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.

Two friends…

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.

Jimmy Hendrix T-shirt, bell bottom jeans and tons of attitude. Some things never change.

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.  

I had never had a full beard before.  I decided to grow it out in the fall just to see how it would look.  For those of you who have been wondering what my mom thinks of my beard, here’s a clip from the fall I’d forgotten to post.  It also features one of my mom’s favorite sayings when I was growing up… “Because I said so!”

We had a black and white cat named Sniffles. We didn’t name it Sniffles. The neighbors did. He was abandoned at the pre-school where my mom worked, and she brought him home. The neighbor’s wanted him, so shortly after we adopted Sniffles at our house, he moved next door and was adopted by the neighbors, and named Sniffles. Then when the neighbor’s moved several years later, Sniffles was re-adopted by us. This cat was destined to be maladjusted.

My mom once asked my brother, who was in high school at the time, to take Sniffles to the vet. My brother, being in the difficult teen stage of not wanting to do anything other than exactly what he wanted to do, decided to enact some revenge for mom having asked him to run the simple errand.

It turns out in fact that Sniffles had some sort of infection and needed an antibiotic. The vet phoned the prescription in at our local Rite Aid. This Rite Aid was and had been used for all of our prescription needs for 20 years. We also used it as our convenience store, stopping in on the way home to pick up toilet paper or toothpaste or a Birthday card we’d forgotten all about. It’s safe to say that we were in Rite Aid several times per week. My family was so entrenched in the inner workings of Rite Aid that my mom could name everyone who worked there and give you the latest office politics.

My mom stopped in to Rite Aid to pick up Sniffles prescription. She went up to the pharmacy window and in an exchange I can only imagine involved lots of “how have you beens” and chat about the weather and the changes in the neighborhood, my mom asked for the prescription for Sniffles DeMarco. The pharmacist rustled through the prescription bags but couldn’t find anything.

He looked again. “I don’t have anything for a Sniffles DeMarco, but I do have a prescription for a Nipples DeMarco.” My mom knew instantly what had happened. While at the vet with Sniffles, my brother “officially” changed the cat’s name. In an act of sheer fortitude, my mom acknowledged the prescription as hers, and rushed out of the Rite Aid.

Our front door opened with such anger and with a such a bang, it sounded like she had kicked the door in. My mom’s voice echoed through the entire house, “Who…the f*$@…changed the cat’s name…to Nipples?” If she was concerned about that name being announced across the Rite Aid, she had become comfortable enough with the thought of it to scream it through the neighborhood.

My brother, fearing the wrath, did what anyone would have done, he blamed his brother. “Matt did it,” he said. This had the opposite effect because it only made her madder, “He’s in college. He doesn’t even live here anymore!!!”

And like she was left to do so many times in the course of raising two boys, she walked upstairs to her room, shut the door, cooled down, and went on in spite of what we put her through.

Mom has been working with Vanessa, a respiratory therapist, to help her to learn to eat slower, drink slower, and avoid choking. Now the true irony of this is that up until the last couple of years, the opposite has been true…my mom took FOREVER to eat. She would eat so slow that the rest of us would be finished with our seconds before my mom ever made it through a first helping. I always swore it was her mechanism for getting us to stay at the dinner table longer and talk. (I’m still not convinced that wasn’t the case.)

Now she likes to down the drinks as fast as possible and she eats as if someone might take anything left on her plate three minutes after it’s set in front of her. As a result she ends up taking in too much at a time, or swallowing air and coughing while she eats. While the Vanessa has been working with mom the last two weeks, she’s been on pureed food and thickened liquids. I’m not posting a picture of it. Your imagination is accurate. YUCK! But they are about to upgrade her diet because we think we’ve found a workable solution…a device I’ve dubbed the milkshake cup.

Here’s how it works…a special yellow tip at the bottom of the straw prevents the liquid from coming in too quickly, much like a thick milkshake. And the extra long straw means it takes more effort to get the liquid up. So by restricting the amount of liquid that she takes in one sip, she limits the number of times it “goes down the wrong pipe.”

And the milkshake cup has a tight fitting snap lid and a hole that the straw can’t fit through because of the milkshake tip. This is key because with an earlier experimental cup, mom got annoyed with the restricted flow, pulled the straw out and poured the liquid through the straw hole in the lid and into another glass that she could down in seconds. As Vanessa says, “Your mom is a very smart woman.”

But so far so good with the milkshake cup. We used it for coffee and fig newtons and it worked like a charm. Here’s hoping she takes to it.

Well before the Alzheimer’s diagnosis, my mom began a gradual psychological decline. About 8 years ago, when it was finally to the point that her life was beginning to unravel, my brother and I knew we needed to do something and we knew we needed some help. We were struggling to diagnose and name what was going on with mom. We weren’t sure if it was bipolar disorder or delusional disorder or some combination of both.

A psychologist, who was a friend of my family and had known my mom for many years, helped my brother and I when we needed it the most. When we were scared and confused and in denial, he spoke to us about the uncertainty that was, and the chaos that was likely to be ahead, and he did so in very blunt and honest terms. I remember him saying, “Your mom is on the path to being one of the mentally ill people you see on the street.”

Bam…brick wall. I have remembered him saying that as if it’s an audio tape playing back in my head for almost a decade. It changed things for me. It changed the way I thought about my responsibility for creating structure and support. I knew my brother and I needed to prevent that from happening, and at the time I didn’t know how. That part has been unfolding ever since. But the goal was to prevent my mom from living into that potential reality.

He also gave me some of the best advice. He said begin to put away some money for emergencies and create a plan for what you will do down the road. I understand now that it was that advice that helped to shift my focus from trying to fix what was wrong with my mom, to trying to create a support structure around her to manage what was wrong with my mom. It was the beginning of my paradigm shift that helped me understand that there was something more I could do than just be angry about how unfair this all was.

I don’t even realize it till I stop and think about it, but when my brother and I talk now, we talk about the plan mostly, and not the disease. And I’m very lucky that I have a great sister-in-law who also has joined our team. We have internalized that we don’t have control over the disease. We have control over the support we give and the coordinated care we try to establish and provide. And at the end of the day, I take a deep breath and hope that the plans will work when we need them to.

And this week they did. My sister-in-law stepped in to take my mom to her follow up neurology appointment. One of the speech therapists at the nursing home has been monitoring my mom’s eating because she eats and drinks really quickly at meals and is getting choked. They have modified her diet and given her a new cup with a lid and straw that forces her to take smaller, slower drinks.

Since mom has been taken off one of the psych meds, she has been increasingly more difficult to redirect and on Wednesday she was so loud and disruptive she was making everyone really agitated in the dining room. The nursing home tried to get me on the phone but I was teaching. My brother stepped in and took the calls. The nursing home called the psychiatrist and got her in for an appointment that day. Since my brother and I were both two hours away at work, they took her to the appointment. The psychologist decided the grand experiment to see if she could go off the medicine was over, and she’s back on it.

A busy week. A stressful week. But one where we had a plan. And the plan worked.