I’m currently traveling on a long trip and as I was frantically trying to figure out what I needed to pack and making sure I didn’t forget anything, I remembered mom. When we were growing up there were four things my mom always packed. She swore by them: Tylenol, Benadryl, Immodium and Gas-X. With that toolkit she could fix 99.9% of whatever body ache or pain that came up on the trip. I remember when my brother and I would go off to camp in the summer, these four things were always in our toiletry bags. And I have to admit, to this day, a rumble in the tummy, a itchy eye bout, a head ache, just as mom predicted, 99.9% of my grown up travel dilemmas can at least be eased by mom’s go-to kit.

I remember when I was boxing up and cleaning out mom’s house a couple of years ago there were two stacks of records. One stack of records I’d collected at garage sales and old music stores. They were mostly popular titles I also had on cassette or CD that i thought also having the album would make a cool novelty.

The other stack was the collection of my mom and dad’s records. Over a couple of decades it had become one tangled and inseparable expression of the young people they used to be when they had no idea how hard life would become.

I loved my parents record collection because as a kid I’d look through it every few years, and I’d see it with a slightly older, slightly more experienced eyes. I’d know more of the artists. I’d be more interested about what records were in there and why.

And on that particular day, when I was sorting both the stacks of records for the last time, I noticed that there were three Carole King Tapestry albums. One the purchase of my 20 something single father. One the purchase of my 20 something single mother. One the purchase of their 20 something son.

And when I hear that album, I think of those three people and how happy they were being young and with their whole complicated lives ahead of them.

We have been to doctor after doctor over the last 8 or so years, trying to figure out what is wrong with my mom and how to manage it. From the early days when psychiatrists told us it was bipolar disorder or delusional disorder, to the period where we were told it was mania and other associated disorders, to her diagnosis of dementia and finally early onset Alzheimer’s. If I’ve learned anything in this, it is that psychiatric disorders and diseases of the brain are hard to diagnose, hard to treat, and hard to live with.

We have a neurologist that I really like and trust these days. She’s smart, she’s matter of fact (even when it isn’t good news to have to hear), and she really seems to want to know and care for my mom. What more can you want, right? And she has a new diagnosis for us now, Frontotemporal Dementia. And when I came home and started to do my research on the web about it, reading the list of symptoms was like reading our history over the last decade. It was the first time I’ve felt like we really had a diagnosis that fit. And there’s no cure, there’s no test for it and no way to definitively diagnosis it while she’s alive. But it feels like the right thing. And that’s a lot of what you go on–what feels right. A lot of what you learn to live with in this is the ability to live with uncertainty and make the best decisions you can without ever knowing the right answer. You just move on what feels “righter” than wrong. And this feels the “rightest” of anything we’ve heard before. It doesn’t change what we do or how we love and care for mom, I know. But still it is a HUGE relief to feel like you finally know what’s wrong…even if there is nothing more you can do about it.

Symptoms of Frontotemporal Dementia

Behavioral changes:

Can’t keep a job

Compulsive behaviors

Inappropriate behavior

Inability to function or interact in social or personal situations

Problems with personal hygiene

Repetitive behavior

Withdrawal from social interaction

Emotional changes:

Abrupt mood changes

Decreased interest in daily living activities

Failure to recognize changes in behavior

Failure to show emotional warmth, concern, empathy, sympathy

Inappropriate mood

Not caring about events or environment

Language changes:

Can’t speak (mutism)

Decreased ability to read or write

Difficulty finding a word

Difficulty speaking or understanding speech (aphasia)

Repeat anything spoken to them (echolalia)

Shrinking vocabulary

Weak, uncoordinated speech sounds

Neurological problems:

Increased muscle tone (rigidity)

Memory loss that gets worse

Movement/coordination difficulties (apraxia)

Weakness

Other problems:

Urinary incontinence

I don’t know what it’s like to take care of a baby, but I imagine one of the joys of it is that it’s not as complicated as taking care of a teenager.  I mean it’s hard to necessarily know what a baby wants or needs because they can’t verbalize it.  Though, at the same time, their needs are very distilled.  Eat, drink, laugh, cry, poop, pee, sleep, get sick, get better.  With a teenager, the needs increase exponentially.

That’s what was on my mind Sunday when I spent the day with mom.  As she get sicker, there is an easiness to it because her needs are very distilled.  Eat, drink, laugh, sing, poop, pee, sleep, get sick, manage being sick.  And there is some comfort in that.  She is less verbal.  She parrots more than she initiates so it’s difficult to really know what’s wrong or what she’s thinking.  There is a relationship complexity that was lost and mourned, and it has been replaced with simplicity.  We do less, but we need less.  

Well, we gave it the old college try but once again the roommate situation hasn’t worked out.  I was optimistic that this time it might work.  There were hopeful signs that this could be the right time.  As the disease has progressed this last year, mom is slower and calmer in some ways.  She has fewer manic episodes.  And in general she talks less.  Well, that may not be true, she talks differently.  It’s true she doesn’t really initiate much conversation anymore, but she is still a talker.  And that was in the end, the demise of this current roommate experiment.

It doesn’t take long with mom to realize she talks to herself all day long.  She gives herself simple instructions out loud, “Get out of bed, Kathy,” “Turn off the lights, Kathy,” or “Let’s go to the cafeteria, Kathy.”  And she also hangs on one word at times, repeating it 10, 20, or 50 times if someone doesn’t intervene to tell her to calm down and stop repeating.  “Let’s go for a ride in the car, Kathy.  Ride.  Ride.  Ride.  Ride.  Ride.  Ride……”

Anyone can see how day in and day out of this could blisteringly annoy you.  And couple with it that my mom’s volume button seems to have broken on high, and it’s really bordering on maddening.  

I got a call from the nursing home the other day that they were moving the roommate into another room.  Evidently the nurse was two rooms down and could hear my mom and her roommate yelling at each other.  Mom was doing her instruct, repeat, instruct, repeat cycle and her roommate was screaming at her to shut up!  Which only made my mom talk louder: instruct, repeat, instruct, repeat at full volume.  The roommate tension was starting to affect others on her hall.  

The nurses and staff at the home are very sympathetic.  They realize that this is just the way her version of this disease manifests itself.  And for every Alzheimer’s and dementia patient on my mom’s wing, there is a different presentation of the disease, different symptoms, different behaviors, different treatments.  The only thing that doesn’t change is the enormous patience and devotion of the caregivers who work tirelessly to make an unfixable situation livable.  

Her doctor made some adjustments to one of her meds to see if there is an impact.  We will see in a few days.