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.

10 Comments

  1. It’s a cruel day, as many other days. My Mom is at a final stage, she got sick twenty years ago. Many comments on how strong her heart is, many remarks on how udeserved a cross can sometimes be.
    She doesn’t even see the flowers, so Mother’s Day is for us daughters not for our mothers, I believe. They don’t recognize us but we know who they are, even though they can be our Sleeping Beauties, close to the end. They perceive our presence anyway. No matter what doctors say.
    I’m 44 and reading your blog made me think of my youth, when at 25 I was familiarizing with Alzheimer’s disease. I’m not a Mom and I’m single child.
    I started a blog as you, some years ago. It’s a drop in the ocean but I think it’s the only way to raise awareness when institutions just turn a blind eye, you know. Mother’s Day is an occasion to ponder also on my future, you’re right. Maybe I’m lucky not being a Mom: if baby-boomers are totally neglected, what will it be like for the following generation?
    Thank you for this blog.
    Hugs

  2. Many thanks for your eloquent thoughts……for the first time in my life, I didn’t see my Mom today. It felt strange but I really needed to spend the day with my husband and son and not worry about her – for just this once.

    Kathy Daley

  3. Thank you, and I completely understand about not visiting your mom today… at the end of the day, we all have to take care of ourselves, keep ourselves healthy physically, mentally and emotionally.

  4. kathy, i shared your piece and a comment on facebook. i’d like to be friends there: linda smith simpson.
    as always, my best to you.

  5. My mil was just diagnosed with ftd. I would love to talk with you if you have time. Please MSG me, amg1214@hotmail.com

    We are just learning about ftd now and mom is going through major mood swings. She has been struggling with this Dow quite awhile and in the past 12 months has been making poor decisions. Anything that you suggest for how to deal with different stages would be so helpful. I feel like our hands are tied and we have to just role with the punches. Was there anything that helped your mom when she got really upset? Thankful for your time and I wish you and your mom all the best.

  6. I sit here in tears completely empathizing with everything you’ve said. my mom too has ftd and was a sweet gentle generous woman. I thank you for this post, as someone without siblings, its easy to feel like im completely alone in this struggle. I appreciate you just being there. its somehow comforting knowing that there are other daughters (and sons) who feel the same way and were robbed of their sweet little mothers through this disease. Thank you!

  7. “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.”
    I remember this vividly about my mom as well. You’ve given me a wonderful gift today with this piece. It’s remarkable how misunderstood dementia is as a disease; it’s an incredibly unique illness. A person could describe 10 cases of dementia, and they could all look different from one another. But those kisses and hugs and knowing that your mom recognizes and feels safe with you, well, that is something we share. I’m glad you see the beauty in that. Thank you again, Vicky

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