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.

We have a neurologist and a psychiatrist that I really like. It hasn’t always been the case. Over the past several years the quality of care has been variable to say the least. One big part of that was access. When we moved my mom into a home, the one we could find that would take her was in a small town without a psychiatrist or a neurologist. We would have to travel an hour or two to find someone. Then we were limited in our options. And when we would finally find someone we liked, they would retire, or move out of state, or be too busy to get another appointment anytime soon. It was a continual exercise in frustration. Not to mention it was 3 1/2 hours one way just to get to my mom. Add on the time spent after that to get to a doctor and it was a seemingly never-ending day. I don’t even like to remember how many days I logged 7 to 10 hours of driving in one day just to see her and get her to appointments.

When we moved mom in August to a nursing home that is 1 1/2 hours away, we also increased exponentially our choices for medical care. Not only are there specialists within a 30 minute drive, there are choices for specialists. And so far, the two we have chosen have proven to be patient, kind, knowledgable, and helpful to both mom and me. They take the time to answer questions. They tell me what I should be looking for. I didn’t realize how much I was missing out on by just trying to “get by” with whomever we could see.

So we are adjusting mom’s psych meds this week. The psychiatrist, like me, wants her to be on only what is necessary. So we are experimenting and taking her off one med and hoping she does just fine. Fingers crossed…

I had this idea one day last fall when I was driving home from a mom visit…to take all the old pics we had in photo albums and Ziplock bags and photo boxes and have them scanned. Then I could make photo albums on my iPad and take it with me when I visit mom. We could flip through the pictures, hopefully helping mom to remember and relive some of the good memories we’d captured on film. With her vocabulary shrinking, and her saying less of her own thoughts and more parroted thoughts, it’s hard to know what she remembers. Maybe this will help me.

I asked my friend and amazing photographer Kim Baker, click here to see here work, where I should go. She reached out to her network of photographer friends and came back with the recommendation to go local. There are horror stories of the mail order places that you send your photos to who in turn ship them overseas to scan. That notwithstanding, I’m also a big fan of supporting local businesses when I can. So I went to Ritz Camera in downtown Bethesda with two shoeboxes full of about 2000 photos to be scanned. They were great and in a week’s turnaround I got two DVDs with all my photos digitized.

So now I’m working on the iPad photo albums and I have plenty of great new images to go along with the stories yet to tell on here…

I think I just needed a few weeks to feel like I could get life together, through the madness of the holidays and the new year. Then after the new year came I felt overwhelmed because I wanted to edit videos and pictures and I felt I needed to post things in chronological order. Is that the stupidest reason not to write something? Just because it might be out of sequence. I know the readers on of this blog and they will be fine with a Christmas story in February.

So for our first real post of the new year, I arrived at the home on Monday and mom was zonked out. She did not want to get out of bed. She had her lunch and was settled in for an afternoon nap. I felt guilty coercing her with the promise of getting her hair brush and choosing an outfit. But it worked and we got up, got moving, and had a great hour of riding around in the car. We even stopped for a thrilling excursion to the Dollar General where I bought…wait for it…a new tire pressure gauge. Do mom and I live on the edge or what.

So here is a tune from the end of our drive. Unfortunately the end of video cuts off before you get this exchange:

Me: “Did you like that song, mom?”
Mom: “Yes.”
Me: “Me too. It’s one of my favorites.”
Mom: “I peed in my pants.”
Me: “Oh is that how much you liked it?”
Mom: “No, I just peed in my pants.”

Thank goodness for Oldies radio and pee pads for your car seats. Here’s to a good year…

Text messages:

Matt: How was mom when you saw her today?

Joey: She was fine. We watched tv for a while, then walked around for a while, then did a couple puzzles.

Matt: Did the nurse say she’s been ok?

Joey: Said she’s been fine. Awake during the day, and she’s now really bossy.

Matt: So back to her old self?

Joey: Not as manic or as active. Not as bad.

Matt: That’s good!