It Happened to Me: I'm Living With My Mother’s Early-Onset Alzheimer’s

It started small. Forgetting words, getting turned around when driving, repeating stories. Initially, it seemed like stress -- and my mom was very good at playing it off.

Jan 24, 2013 at 2:27pm | Leave a comment

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My mom's illness has become this weird badge of honor every time I go to a doctor's appointment.

“Family history?”

“Heart disease, diabetes, Alzheimer’s.”

“Alzheimer’s -- in your grandparents?”

“In one, yes. And also my mother.”

“Your mom?” they always say, looking at me and then back at my chart, clearly trying to do a quick calculation of my age while proceeding with their questioning. “How old was she at diagnosis?”

“54.”

This is usually when the doctors break their usual all-business protocol and begin to coo sympathetically. They don't dwell too long, usually asking a question or two before shaking their head and ​tsking ​to themselves. There’s something strangely satisfying and sad about telling a trained medical professional something that elicits that reaction.

My mom got diagnosed just a few months after my 22nd birthday. I was living in Texas at the time, about 4 months out of college. I remember taking my dad’s call in the break room at work, sitting at the table in our kitchen/locker room. I remember him explaining how they were beginning to think it was a brain tumor (this had been after numerous other quick-fire diagnoses: menopause, depression, anxiety).

I felt so far away when my dad was explaining all this -- far away from where they were in New Jersey, and even further away from the meaning of the words he was stringing together. Thinking back to how frightened I was at the potential of her having a tumor, I realize she probably would have been better off with that: at least there would have been a chance to reverse it.

It still took a few months after that point for the official diagnosis to come through, but by that point, I already knew what was wrong. I can't completely attribute this knowledge to some sort of amazing daughter/mom connection though -- It just so happened that I was able to see first-hand what early onset Alzheimer's looked like.

The mom of my boyfriend at the time had also been diagnosed with early onset Alzheimer's when she was in her mid-50s. By the time I met her, she was pretty advanced in the disease, and had already lost most of her speech. She mainly wandered the house, smiling, looking as though she wanted to say something, stopping short every time.

My boyfriend's sister told me the details of their mom's diagnosis and I remember thinking, “Holy shit -- that's what MY mom did, too!”

It started small. Forgetting words, getting turned around when driving, repeating stories. Initially, it seemed like stress -- and my mom was very good at playing it off. My mother was a registered nurse and during that time she was steadily subbing as a school nurse within the local districts. When she started to have trouble administering medication and treating the students, we thought it was anxiety, and she decided to take a break from working.

Then the paranoia set in. During senior year of college, coming home got weirder and weirder. Initially it seemed that she and my dad were just having problems and so she was retreating from the rest of the family. She essentially withdrew from everyone in the family -- she barely attended family functions and when she did, she sat sullen and unresponsive.

During my spring break, she pulled me aside in her bedroom and tearfully confessed how unhappy she was -- that she wanted to get out and alluded to wanting to leave my father. This revelation, coupled with her behavior in the previous months, had me beyond freaked out. While planning for my own graduation, I also began wondering what I could do to help my mom leave if that was what she wanted.

By the time I graduated, my mom had stopped talking about leaving; instead, she just kept repeating stories. I would call her and ask about things at home and she would generally rotate between three happenings from her day. At first I made jokes about it with her and she'd laugh it off, noting that she was tired or it had been a long day.

It wasn't until I flew home for a weekend visit before I finally said something to my dad. I came back to attend my cousin's bridal shower, which meant I pretty much ran around non-stop trying to prep beforehand. There were a few specialty items I was hoping to bring back to Texas with me from the Italian Market in my hometown, but I was nervous that I wouldn't be able to make it there in time.

“Don’t worry,” my mom reassured, “I can run there for you.”

I remember coming home after making some last-minute stops before having to leave for the airport, and asking my mom if she was able to find the things I wrote down on the list I gave her. My mom stared at me blankly. 

“What list...?”

I still feel a heavy pit of regret in my stomach when I think about how angry I got at my mom, accusing her of not caring about something that was important to me, and messing up my plans. (I wanted to share some of my favorite hometown treats with my friends down South, since most of the cookies, cheeses, and cheesesteak ingredients I grew up with were impossible to find down there, or at least three times as expensive.)

The frustrations of my past few months had finally come to a head. I was tired -- I was tired of trying to figure out my own life, trying to figure out what was wrong with my mother, trying to determine how I could make things better. I was used to my parents having answers, for them to be the ones to handle these kinds of painful and complicated situations. How could I figure out how to help them when I couldn’t even comprehend what was wrong?

“This is ridiculous, mom! We talked about this numerous times -- all I asked you to do was run to the store! I told you this was important -- I even wrote you a list! I just don’t understand what your problem is. What’s gotten into you lately? What the hell is wrong?”

It has been 7 years since that conversation, but I can’t forget the hurt look on her face. 

“I’m sorry,” she tearfully apologized. “I didn't mean to. I just forgot.”

Since then, my family and I have spent the last 7 years remembering just about everything for my mother -- gently reminding her of the year, of who we are, of who she is -- a wife, a mother, a daughter, an aunt.

We have learned to help her dress, to help her bathe, and help her eat. We watch her as she brushes her teeth, we hold each pill, and make sure she takes each one, one by one, hoping they will give us a little more time with her before she slips away completely.