What is one of the scariest situations you have been in because of dementia?
Let’s face it — dementia can be a scary thing, for everyone involved. Every time I see another news story about someone with dementia wandering off, my stomach tightens. There, but for the grace of God, goes my mother.
My father recently told me a scary story. Years ago, my parents traveled with a church group to Macedonia, to walk where Paul walked. They had booked the trip during the days of denial, but there was no denying my mother’s dementia when it came time to leave. I was worried sick.
That’s probably why my father didn’t tell me this story when they first got home from the trip. Back then, he told me how the other ladies on the trip all helped with Mom. “They were great,” he said. “They really looked out for her.”
He saved this story to tell me years later.
In his words, “When we were in Greece, I needed to go find an ATM to get some more cash, so I told Mom to stay in our hotel room. I explained that I needed to go out, but that I would be back. She said she understood, but when I got back, she was gone.”
She had, indeed, left the hotel room alone. In a foreign country. Wandering off. Fortunately, some people from the tour saw her and kept her safe until my father came back. It could have been quite disastrous. There, but for the grace of God…
My own personal scary situation with my mother took place at JFK.
I’m still not sure of the reasoning behind taking my parents to JFK as opposed to an upstate airport. Maybe, what with my blurry memory and all, it was for that same international trip, and the trip originated from JFK. I think, though, that it was a trip to Florida. We thought a direct flight to Florida would be so much easier than trying to make connections.
Whatever the reason, there we were at JFK — me and my parents. I pulled right up to the door, dropped them off, parked in the short-term parking, and ran over to the terminal to make sure everything went okay.
By the time I got there, they were already well-entrenched in the snaking line leading to the security checkpoint. I stood and watched as they inched forward. My father turned and waved at me. He got my mother to do the same.
Slowly, slowly, they worked their way to the stacks of trays, the conveyor belts, and the scanner.
I watched my parents each take off their shoes and put them in their respective trays. A TSA agent told my mother to remove her jacket, which she did, and that went into the tray too.
My father, moving much more slowly than my mother, was still untying his shoes.
My mother spryly moved her way through the line, putting more and more distance between herself and my father. I stood, helplessly, at a rope barrier watching.
A security guard stood near me. “Excuse me,” I said to him. “My mother has Alzheimer’s and she is getting separated from my father at the checkpoint.”
He glanced in the direction I pointed, shrugged, and said, “I can’t really do anything about that.”
Even as I spoke with him, I could see my mother pass through the checkpoint and grab her jacket and shoes. My father was still by the trays.
“I really need to get in there to help her,” I told the guard.
He shrugged again, unmoved. “I can’t do anything,” he repeated.
My mother had her shoes on as my father was walking through the metal detector. She was heading out of my sight down a corridor. “Please, sir,” I begged the guard.
“Next time ask for a pass to accompany them through the gate,” he said, but he refused to make eye contact with me. He stared resolutely ahead. I felt like I was talking to a wall.
My father made it through the checkpoint and I could see him sitting to put his shoes on. My mother was nowhere in sight. There was, quite literally, nothing I could do.
I watched him finish tying his shoes and slowly move down the same corridor where my mother had disappeared. I felt like I had swallowed a boulder. The security guard, impassive, had moved away from me and was talking with someone else.
My final hope was to call my father on his cell phone. Of course, he didn’t have it turned on.
I dejectedly turned to leave, but made one last appeal at a help desk. The woman was so nice, but, of course, couldn’t help me. She offered me the same advice as the guard — get a gate pass, but it had to be done with the ticketed passenger with me; I couldn’t do it after the fact.
Of course, when I left JFK that day, I got lost in Manhattan and cried.
My father and my mother found each other in the airport. It all turned out okay in the end.
Still. Scary is an understatement for those events.
Because of situations like this, few things have built my faith more than Alzheimer’s. The rope barrier at JFK might as well have been the gulf between Lazarus and the rich man. (see Luke 16:19-31) With no way to cross it, only helpless feelings welled up inside as I stood and watched.
Prayer is my main refuge.
I am not in the hell of the rich man, though some describe care-giving in such negative terms. No, I am stuck at a rope barrier, talking not to Abraham, or an impassive security guard, but to God Himself.
I’m watching my mother as she is carried into Abraham’s bosom.
It is a slow, sometimes scary, good-bye.
What was the first indication you had that something was not right? Was it a peculiar behavior or a specific incident?
My mother always knew six ways to anywhere. And the rest stops along the way. And the quality of the bathrooms at the rest areas.
This was in the days before GPS. We used old-fashioned paper accordion-folded maps. Not that my mother needed them. It was all in her head. For longer trips, she would order AAA TripTiks, but I think were more for us than for her. We could learn the names of the roads and where the rest stops were by using them. Her mind, however, was a veritable road atlas.
That’s why when she got lost, it stuck out.
Of course there had been little signs, little things she forgot or repeated. When I do that now, I’m just sure that it’s the first sign of Alzheimer’s. I think we all have those fears.
But my mother getting lost? That was almost unheard of.
We were in Myrtle Beach — my mom and dad, my sister and her husband, and my family. We were all in Myrtle Beach at the time-share condo that my father had
been snookered into purchased.
The area was very familiar because we had been going to the same place for a number of years. Mom decided to make a quick trip to the Post Office to mail out the postcards she had written. Helen, probably 10 or 11 at the time, went along for the ride.
I should add here, that if any of my children have inherited my mother’s internal atlas, it’s Helen. Even at that age, she knew her way around and remembered roads better than I ever will.
So off they went to the Post Office while we hung around the pool.
They were gone for a very long time.
You know how it is. At first, no one thinks anything of it. Oh,they’re gone to the Post Office.
Then, someone asks where they are. They went to the Post Office a while ago.
A little later, someone asks when exactly did they leave for the Post Office.
You start wondering, how long have they been gone?
Then the misgivings begin, and a thousand scenarios, most of them bad, start playing in your mind.
It was well over an hour, maybe a lot longer, before the car pulled back into the parking lot. Helen’s eyes were big. She pulled us aside and she said, “Grammie got lost.”
The Post Office, only about a mile away, was elusive for my mother that day. It was so unheard of.
My sister and I whispered about it. Something wasn’t right. All the other little things suddenly took on new significance. Maybe there was something more going on.
As it turns out, that something more was Alzheimer’s.
Communion is a joyful time at our church.
For so many years, I was used to a different way of celebrating communion. A somber, sober way. A stay-in-your-seat kind of way. A contemplative, inward-looking way.
Not that those are bad things. Communion — eating the bread and drinking the cup — shows forth the Lord’s death until He comes again. Death is a somber, sober thing. It calls for contemplation and looking inward.
At our church though, we walk to the front and receive the bread, a chunk torn from a small white loaf, with the words, “This is the Bread of Life.” Next, we dip our bread into the challis and hear “This is the Cup of Blessing.” The bread, now soggy with grape juice, must be eaten immediately, unless it is so large that it takes several bites. Children love this.
At first, I was critical of this method. I mean, really, everyone knows Jesus didn’t use leavened bread, I would scoff to myself. But the reality is that Jesus also didn’t serve wine in cute little cups that could be used later for VBS crafts. No, modern communion only recalls that Last Supper; it doesn’t replicate it. And that attention to the outward details is exactly the pit into which the Pharisees fell. What’s important is what’s going on in the heart. More precisely, for me, in my heart.
Once I set my inward Pharisee aside, I could laugh and enjoy communion. It’s a little chaotic. Children grin broadly and sometimes laugh when they are handed a large piece of bread. More than once bread has fallen into the challis. One parishioner’s guiding eye dog, not always in harness, but still in church, sniffs the floor hopefully for a few crumbs.
Yesterday, I went forward for communion. The pastor said, “This the Bread of Life,” and tore a piece from the loaf. I looked up into eyes that were warm and tender. This was someone who knows me and loves me. The young acolyte lifted the challis for me. His little voice was timid and sweet as he said, “The Cup of Blessing.”
Afterwards, as I sat in my seat, I thought about that last supper Jesus shared with His disciples. I’m sure He looked them in the eye and smiled at them as He gave them the bread. Maybe it was a little messy sharing the cup. I know for certain, though, that the love was palpable.
It reminded me of something Frederick Buechner once wrote about a communion experience. I’ll leave you with that.
… I was receiving communion in an Episcopal church early one morning. The priest was an acquaintance of mine, and I could hear him moving along the rail from person to person as I knelt there waiting for my turn. The body of Christ, he said, the bread of heaven. The body of Christ, the bread of heaven. When he got to me he put in another word. The word was my name, “The body of Christ, Freddy, the bread of heaven.”
…There was nothing extraordinary about the priest knowing my name — I knew he knew it — and there was nothing extraordinary about him using it in the service because he evidently did that sort of thing quite often. But the effect on me was extraordinary.
… For the first time in my life, maybe, it struck me that when Jesus picked up the bread at his last meal and said, “This is my body which is for you,” he was doing it not just in a ritual way for humankind in general, but in an unthinkably personal way for every particular man or woman or child who ever existed or someday would exist. Most unthinkable of all, maybe he was doing it for me. At that holiest of feasts we are known not just by our official name but by the names people use who have known us the longest and most intimately.
from Spiritual Quests: The Art and Craft of Religious Writing,
edited by William Zinsser
Food for thought the next time you partake in communion.
Last night (and the night before) Laurel said to me as she went to bed, “I’m sorry if I come in.” Sometimes she wakes up in the middle of the night with a bad dream and comes in our room.
“It’s okay,” I told her. “It’s in my job description.”
I probably should have looked the job description over a little more carefully before I signed on. Not that I ever really looked over any job description; I was usually just glad to have a job.
Like when I worked at the Baseball Hall of Fame, I think my job title was “Souvenir Girl” and that pretty much summed it up. I sold souvenirs and tickets. Maybe it specified that I wasn’t supposed to try to charge VIPs, like the time I was going to charge Bowie Kuhn admission, but I honestly never read through it.
But a Mom Job Description — whew! There’s a good one that I’ve seen: The Mom Job Description. (Click to see it.)
I actually think I could do it in five words.
and other duties as assigned
No matter how complete the list, it would still be incredibly incomplete.
I knew I would have sleepless nights. I imagined they would end when my children slept through the night. Not so. It’s not always Laurel waking me up. Sometimes I wake with a particular child on my mind and just pray for them.
Prayer is definitely somewhere in the job description. Under communication — with doctors, teachers, waitresses, and God. Yep.
No one told me that when I became a mom, I would have to cut hair. But I have cut the boys’ hair for years. All my boys are now teenagers and beyond. I tell them to get their haircut by somebody who knows what they’re doing. And yet, what did I do the other day? Cut Jacob’s hair. And I still don’t know what I’m doing.
I knew when I became a mom that I would have to prepare meals. I was okay with that because I know how to read recipes. My creativity in the kitchen is pretty limited. But did I ever imagine that I would have to triple or quadruple every recipe every written? And kids think math skills aren’t that important…
And all those years of raising children are really just a warm-up for caring for parents, a job I’m now cowering from. Other duties as assigned.
It doesn’t seem to get any easier.
And I just seem to get tireder.
But Laurel can still wake me up any night of the week.
It’s in my job description.
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.