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.
The other day I walked into the kitchen at lunch to find my mother sitting at the kitchen table with some hot dog buns, a jar of marmalade, a brick of cream cheese, and some leftover chili. She was making sandwiches.
The process was as follows:
“What are you doing?” I asked. A dumb question, I know, but sometimes things just pop out of mouth when I’m astonished.
“Making lunch for the boys,” she replied, remaining steadily on task.
“Elinor, what are adding now?” my father asked. She was at the chili step.
She glared up at him. “I’m adding hamburger!” she fairly shouted. How dare he question her! “This is my hamburger and I want to add it!”
My father and I looked at each other and decided not to question this process any further. There were, after all, only four hot dog buns, so the sandwich factory was self-limiting. Just in case, however, I made sure other bread products were safely put away.
She sat down and ate two of her own sandwiches for lunch that day, but there were no other takers. My father made himself a bologna sandwich. He’s become quite self-sufficient in the kitchen.
My mother used to be a wonderful cook. I need to remind myself of that as I throw away the concoctions she now makes. However, the heat wave affecting many of us this week reminded me of my mother’s wonderful summertime dessert called Orange Ice Dessert. It is cool and refreshing. One of my brothers has a July birthday and this was what he usually had instead of a cake. Here is the recipe exactly how she had it written
Orange Ice Dessert
- 6 oranges (3 cups juice)
- 1 lemon (1/4 cup juice)
- 1 cup sugar
- 1/2 pint whipping cream
- 1/2 cup chopped pecans (or more if desired)
- 1/2 cup sugar
Mix orange juice, lemon juice and sugar well. Pour into a deep freezing pan (loaf type). Whip cream. Add sugar and pecans. Mix well. Spoon whipped cream mixture on top of juice mixture and freeze.
Additional comments: Wonderful make-ahead summer dessert — very refreshing.
My kids don’t like nuts, so we don’t put the nuts in. Or we make two pans, one with nuts and one without.
I may run out this morning and get some orange juice so I can make this. Then I can add a picture. And enjoy one of my favorite summertime treats.
Either that, or some hot dog buns and chili so I can try her other recipe. Or not.
Lest you think I am picking on my mother later in the post, let me start by listing for you just a few of the things on my desk right now that I can see with moving anything.
Yesterday, when I was at my parents’ house, I went in the laundry room to see if anything needed to be washed. The bin above the washer caught my eye. Usually, this was where cleaning rags were kept, but lately other things have been showing up there. The kitchen towels, which used to be kept in a drawer, are almost always in this bin these days. But yesterday, there was even more.
As I was taking all these things out and shaking my head over them, I thought about my desk at home. Any sane, normal person could start pulling things off my desk and saying, “Where did this come from? Why is this here?”
I think the difference is — and this is an important distinction for those of us who wonder if the same thing is happening to us — that this is a fairly new behavior for my mother. When I was in 3rd grade my desk was such a disaster that my teacher, Miss Bliss, dumped it out in the middle of class to my horror and embarrassment. It made an impression on me, but it didn’t fix the problem. My desk in college was cluttered, and my desks in my homes have been cluttered.
And the really weird thing is, I usually know where things are. I know right where to find a paper clip on my desk because I watched the box spill. I just haven’t picked them all up yet. I know there is a check I have to give Bud to sign. It’s in the pile to my left, either underneath or on top of the two library books that don’t have to be returned for two weeks.
My mother has always washed and saved zip-loc bags. That doesn’t worry me. It’s the fact that she no longer puts them in the same place. It’s this new disorganization that concerns me and reminds me that she is no longer in full possession of her faculties. If the person who owns that pretty little blue bowl ever shows up looking for it, I wouldn’t know where to start looking. In the workshop? In the bathroom?
My mother no longer understands where things go. It makes life hard for my father.
Maybe if I get Alzheimer’s, I’ll get neater. My desk will be organized. My husband and children will scratch their heads in wonder because it will look tidy. But I won’t know where anything is.
I really needed a Bible verse the other day when I was feeling very frazzled. One of the verses that came to mind was this:
She is clothed with strength and dignity;
she can laugh at the days to come.
So when I read the “Talk Back” question on Women of Faith’s site, asking, “If they made a movie of your life, would it be a comedy, tragedy or drama?” I immediately thought of this verse. This chapter of my life is definitely a comedy. It’s a tragic comedy, but, still, overwhelmingly, it’s a comedy. Really! If I couldn’t laugh at some of the ridiculous situations involved with someone with Alzheimer’s, I would end up crying. Constantly.
And when I cry, because I have a fair complexion, my skin gets very red and splotchy, and I look horrible. Most of the time, I don’t care a whole lot about how I look. I rarely wear make-up. My hair is what it is. My clothes are t-shirts or sweatshirts and blue jeans. But I really don’t want people to see me when I’ve been crying. So I try very hard to laugh at the days to come.
What funny thing will happen today? Already, my mother has put her cereal in her coffee and commented on the ridiculous prices in the sales flyer from Boscov’s.
“$6.99 for neckties! That’s ridiculous!” she said.
“How much would you pay for a necktie, Mom?” I asked. I’m never quite sure what decade or even century she is in at the moment, and I look for clues so that I can figure it out.
“I wouldn’t pay more than $3 or $4 for a necktie,” she answered.
What decade is that? I wondered.
She continued. “I wouldn’t go into one of those high class joints. Other ones look just fine.”
My mother always has liked a bargain. Some things never change.
The other half of the “Talk Back” question was “Who would you want to play you?” Most definitely Lucille Ball. I want someone who can stomp grapes and stuff candy in their mouth and wail. I feel like wailing and bawling Lucille Ball style quite often; I just show a little more restraint.
But wait — the other half of the verse says I must be clothed with strength and dignity. Life with my mother can be anything but dignified. She has forgotten basic proprieties in so many areas of her life — eating, bathing, dressing herself. I need to remind myself that I am the one who must be clothed with strength and dignity. It’s only when I am properly attired in these that I can help her. On frazzled days, when I miss my quiet time, I really see the truth in this. Strength and dignity are not things I have mastered, but, for the sake of the movie, let’s pretend I have.
Hmmm… an actress who represents strength and dignity. Audrey Hepburn immediately comes to my mind. I love her in Roman Holiday. She is beautiful, strong and dignified — except, of course, when she is smashing a guitar over somebody’s head. If you haven’t seen the movie, find it, watch it, and you’ll understand.
I’m sure with all our computer technology these days, someone can take Lucille Ball and morph her with Audrey Hepburn. You’d have it! The Proverbs 31:25 woman and the person I would like to play me in the movie of my life.
(This was originally published on Facebook on July 9, 2010)
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.
I want to cry.
I’ll have some orange marmalade instead.