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.

Daddy-Daughter Dance at the Shooting Range…

My dad used to call me his “princess” or “buckaroo.” Not anymore. My dad was always my favorite parent. He wasn’t exactly the disciplinarian, unless I did something really bad like crash my car—5 times (only 3 accidents were technically my fault)—and he would always indulge me whenever he could. The perks of being an only child and his daughter, I suppose.

But with mom being sick, our relationship has changed…. he’s a husband and parent and I’m a daughter and parent of a wife and mother. Strange. We don’t always agree on her caregiving…. he’s still my dad and her husband, so while our arguments aren’t exactly arguments, they’re tifts, mini squabbles that end fast, never escalating, just disagreements—I don’t know what they are really….. some jacked-up daddy-daughter dance, I think we’re both trying to do what’s best for our demented loved one without pissing off the other.

Clumsily treading some twisted dance floor, never looking at each other directly in the eye, that would be awkward… an uneven parquet floor, desperately avoiding each other’s toes. It’s often rather gauche. And sometimes subtle moves are made to steer the other partner in another direction. Trip. Ouch. My toe.

I miss my dad. I don’t have any other family in Phoenix and I often feel very alone. It’s just the two of us—and sometimes, I do wish my mother’s disease would take her away, so I, selfishly, could have my daddy back….. dinners, lunch, drinks… political conversations, movies…. maybe even holidays with friends… These days, holidays aren’t my thing—I like them, but I’m not into them because for me there’s no point…. instead they’re just a tragically grotesque reminder of what IS and what will never BE.

“We should visit your parents again, maybe lunch or take your dad shooting…”

That’s HIM. The man I’ve been dating now for almost four months. I couldn’t believe it—he actually wants to spend time with my family. That’s weird. He wants to hang out with my dad. He is willing to sit through lunch while my mom forces him to eat carmel popcorn (she shoveled a handful onto his plate the first time he came over, he graciously accepted). Who is this dude? This CANNOT be real or HE cannot be human. But he is. He accepts me and my family for who we are. He knows that I miss my dad and that I wish I could have my Kat and dad time…. without my mom.

So this Saturday, the three of us are going out shooting and then bringing back Chinese food for lunch with the man and the fam.

Ramblings of a Damned Daughter. Love. Family.

I’m just gonna say it. I am not digging Christmas this year. At all. 2009 has been, all in all, a challenging year for me and I just don’t feeling like toasting the holidays. OK, maybe I’m focusing more on the negatives of the year — there have been plenty…… but lots of positives too. Good job. Good friends. Lots of love. Kind acts. Two balls of fluffy kitten love. Sunny skies in December. Parents who love me very much. A mother who still tries to mother me……………… in her own demented way. I suppose love is the thing. Love takes strength. Love is courage. Love is fearlessness. Stare love in face. See what you get back.

Interestingly, I’ve been called a pessimist or negative a lot this year……
thing is, I challenge anyone to walk in my shoes (or any caregiver’s shoes, especially the full-timers) and still see the silver lining every second of every day.

I struggle with that label: NEGATIVE. But the thing is, this disease never really lets me move on. Every week is a reminder of the loss. When the holidays come around, it’s like taking a BIG YELLOW HIGHLIGHTER and highlighting the fucking loss……… specifically, the loss of family or what I always wanted family to be. Happiness, lots of people, a big living room filled with tinsel and laughter.

My heart is filled with a mixed bag of emotions…………….sadness, happiness, grief, anger, passion, frustration, love, joy, wishes, fears, anxiety, wildly vivid dreams, HOPE.

I confuse myself.

There are days when I feel strong. There are days when I am my own worst enemy. I have no idea when this is going to end. It’s terrible to say, but when I think of HER death, I think of the ties that bind being cut loose. FINALLY. Freedom? I don’t know. Will guilt consume me instead? Will the holidays serve as a reminder of how I failed her or how I should have done more?

Negative.

Blue.

Life is good.

Optimist.

Glass half empty.

Full.

Family.

L’amour.

Death.

Dark.

Angel.

Dismal.

Blue.

Me.

Nefarious thoughts.

I have no bits of wisdom when it comes to any of this.

I could give you my usual HOLIDAY TO DO LIST: Keep the crowds to a minimum, it may confuse your demented parent. Try to stick to the schedules. Don’t ask, “Do you remember…….,” avoid celebrating around sun downing, etc. You know this. You can Google this…………. instead, I want to talk about the caregivers and how the holidays affect all of us, part-time, full-time, near and far.

Dementia is a TERMINAL disease.

We are the damned ones.

Oh dear.

This post has turned quite negative.

I’ll leave it as such.

A dash of hope.

There is a light, but there is also another tunnel behind it.

REALIST.

She Forgot Christmas

The title of this entry pretty much sums it up: My mom has no idea that Christmas is just a little more than a week away. I suppose I shouldn’t be that surprised, but I am. Chr338184498_8401e2c335istmas was never a huge ordeal in my home—it was usually just the three of us: me, mom, dad, and, of course, the cats. But like most families, we had our traditions, not many, you know, just a few. One of my mom’s traditions was to collect Christmas tree ornaments with the year etched on the ball. She started this tradition in 1981 or 1982. Time flies. I remember going to the Hallmark store in the Muscatine Mall and choosing the ornament with her. Oh, how I was mesmerized by the colors! Still am.

I always loved Christmas, even during those lean years as a pre-teen; and my parents, despite their finances, tried to make sure there were plenty of gifts under the tree for me to open. Now, Christmas is just plain sad… I am sad. I spoke to my mom on the phone the other day and she was excited that she received some shirts in the mail from my cousins (at least I think they were shirts, she often mixes up her words, so they could have been shoes or PJ’s or something else). They were her Christmas presents! She didn’t realize that those shirts were her gifts and that she was supposed to wait until Christmas Eve to open them! It was then that I fully realized—stunned, even though I had suspected as much based on earlier conversations—that she truly had no idea it was Christmas.

I wish this wasn’t happening. Game Over. I want to start over. I want a new life.

Dear Santa, please make my mom healthy and normal again. Love, Kathy

I wasn’t at my parent’s house last year for Christmas, and although my mom knew that it was Christmas then, I think she forgot about her ornament collection. Maybe this year I’ll pick up her tradition and if I ever have any children of my own, it’s something I can pass down to them—something from the grandmother they may never meet. Last year, I decided to start my own tradition: I asked friends to give me an ornament that would always remind me of them. Gotta keep your loved ones close.

Art by Men and Women Living with Alz

Hanging in my kitchen, I have a plastic butterfly that my mom painted at her adult day care center. I keep this little masterpiece around not just because it reminds me of my  mom, but it’s actually very well done, in my humble opinion. Mom knows how to choose her paints!

Of course,  it should be said that just because your mom or dad is living with dementia doesn’t mean they can’t create beautiful works of art—FYI, there’s still time to buy your holiday cards created by folks living with the disease—In fact, according to Dr. Arnold Bresky, a Southern California-based preventive gerontologist, using music and art can help slow the progression of Alzheimer’s.

“The brain works from numbers and patterns,” he says. “Art does that. I use the Michelangelo grid system, and we start from the basics. These people have no art training.”

As we age, he adds, “our creativity goes up, not down … During the creative process, you’re using parts of your brain that you haven’t used before, and that sets up new connections.”artwork3

And now his patients are exhibiting their work at the Burbank Senior Artists Colony on December 19. Some 20 drawings will be showcased that day, so if you’re in the area, be sure to support!

You can read the rest of this article, which appeared in The Los Angeles Times, by clicking the link.

This Holiday Season…

Alzheimer Association holiday card

Alzheimer Association holiday card

Celebrating the holidays with a demented parent is sometimes just plain sad. It was maybe three Thanksgivings ago when I first realized my mom had no idea what we were doing or why. All she wanted to do was eat and watch her TV show… Wheel of Fortune. I was so hurt and annoyed that I couldn’t get her to shut off that damn television set. My dad sat in silence and I sat there lost in my head wishing for the perfect family celebrating the perfect Thanksgiving. Still, at the end of the day, my mom enjoyed herself, clapping whenever a contestant (she wants everyone to leave a winner) solved a puzzle.

Ah, so what’s the point of my very depressing intro: An article appeared on CNN.com about this very issue—coping with a demented relative during the holidays. Remember, while this is supposed to be a joyous time of year, and it most definitely can be, it may be stressful on your parent too… new faces, travel, and a change of routine can be incredibly scary and confusing. That said, I thought I would share this piece with you since it may not only help you out this holiday season, but also any out-of-town relatives who may not know how to interact with someone suffering from dementia.

What if the person who has Alzheimer’s disease doesn’t remember who I am?

Well-meaning friends and family often pepper the patient with the question: “Do you know who I am?”

“That’s obnoxious — you want to avoid that,” said Beth Kallmyer, director of client services at the Alzheimer’s Association.

Rather than quizzing someone’s memory, she recommends introducing yourself with something like, “I’m John, your son” and other relatives by saying, “Here’s my wife, Jane.” Be reassuring, hold their hands, and smile and remind them who you are.

Rather than trying to figure out what the person remembers, reassure them by calling them by their name, Kallmyer said.

The loved one no longer recognizes me. What do I do?

After realizing that the person no longer recognizes his or her loved ones, some visitors are at a loss for words or feel apprehensive. Eric Hall, the president and CEO of Alzheimer’s Foundation of America, recommends having a conversation, even if that person seems unresponsive.

“We become uncomfortable doing all the talking,” he said.”Continuing to talk to them is an important piece. It’s awkward for us, but if we stay engaged, it means a lot to them.”

Although the patient may not have memory, he or she still has emotions and the ability to pick up vibes and read body language. Use the person’s name, maintain eye contact and speak slowly, Hall suggested. Ask one open-ended question at a time, giving adequate time to respond.

He calls it the 4S’s for communicating: simple, slow, show and smile.

“Simple sentences are much appreciated by someone with Alzheimer’s,” Hall said. “Say it slow to allow enough time to capture words or questions. Show what you’re saying, using facial expressions, body language and gesturing. And smile — it goes a long way.”

What should I do if he or she keeps asking me the same question?

This is common for people with Alzheimer’s, Hall said.

“The problem is that they cannot remember your response. Instead of answering the question a second or third time, reassure the individual that everything is fine,” he said.

The patient may not be able to remember or process the answer, so they repeat the same question almost 20 to 40 times a day.

“Our first instinct is to answer the question,” Hall said. “We’re under the assumption that the other person gets it. But in this regard, it’s not happening. Instead of becoming frustrated, smile and give an assurance everything is fine and sort of move on.”

What are some habits to avoid?

One misconception is that amplifying their voice will somehow make it easier for the patient to understand.

“People talk loud, they just assume they have a hearing problem,” Kallmyer said. “It’s obviously annoying. They can hear OK. You don’t need to scream at them. You don’t want to patronize them. The biggest thing I can say is slow it down and give them time to answer.”

If a conversation topic seems to confuse the person, move on to a different subject. If the person with Alzheimer’s says something that’s incorrect, resist the urge to correct them.

“When you’re correcting someone, it agitates them,” Kallmyer said. “It’s our nature, you want to correct someone when they’ve got something wrong, but it doesn’t matter.

You can click here to read the entire piece by CNN.com’s Madison Park.