I just say here, in the depths of this post where few people will probably read, that life is hard right now? My father is struggling — and he doesn’t even know he’s struggling.
“You’re not thinking clearly,” my brother and I told him, ganging up on him to persuade him to have a medical test which may put us on a path to improvement.
“That’s what they keep telling me,” he said, in a tone that showed that he clearly didn’t believe a word of it.
It reminded me of a post that I had long since taken down. The post, from April 2011, had been called “Four Questions.”
It ends with kindness — which works for “K”.
****
Four Questions
Mom — April 2011
Question #1
I asked my mother this question one day when we were in the car, “Mom, do you know what Alzheimer’s is?”
She knew the answer. “It’s a condition where people can’t think sensibly,” she responded.
Yes, it is. It’s not a condition where someone doesn’t think sensibly. They can’t. And yet, sometimes, they can. Like being able to answer that question with a pretty concise response shows some sensible thinking.
Question #2
Yesterday my mother handed me a sheet of address labels that had come in the mail to her.
“These are for you,” she said.
“I can’t use these, Mom,” I told her. “They have your name and address on them.” I tried handing them back to her, but she pushed them over to me again.
“That way you won’t forget me,” she replied.
I felt a little ache in my heart at those words. “Mom, I won’t forget you,” I reassured. “Will you forget me?” I asked it, even though I already knew the answer.
“Oh, no,” she said. “I’ll never forget you.”
But moments later, she forgot that she had even given me the address labels and took them back to her pile of things. She removed one and stuck at the bottom of a note she had written herself about dinner with a friend. It was a dinner with a friend that had taken place months or years ago. She had forgotten. But she stuck the address label on the bottom of the note.
“This will help me remember,” she said. Oh, if only it were that easy.
Question #3
Alzheimer’s is a condition where people can’t think sensibly. The varying pieces of information that are constantly coming at us are no longer being filtered correctly in the mind of someone with Alzheimer’s. It’s impossible to make sense of it all.
When my parents were going through some of the clutter that had accumulated at their house, my father picked up a kitschy dog made out of golf balls. “We could probably get rid of this,” he said.
“Are you going to get rid of me?” she asked. With the filters missing, that was what she heard.
“You’re too valuable,” he told her. “We’re not going to get rid of you.” She still has value. She needed to hear that.
Question #4
In difficult situations, so many people show little kindnesses. With my mother’s Alzheimer’s, people have been so kind. Total strangers, long-time friends and family members have all pitched in to keep my mother safe and to make life easier for my father. I know my father appreciates it, but I often wonder if my mother is even aware.
Yesterday, she answered the unasked question I have had for a long time. Are you aware of all the things people do for you?
She was looking for my brother. “He’s up at his house, Mom, right next door,” I told her.
“That’s right,” she said. “He has been so nice. Every night he brings dinner right down to us so I don’t have to fix anything.”
Yes, he does. And his wife does. And I’m so glad you recognize that. Even if you don’t always recognize me. I know it’s because you can’t think sensibly.
I am the world’s biggest fan of quiet, well, one of them anyway. I love quiet and all the sounds of quiet.
It’s quiet in my home right now. I hear the fan from my computer and a few birds singing outside. Mary is in the kitchen pouring a bowl of cereal. It’s quiet.
My father ate a meal at the Manor with my mother the other day. He commented on how quiet it was.
“It was a lovely meal,” he said, “but nobody spoke at all during it.”
“Well, Dad,” I reminded, “they may be hard of hearing or have dementia issues.”
“There may be all sorts of reasons for it,” he agreed, “but it doesn’t change the fact that there was no conversation. It just seemed kind of strange.”
I tried to picture a table full of elderly people, focusing on their food and eating in silence.
Our dinner table is never silent. In fact, it can be a rather raucous affair.
As I thought about the quiet of eating, I remember sitting on our side porch years ago next to a box with Monarch caterpillars and milk weed. We used to tromp through the field and find dozens of the caterpillars, hiding on the bottom sides of leaves. We would gather as many as we could find and bring them home to watch the miracle.
A supply of fresh milkweed would keep them busy for days. If I sat next to the box in the quiet of the day, I could hear the small sounds of caterpillars munching.
Karl drew this caterpillar for me for Mother’s Day
munch…munch…munch
nom…nom…nom
squitch…squitch…crunch
When they had filled their full of milkweed, one by one they found their own private spot and hung upside down. Magically, they chrysalized into beautiful green and gold jewel boxes.
They hung in silence. No more sounds of eating. If they weren’t so beautiful, they would be easy to forget.
Then one day they turned black, and it seemed that hope was gone, but for the slight movement. A twitch here and there. I would wonder if I was seeing things. Slowly, the blackened jewel box would open to reveal a new creature with wet crumpled wings.
The Monarch miracle was one I never tired of witnessing.
It all began with quiet eating. Strength for the journey.
Is that what is happening at the Manor? The quiet eating, the gradual withdrawal into a private world, and then, when hope seems gone, the emergence into a new world.
I think there is a great, unimaginable beauty in shedding this earthly skin for wings.
When Maggie can’t find her fish, she carries a different toy.
“You’re the lady with the dog,” a woman said to me at church the other day.
“The dog with the fish?” I responded, half-questioning, half completing her sentence.
“That’s right,” she said excitedly.
Our dog is famous around Greene. She carries a toy, usually a fish, with her on walks. At Christmas, she carries a Santa.
And now I’m known as the lady with the dog with the fish. All my life I’ve been identified by others — Dr. Pollock’s daughter, Bud’s wife, Philip’s (or Owen’s or Sam’s or Helen’s or Jacob’s or Karl’s or Mary’s or Laurel’s) mother. It’s really okay — I kind of like being in the background.
The outdoor high ropes course at the Clark Sports Center in Cooperstown.
Yesterday, Mary did an outdoor high ropes course. She said, “There were two rules. The first was that you couldn’t call anyone ‘Hey, you’ so we had to learn everyone’s names. If we couldn’t remember their name, we were supposed to ask them to tell us again because it’s disrespectful not to try to learn someone’s name.”
“What was the second rule?” I asked.
“I don’t remember,” she said.
When we visited my mother at the Manor, she was still in bed. It was 11 AM.
“She’s being a stinker,” the nurse told us.
“Hi, Mom,” I said as I entered her room.
She turned and looked at me. “Oh, hi,” she said.
“Are you going to get up today?” I asked.
“Not yet,” she replied.
“Do you know who I am?” I asked.
“Yes, I know who you are.” She smiled at me.
“Okay, then,” I challenged, “who am I?”
“You’re Sally.”
What a sweet little pleasure to realize that she still knows my name!
She knows my name. I’m not the lady with the dog, or the one with a bunch of kids. She knows my name.
One of the most precious lessons I have learned (and am still learning) from my mother’s Alzheimer’s is not to take things personally. I have such a tendency to do that! When people say or do little things, and sometimes big things, that are mean or hurtful, I dwell on them. With my mother, when she scolds or is angry, I just tell myself that it’s her illness talking.
The other day, I found myself doing it again — focusing on someone’s hurtful words and actions. The thing is, other people may not have an Alzheimer’s problem, but they have a human problem. We are all so painfully human. Just as I excuse my mother with her Alzheimer’s, I need to excuse others because they are just people.
Grace, grace, grace — so abundantly given to me, I should be able to share it.
There’s a porcupine within me
That bristles up at certain things
And I cannot quite control it
Or the turmoil that it brings.
When frightened, angry, hurt,
The little spears come into play,
And they prickle and they stab –
They make people move away.
Sometimes life is lonely,
With this porcupine inside.
Sometimes I don’t like me,
And I want to run and hide.
Why can’t I have a bunny
Hiding inside me?
With long soft ears and fluffy tail,
Huggable as can be.
Why can’t I have a puppy
Hiding there instead?
With wiggles, fun and energy –
A thing no one would dread.
But no, I have a porcupine
That I must learn to keep,
And the lessons that he teaches me
Are hard and sometimes deep.
But the lessons that I learn,
Painful though they be,
Help me to grow in grace, grace, grace –
And become a better me.
Hot Dogs and Marmalade 