Going Going Gone

Ok, here’s a fun fact about middle stages of Alzheimer’s that nobody tells you about…loss of bladder control. Up until a couple of years ago I could count on one hand the number of times I’d seen my mom pee her pants. Exactly three.

Two times were accordion related. As a kid my mom had taken accordion lessons. (Once I asked her why she took accordion lessons. She told me it was because they were too poor for a piano.) My mom’s accordion lived in the furnace room of our basement. Twice I’d seen my mom so drunk that we convinced her to get out the accordion and play one of two songs she claimed to still remember how to play…”Ode to Joy.” Both times she got about half way through and we would all be on the floor laughing so hard, and she’d be laughing while she tried to play and sing, and peeing in her pants.

The third time was when we buried our cat Sniffles. He had died after getting in an attack with another cat. The neighbors who had found him put him in a cardboard box and brought him to our house to bury. My mom was with me while I dug a hole in the side yard. Sniffles had been a cat we shared with the next door neighbors so mom decided he should be buried in the side yard between the two houses.

It was cold and drizzling and there was the start of thunder and lightening. We looked like grave robbers in a horror movie. When the hole was dug, I opened the box and attempted to pour Sniffles in. But the blood had caused him to stick to the side of the box and he swung out and dangled frozen and lifeless from the box. My mom and I both let out huge terror-ridden screams, then completely cracked up about how scared we were. We laughed so hard she peed her pants, and left me to finish the job.

Those were little accidents. Now my mom rarely makes it to the bathroom ahead of going in her pants. She wears a diaper full time now. And I have to say that I hate changing her diaper. I hate it. There is a lot of this illness that you learn to embrace. Nobody wants to embrace a dirty diaper.

And just like anything with this disease, there are degrees. Things that start strange and shocking become routine and normal. This came on slowly. It started as accidents that happened when we stayed out too long between bathroom stops. Or as accidents that happened when she got stressed or anxious. I will never forget a trip to see a psychiatrist for the first time. Mom was anxious and really didn’t want to go. I got lost and as we walked up and down the block trying to find the office, I got more and more agitated. When I finally found the office door, I turned around and there was mom, standing on the sidewalk peeing in her pants. We had to cancel the appointment and go back the following month when they could fit us in again.

There are strategies in place now to try to make this manageable and as close to normal as possible. Mom always wears a diaper. There is a pee pad on her bed. Joey and I both have pee pads for our cars. We go to places that have private restrooms so we can go in with mom and help her out. And our day bags when we go out shopping or driving always include an extra diaper and change of clothes.

We make the best of it. But it never becomes something fun.

And sometimes when I get to feeling sorry for myself…how awful is it that I have to change this diaper… I remind myself that it isn’t a picnic for my mom either. This is not the way she would choose to have things if she had any control over the situation. And I’m sure changing my diaper wasn’t her favorite part of my being a baby. I’m sure it was the funny sounds and the smiles and the cute things I did that were the fun times. But, still, the diapers were always there, and they went hand in hand with having a baby. They still are. And we deal with it, and we get through it, so we can get back to the fun stuff.

I AM Smiling Matt

This is one of my favorite faces my mom makes.  When you tell her to smile for a picture, she does, for like a half a second.  Then you snap the picture and you miss the smile.  So you have to do it again.  “Smile mom.”  She does it, but by the time you take the picture, back to neutral face.  So this goes on about 5 or 6 times until she finally says, “I AM smiling Matt,” and makes this face.  The best.

Chatty Kathy

Growing up, we were a house divided…2 introverts and 2 extraverts.  My brother and my father are clear introverts.  They need their “me time.”  My dad would wake up before anyone in the house, go downstairs, make coffee and read the paper.  He’d let the dog out.  He’d carry fire wood.  He’d organize a list of chores to accomplish for the day.  He’d plan dinner.  All in quiet.  All in his head.  All by himself.  And when my dad woke us up on weekend mornings for soccer games or to cut the grass, he’d already had two hours of think time and planning time, and he was energized.  

My brother is funny and animated.  He is the life of the party when he’s telling stories.  He can be serious and thoughtful when you have a problem.  He’s calm and organized in a crisis.  But he can’t be any of those things when he doesn’t have his “me time.”  The eternal joke in our house was that my brother was always cleaning his room.  Ask my dad about it to this day and he’ll tell you, “When I’d ask the boys to clean their rooms, Matt would be done in 30 minutes so he could go off and do something else.  Joey would spend 6 hours in there and it wouldn’t look any different.”  For my brother, cleaning his room was time he could close the door, be alone and recharge.  The room was always a cluttered mess.  And I suppose that’s exactly why he kept it that way.  It was the perfect excuse to escape and be alone whenever he needed to be. 

My mom and I are different.  We need people and noise and energy around us.  Too much “me time” can be like a prison sentence.  I remember my mom’s constant questions from the bottom of the stairs to my brother and me on the second floor, “What are you doing up there?” or as we’d come in and out of the front door, “Where are you going?” or, “Where have you been?”  To a teenager it was a constant barrage of prying questions into my unexciting life that I nonetheless wanted to keep private.  To my mom, it was trying to interact and talk and energize.

My dad has a plan.  When he opens his mouth to tell you how you should do something, he’s thought it through.  Not my mom.  It was constant stream of thought.  Thinking out loud.  Figuring it out as she went. 

And my mom the extravert, would take an hour to wash the dishes and clean the kitchen, while we sat at the kitchen table and did our homework.  She’d ask us questions, give us help, or just talk to us.  She’d make microwave popcorn, pour it into a big bowl, and we’d play cards or make each other laugh at the kitchen table.  My brother would tell stories.  My mom would ask us about school and our friends.  

When no one was there to talk to, she called relatives or neighbors and she could talk on the phone for an hour, easily.  She’d walk outside at night to let the dog out and spend 45 minutes chatting with people passing by on the street.  All the while, my dad was quietly watching tv, and my brother probably cleaning his room.

My mom was always chatty.  And though at times it drove me crazy, looking back on it, I understand it.  One of the biggest changes over the last year, is that my mom really doesn’t talk anymore.  Sometimes it’s because she forgets the words for things.  But it’s more than that.  She doesn’t initiate a conversation.  She doesn’t ask about your day.  She doesn’t tell you about her day.  There’s no problem in her life to talk through.  No big story to hear for the hundredth time.  It’s just hellos and good-byes, sometimes a please and a thank you, sometimes an I love you, and lots and lots of parroting back of what other people are saying to her.

I will always love my introverted dad and my introverted brother.  They’ve taught me so much about how to love and respect someone with different needs.  How to give other people “me time” when they need it.  

And, I really miss my extroverted mom, the annoyingly talkative mom.  And thank goodness for growing up in a house divided…because it taught my mom and me how to sit in a room and be quiet together when that’s all you can do.