Visits are getting more difficult

Our granddaughter didn't have school today so she and I went to visit Mom.

Mom's dementia is progressing quickly now and it's always a sad thing to watch.

I don't know if she still knows who we are. But she does know we are family. Whether I'm her sister, her daughter, a cousin, niece or aunt. . .  I don't think it makes a lot of difference. She is always happy to see us, wraps her arms around our necks, cries for a minute and then asks, "Are we going somewhere?"

Oh how she loves her rides.

But I fear the days of comprehension are long gone.

Today we found her in the activity room. They were making some sort of door ornament. Mom's room is filled with them. We walked back to her room and she asked again if we were going somewhere. I told her we would go out for coffee. She didn't hear me. I wrote it on her erasable note pad. I think she understood. I asked if she needed to use the bathroom before we left. She didn't get it. I opened the door to her bathroom. She had no idea what I wanted. Clearly the woman did not need to use the facilities, but she had no idea how to tell me she didn't.

She tries, on occasions to talk. To ask questions. Her voice has gotten softer and it is difficult to understand her. When you ask her what she said she thinks you are answering her and she can't hear or can't comprehend or both. So what few conversations we might have are just talking in circles.

We would have better luck quoting Shakespeare to one another. I have been tempted, on occasion, to reply to her questions with: Eye of newt and toe of frog, wool of bat and tongue of dog.

I never do. Just on the off chance she might actually hear me and then there truly would be no comprehension.

So we settle for quite outings with Mom going along for the ride.

Today we went to McDonald's for a change of pace from our standard visit to Russ'. Mom didn't make it through her cheeseburger when she started asking me where I was going to take her.

"I will take you back to your home, Mom."

A blank stare.

I wrote it out for her on a napkin: I will take you back to your home and walk you to your room.

Another blank stare.

When we arrived back at the nursing home, she didn't know where she was. No wonder telling her I would walk her back to her room meant nothing to her.

"Do I get out of the car now?"

"Yes, Mom. You can get out of the car now."

I walked her back to her room. We sat for a while. She wanted to go for a walk. We walked around the inside of the facility.

"Will you stay with me?"

I told her I would stay until lunch time (even though she had already had a cheeseburger, which she would never remember anyway). I told her when she went to the dining room to eat, I would leave. I told her I needed to go home to fix lunch for my husband. (King makes toast. Nothing else). I showed her a photo of King. It was one of the two of them standing together on the farm. King had been cutting wood and his shirt was drenched in sweat.

"He must work hard outside. He does a lot of work outside."

She remembered. The fact he is a retired school administrator would be lost on her. We will take the small victories.

And then she slips into her own personal, hellish fog again.

"Will you stay with me?"

I explained again I needed to get home.

"When will you be back?"

Telling her my next day off is Saturday means nothing. Telling her I will be back on Saturday means nothing. But I wrote it out anyway: I will be back on Saturday. Today is Monday. 

"But I don't know what day it is."

So this is the creator's divine plan? To watch my mother slip away into a fog where there is no escape? Am I supposed to learn patience? I raised four children and am now raising my granddaughter. I work at a job that requires infinite patience. For Heaven's sake I've been married 38 years. That should be patience practice enough.

If it's patience I need to learn, why do I have to learn patience at my Mother's expense?

The Block Party

My granddaughter asked me if she could have a boy-girl party at our house sometime this summer. She wants it outside with a bon fire. We can probably accommodate her, but I envision King hiding in the bushes the entire evening. As a school administrator he chaperoned more than his fair share of school dances and proms. It will be like old times for him.

I had the "opportunity" to chaperon one prom with him. I did not take my duties as seriously as he would have liked. I was stationed in the hallway leading to the bathroom. Every now and then King would stop by and ask if I had seen kids heading down the hall.

"Yeah. Four or five girls went down the hall about five minutes ago."

"You didn't stop them?"

"No. You just said to watch the hall. I didn't know I was supposed to prevent them from going to the bathroom."

I was never invited back.

That particular prom was held at the Holiday Inn in a neighboring town. Most of what I remember about it was King and one of the other administrators hauling two young couples from the dining room of the hotel. Apparently if students did not eat the dinner provided by the prom committee they could not attend prom. Problem was, the kids were not students at King's high school.

Score one for the over-zealous.

I also remember the drama and teen angst. The breakups. The tears. Seems to be a part of the territory that goes with prom night. Ahhh youth.

Over the years my parents played host to quite a few teen parties. Since dancing was not allowed at our public high school (dancing was a sin according to our school board -- I'm not sure why), Mom and Dad hosted -- and chaperoned -- many after prom parties for my older sisters. The parties could probably be considered the forerunner to  the all-night affairs that many schools sponsor now, but these ended at midnight.

And although I'm sure they took their responsibilities seriously, Dad loved dancing with all the girls.

By the time I was old enough to attend prom, my friends and I opted for more quite, sedate affairs at someone's home. Times changed.

But we learn by example, and my sisters and I were always inviting people over to go swimming, or celebrate the New Year, or cool off after band practice.

My younger sister hosted a block party at our house one summer. I believe she asked Mom if she could invite some friends over to go swimming. Mom said of course, so she and our neighbor proceeded to walk around our block and invited every family in the neighborhood to attend.

If I recall correctly, Mom took it all in stride. She hadn't said no. She just hadn't planned on an entire block to be invited. Our neighbor's father however, ever the vile tempered gentleman that he was, made his daughter go door to door and un-invite everyone. So while neighbors were calling Mom to see if there was, indeed, going to be a party, our neighbor was going door-to-door calling the whole thing off. Small towns.

Somehow we did manage to pull it off and we did have the party. Kids came, they swam and played games. Mom served homemade cookies and punch. There was probably coffee for the adults. Our neighbor's father did not allow her to attend.

In the end, the party was a great success. I would imagine it made it into the local newspaper:

"The Stehower's hosted a block party last week. Neighbors from the area were invited and Mrs. Stehower served cookies, punch and coffee. A good time was had by all."

So I will let our granddaughter have her party. I guess it's our turn. I hope a good time will be had by all.

We want to get physical

Today (Saturday) was the first time in two weeks my granddaughter and I were able to make the drive to Holland to visit Mom. The weather has either been too stormy or we have been stuck in melted slush in our driveway.

Our Saturday visits have become a tradition. I have probably mentioned several times before (is repeating myself a sign of dementia?): We meet my sisters at the nursing home and take Mom to Russ' for coffee. Today it was just my older sister, my granddaughter, Mom and myself.

As usual, Mom made it about an hour and then she started looking at her watch.

We knew what she wanted, but it we were having a good time just visiting.

"What a pretty watch Mom. Is that new?"

I know. We are horrible.

We didn't make Mom wait that long and drove her back to the nursing home and escorted her back to her room. Not ready to say goodbye to Mom -- or to one another -- we were sitting in Mom's room chatting some more.

Mom turned to my sister, "Are you going to live with me?"

My sister indicated, no. She was not going to live with Mom.

Mom never asked me. Does she know I have family obligations or am I simply that stranger sitting in the chair (or in this case on her bed).

She still cries when we leave and we have started to look for ways to distract her (like taking he to the dinning room for lunch). Today my sister stayed with her to put  together a puzzle while I tried to slip out. I rounded the corner and looked back. Mom was waving at me. These are the days when I wonder if she could still be living with us. If I would have the patience to continue to take care of her.

Life being what it is, I waved back and walked out to the car.

My granddaughter and I drove through Saugatuck on the way home. As we turned off Blue Star Highway we met at least seven joggers along the road. Really? People jogging in weather that hasn't reached 20 degrees in almost five days? To each his or her own.

Mom and Dad once took up jogging. It was sometime during the 1960s. I believe my cousin told them about she and her husband jogging together for exercise and Mom and Dad decided if Betty could do it, they could as well.

This was in the days before special jogging shoes. Before special clothing designed for joggers. Before the days of stretching and warming up. Once simply got ready, went outside and ran.

I remember it clearly. They waited until dark. Both of them came out of the bedroom in sweat pants and hooded sweatshirts. I had never seen either one of them in anything but twill or gaberdine before that evening. Both were wearing Keds.  Or maybe they were PF Flyers. The cheap kind. The ones that back then cost less than $5 and Mom probably purchased at the Hamilton Variety Store.

They carried flashlights and jogged to the neighbors down the road and back. Dad had clocked it a couple of days before. It was a mile.

I think they jogged off and on for several weeks until my cousin's husband had a heart attack in their driveway after a jog (he lived). It kind of lost its appeal after that. Mom went back to doing leg lifts in the living room and Dad went back to smoking cigarettes.

What I want to remember

With the rash of snowstorms we've been having over the past 10 days, I haven't ventured north to visit Mom very often. So when this morning dawned bright and clear, I took advantage of the weather and drove to Holland for a visit.

Mom is always extremely happy to see me (any one of us, for that matter). She was sitting at the breakfast table and after our hello hugs were complete the first words out of her mouth were: What are we going to do? Translated that means: Where are we going?

I took her back to her room and we sat there for a few minutes. I tried to have a conversation with her. Ok, hope springs eternal. I knew it was fruitless, but on the off chance she might be having a good day and be able to converse I had to try. It took six attempts at "How are you?" and I finally gave up.

So I decided to just blather on about the first thing that came to my mind . . . Thirty-six years of martial bliss does not come without its struggles and King and I had just called a temporary truce. I was still smarting from our latest battle. So I told Mom all about it. All the injustices. All the hurts. All the frustrations. Everything. I held nothing back. When I finished I looked at her, knowing she hadn't heard a word I said.

Or, perhaps she had and didn't know what to say because her only reply was, "Is that your coat? Can we take it somewhere?"

So we went out for coffee and a pig-in-the-blanket. I know she is not supposed to eat anything that isn't pureed, but come on, let the old gal have some fun. I cut her portion into tiny pieces and then watched every mouthful she ate. I even helped her douse it with ketchup.

Dining out is always an adventure. So many things we take for granted have to be carefully considered when dealing with someone who has dementia.. It's the little things that can cause great consternation. When a waitress comes around to your table with a coffee pot in hand, even if you can't hear what she is saying, after 91 years of dining out (more or less) one ought to be able to figure out she is asking if you want more coffee. Except it doesn't work that way with someone with dementia. They haven't a clue. You may as well be asking, "How many aliens does it take to scrape peanut butter off the sidewalk in front of a purple house?"

And so it goes. But we were together and I think that is all that matters.

Mom doesn't last more than an hour on an outing and then she begins to worry about getting home. The questions begin, "Will you take me to a new house? Are you just going to drop me off? I think they are missing me."

So I brought her back to the nursing home in time for her to join in some sort of activity that involves passing a balloon around. I used to think those types of activities were demeaning, but knowing how limited Mom's capabilities are, I understand better now.

We said our goodbyes. I assured her my sister would be back to visit her in the afternoon. (Why I took time to explain all this I don't know because she could not hear me. But I think the smile, the pat on the arm and the kiss goodbye helped). I walked out without looking back until I got out of sight. Then I turned to peek around a corner. Mom was sitting in a chair in a circle with a blank look on her face.

Try as I might, that picture is etched into my memory and I can't see anything else. It is not how I want to remember my mother. I tried calling up other memories. . . Mom at a podium giving a book review. Mom announcing the winners at a 4H style review. Mom serving tea at the conservative party ladies' tea. They are there. Kind of foggy, like an old photograph. But they are there.

It's something I will have to work on for a while.