Mother’s Day & Dementia… My Own Op-Ed (please share, please spread the word)

Another Mother’s Day rolls on by….

Mother’s Day is an awkward holiday. I say awkward because while I understand why we make such a fuss about this day, I can’t help but find it to be somewhat, well, insensitive — to put it bluntly, Mother’s Day is another reminder of what I, and others like me, don’t have. My mother is alive, however, she is far from well. My mother is slowly dying from Frontotemporal dementia. FTD, or Pick’s disease as it’s sometimes called, affects the frontal and temporal lobes of the brain, or the area of the brain that makes us who we are. Call it your personality center. Like Alzheimer’s disease, FTD can cause memory loss, but it can also cause dramatic personality changes, including apathy; many lose their ability to communicate, and because the disease gnaws away at the gray matter that controls behavior, many with FTD act out; they may yell, become socially inappropriate, impulsive, aggressive and completely incapable of understanding that their actions have consequences. Adding to an already challenging and misunderstood situation, some individuals, like my mother earlier on, don’t even realize that something is terribly wrong.

The result for many of us with a “behavioral” parent is that we live with the stress, the stares, the comments, or worse, we live in fear of being asked to leave yet another assisted living facility.

Dementia is not a quiet disease.

Alzheimer’s disease is the number one type of dementia, accounting for about 50-to-80 percent of dementia cases. Unfortunately, more needs to be done in terms of educating the general public about this and other, lesser-known dementias like FTD. Alzheimer’s disease is the sixth leading cause of death in the U.S., and unlike diseases that were once considered a death sentence, i.e.: heart disease, breast cancer, prostate cancer, HIV/AIDS, and stroke, dementia can’t be cured, prevented or even slowed. This is not a manageable disease, and much more needs to be done in terms of funding and research. Today, more than five million Americans have Alzheimer’s disease and that number is expected to hit 16 million by 2050. To put that into perspective, according to the 2011 U.S. Census 3,880,244 people live in Maricopa County alone, and 6,482,505 live in the state of Arizona.

This disease is also expensive, and family members are often the ones who do the heavy lifting — emotionally, physically and financially. Just last year, some 15 million family and friends provided over 17 billion hours of unpaid caregiving. If you put a price tag on their time, it would amount to around $210.5 billion.

This is the calm before the Tsunami.

I always say, we have no survivors. My mother can’t tell you her story. She can’t even tell you if she is in pain. It’s difficult to talk about who my mother was because she’s not dead — to talk about her in the past tense, to say “she was” sounds so cruel; and yet, sometimes the only way to describe the woman who raised me is in the past tense. My mother was a sweet, gentle soul who devoted herself to her family, to her friends, even to complete strangers. Everyone who knew my mother loved her. She was the heart of our little family. Though the disease has robbed her of so much, her core — that gentle soul — remains intact. Today, when someone approaches her, she just wants to hold their hand or give them a kiss.

Like a child, she seeks love and affection.

As each year rolls into the next — I started noticing something was wrong in 2004… I was 27 — my memories of who she was before FTD fade. I suppose that’s time doing what it does best. And then Mother’s Day comes around. For me, it’s a tragic, in-your-face reminder of what I long for most. Seeing daughters having brunch with their mothers, laughing and talking… I tend to turn away. It’s just easier that way.

My mother doesn’t know my name, she doesn’t even know who she is. Thankfully, she does recognize me. Every time she sees me, she smiles and showers me with kisses. She tucks my hair behind my ear. She takes my hand and, in her own way, tells me about her day as we walk. Even though my mother’s language ability has been reduced to no more than a few words, I understand her. She is my mother, after all.

Yes, I would love to enjoy the kind of relationship that develops between adult daughters and their mothers — that special friendship which occurs later in life. But that’s not my reality. It never will be. This is my reality and I’ll take what I can get because we’re on borrowed time. One day, she won’t recognize me. She’ll just stare.

Hopefully, though, she’ll still take my hand and walk with me.

To learn more about Alzheimer’s disease and other related dementias or to make a donation visit http://www.alz.or/dsw.

Squishes

It’s been a while since my last post. Sorry about that. New job and all… these blog posts are sometimes tough to write… not because it’s especially difficult to express myself, but rather because I feel like we’re in a bit of a lull. Nothing is really happening with my mother. She’s mostly the same. I see little changes… but for the most part, she’s not any worse… I suppose the biggest change, which I’m clearly used to—already—is her poop situation. She has more accidents than say a year ago… but, you know, what can we do? It is what it is. Funny how you just accept things. Deal with it. Cope as best as you can. No point in crying. It won’t remedy the situation. I’ll use diapers when we’re going out for long periods of time—or rather, I will try to diaper her. Not always easy. Especially when your own mother is stronger than you are.

Anyway, my point. Changes. Better. Worse. Happy. Sad. Not really…

Because of my mom’s type of dementia, she is never “lucid,” whatever that means… there are no moments of wonderful clarity where my mother returns to her old self……………. my guess is that when someone actually has a lucid moment it’s like walking out of a dense fog, only to walk back into it again as the moment passes………………… my mother doesn’t have those moments………. she never really did.

However, she did do something recently that was just precious, maybe that was a glimmer of lucidity—sorta, kinda……frontotemporal lucidity, maybe…. I should preface this story by saying that I love of cats. I absolutely adore them, especially my own two cats……. I grew up with cats. My mother was also a huge cat lover………… we could never say no to a poor, homeless cat—which would explain our collection of cats over the years………….

Jon, my boyfriend, was over at my parent’s house. He has only known my mother as she is today. Severely demented. As her disease has progressed, she has sort of forgotten that she loves cats…. it’s actually rather sad, because two of her cats still try to rub up against her legs or simply vie for her attention. Most times, she just gets annoyed with them…. or pushes them away…. or ignores them……… occasionally she’ll pet them, but she doesn’t seem to understand that they want her to love them… I will say, she remembers that she has to feed them, so I guess that’s still there. Well one evening before dinner, my mom was sitting in her chair when her cat, Emilio, came walking by. Emilio rubbed his head against her ankle and she actually picked him up, held him in her arms and gave him a big squish—or a hug. I, much to my cats horror, am a massive squisher… but when we squish, both my mother and I make a little noise… Jon smiled… “So that’s where you get that from….” He saw a piece of me in my mother. I had forgotten about that myself… I don’t know what qualities I have inherited from my mother….. sometimes I feel like my memories of her are lost in that same fog…. yet I have no lucid moments… sometimes I dream about her, but she’s demented in my dreams.

I have never dreamed about my mom before her disease….

My Demented Mom On The Phone

I debated whether or not to do this, but I also think its important to hear her…… she is mother, a wife, an aunt, a friend, a daughter, a teacher, a sister, a daughter-in-law, a sister-in-law and more. This disease may rob of her of her memories and her self, but she’s a human being who deserves to be loved, to be heard and most importantly, RESPECTED. I just wanted share a piece of her. Her voice.

In a nutshell, she’s asking me why I didn’t make it on Sunday and if she’s talking to her daughter. She goes on to ask me to come over to take her to church (fruita) because wasn’t able to attend.

My Demented Mom on the phone

She Didn’t Recognize Me

Mom and dad popped by the house the other day to pick me up and take me to the airport. Nothing unusual. Opened the door, the ‘rents walked in, hugged dad and prepared for my mom’s usual, OVER THE TOP, HUGS AND KISSES… “I luf you! I luf you! You’re my husband! You came out of ME!” But nothing. She said hello and just looked around.

She had no idea where she was or who I was! In fact, she seemed confused.

It was surreal. I wasn’t hurt or angry. I was actually glad she was calm while I gave dad the tour of my house and showed him where the cat food was stashed.

About 20 minutes later as we got into the care she asked me if I was her daughter.

She looked at my dad, “Is that our daughter?”

Yes Margo.

“Are you our daughter?”

Yes mom.

“Mijita! OH MIJITA!! MIJITA MIJITA!”

I’m not especially surprised that she didn’t recognize me. It’s part of the disease. It’s more trippy than anything, and I can’t change how this disease progresses, nor can I take it personally. You know, I think I’m so used to this life, this shattered life—that is the nature of her disease—that nothing really phases me.

Nothing really hurts anymore.