Tuesday, June 30, 2009

Blame it on the brain #1

Say "aphasia."

Now, do you know what it means?

According to one of my dictionaries, it's "the partial or total inability to produce and understand speech as a result of brain damage caused by injury or disease."

Too sterile. I like the way the folks who have it have explained it to me. It's not so simply this: You have the word(s) in your mind, you know exactly what you want to say, but something else comes out instead or perhaps nothing at all.

While working on these brain-related books (brain injuries, strokes, brain tumors-brain cancer) I've been meeting a lot of individuals and families who cope with aphasia … a word that was likely never in their vocabulary until they had to deal with it.

Like the young, highly educated woman who had a stroke at about age 30 and when talking to her mom, sometimes "Dad" is what comes out. With a wink, her mom told me she only gets a little miffed when her daughter says "Grandma" instead of "Mom."

Blame it on the brain that's battling its way back from an injury, which could be from a stroke, disease or an external force. Not everybody who has those conditions has aphasia, and among those who have it, every case is different.

We'll talk about frustrating … next blog …

Sunday, June 28, 2009

It's the Alzheimer's, stupid! #3

Where was I … oh, yeah, more "It's the Alzheimer's, stupid!"

What else angers caregivers?

Being told by clueless people that there's nothing wrong with their loved one because he looks "fine." That basically translates into: "The problem must be with YOU."

Well, world, I'm going to announce something that will shock you! Ready? Most folks with Alzheimer's look "fine." It's what we cannot see that is the problem.

You may see two healthy "seasoned" people getting out of their car in the handicapped parking space. They have the disabled plate or tag hanging off the rearview mirror. You watch them enter the store and think, "How dare they! There's nothing wrong with them! They're faking it!"

Well, many a caregiver has shared with me the "time bomb" that could go off without much notice in their loved one with Alzheimer's. They may have to end their shopping quickly at times for a variety of reasons, because their loved one may:

• Become agitated and/or uncomfortable by too many people or too much noise in the store.
• Wander away and get lost, even one aisle away.
• Start opening packages because their brains don't comprehend anymore that something doesn't belong to them until it's been paid for.
• Need to go to the bathroom but don't understand how to get into a stall by themselves. And it's OK for moms or dads to bring into their respective restrooms a young child of the opposite sex, but society has not gotten too keen yet on a husband needing to take his wife into a public restroom.

Yes, it's the Alzheimer's, stupid.

Saturday, June 27, 2009

Spread those angel wings, Farrah

Sadness swept me twice on Thursday. First, when I heard of Farrah Fawcett's passing after a brutal battle with cancer.

Second, when the news of her passing was tossed aside like garbage to make room for news of Michael Jackson's sudden death.

You would think the world had ended. Well, it almost did because the Internet was reportedly maxed out from the surge of news seekers and messages of shock.

If only the world would convert a fraction of its energy and money mourning Jackson's death into REAL action and compassion in helping REAL individuals and families cope with REAL catastrophic life events. The money that will be expended on Michael this and that would put a huge dent into funding research into fighting the cancer that killed Farrah and people you actually know.

The money that will be spent on magazines and other media about Michael's life and death would give thousands of families the respite they desperately need in coping with everyday caregiving, the REAL stuff that doesn't make the entertainment news because it's not sexy enough.

And the TIME, the precious moments of life that will be lost in over-consumption of news about Jackson's odd life could be converted into volunteerism to teach children to read, cheer the lives of shut-ins, or simply offer some kind deeds to help many people survive another day.

Our nation's obsession with celebrities is getting ridiculous. If the people who follow that show about the couple with a half-dozen kids or whatever applied the same amount of time to their own families as they do on watching and talking about that over-hyped garbage, imagine the possibilities.

To the people who will spend the coming days wailing about Jackson's demise … get a life, get your own life. To the children who think their lives are over because the King of Pop is dead … get some new REAL role models.

Farrah wasn't perfect. She had more than her share of "blonde moments." Her child is in jail. One of history's most famous sex symbols had to face the embarrassment of the world finding out she had anal cancer, but look how strong it made her. She never gave up and shared her story to encourage other patients to fight that damn disease with every ounce of energy they can muster because we are stronger than we will ever give ourselves credit for.

She earned those angel wings the hard way, the brave way, the human way.

I'm not heartless about Michael Jackson, who was born the same year I was. I hope he finds the peace he never found on this earth. I'm glad that he's not being subjected to one more person taking advantage of him and making money off him. He's left all that far behind.

It's time we as a society do the same and put our energy, time and money into a REAL life, our loved ones' lives, OUR life. You may not make the 24-hour news channel, and that could be the best news of all.

Friday, June 26, 2009

Dare to ignore those who need help the most

I'm not a scholar of the Bible but one phrase jumps out at me, and, depending on which version it is, it's something to this effect:

"Inasmuch as you have done it to one of the least of these my brothers, you have done it to me."

Now, it doesn't matter what religion you are, because this is beyond religious labels. This is the basis of our human existence and connection on this planet.

Well, Illinois, the lovely state where I've resided for almost 30 years … the home of a growing percentage of wacko politicians and embarrassing scandals … the land of a string of greedy, corrupt individuals … yes, Illinois, is out to make history again as we teeter on a wave of cutbacks that will prove disastrous to the people who can do little or nothing for themselves, the disabled through birth, accident, disease or crime …

We now have a governor and legislature that are trying to wade out of this mess created by years of misplaced priorities, feeding pet projects, building monuments to themselves, mindless wastes of money, and simple loss of connection with the everyday lives families and individuals face.

It's time for politicians to stop being politicians. It's time to stop playing this political game of "I'll do this for you if you'll do this for me," tacking ridiculous self-serving amendments onto meaningful legislation or selling the souls of one segment of society to overstuff another. It's time to get past protocols that embellish egos so brightly that some people can't seem to stop admiring themselves in the mirror while many worlds fall into shambles around them. It's time to quit filling government job openings or college slots with friends and families and neighbors who don't have the credentials to do the job or who waste the professor's time.

We are a nation at the brink of collapsing … one individual at a time … and it's happening. Take away the respite care that gives caregivers the break they need … take away the group homes that provide specialized care and a unique emotional support system … take away the nursing home beds that provide essential 24-hour care in our loved ones' final days … take away the after-school and summer programs for children who are an inch away from becoming a casualty statistic in the streets … take away the mental health services that target those who have lost control of their lives …

Go ahead, dare to ignore those who need help the most.

Do that, and we will pay a price that is beyond the calculating capabilities of the most sophisticated minds and computers in the world.

Do that, and we will witness a wave of chaos, frustration, anger, abuse, abandonment and even death, because the human emotional support system will have been severed, stretched and stretched and stretched to a point where it snaps like an old dried out rubber band that falls in brittle pieces to the floor.

And I don't know about the rest of the country, but now Illinois has stopped funding the burial of indigents … just in time for summer when temperatures and tempers are already hot enough.

We all must accept responsibility for our fellow human beings, but we cannot pick up all the pieces when people refuse to fulfill their obligation as parents, as children, as spouses, as family, as friends, as employees, as bosses, as public servants … choosing instead to feed their own selfish needs and sing loud enough to drown out the cries around them.

The PEOPLE of Illinois, of any state, need to stand up and remember that those who need our help the most should not be the easiest to discard. These individuals didn't ask for birth defects, Alzheimer's, a drunk driver to hit them, to be shot in the head …

If we can't remember that first quote about caring for the least of our brothers, then give this one a try: "There but for the grace of God go I."

Wednesday, June 24, 2009

It's the Alzheimer's, stupid! #2

Let's keep tweaking this "It's the Alzheimer's, stupid!"

What else angers caregivers?

How about asking the caregiver or family member all about the disease when that person is right there. You know, questions like, "So, how long has he got?" or "You are going to be put her in a nursing home, aren't you?"

People with Alzheimer's aren't stupid. Now, people who ask those terribly insensitive questions, that's another thing …

Hmm, it's kind of hard to explain Alzheimer's and how it's a horrific, fatal disease while the person with it is right there. Imagine hearing every day that you have a fatal disease and that your brain is all screwed up and so on and so on. And if you have memory loss, it's like hearing the diagnosis for the first time every time.

Imagine the physical and emotional toll that takes. I know one family that stopped talking about the loved one's cancer in front of him because his Alzheimer's made it devastating to hear every time.

If you want to learn first-hand more about Alzheimer's, then ask the caregiver or family member off to the side and then be willing to hear the answer. (Just don't point at the person with the disease because they notice those sort of things and it makes them uncomfortable.)

I can guarantee that everybody has a different answer because Alzheimer's doesn't follow rules of logic or consistency … or mercy.

It's that damn Alzheimer's, stupid!

Tuesday, June 23, 2009

It's the Alzheimer's, stupid! #1

Let's twist the phrase that helped elect Bill Clinton … "It's the economy, stupid!" to "It's the Alzheimer's, stupid!"

Would that be a catchy enough phrase to attract and educate several generations that had better get used to that A-word and what it really means?

What angers caregivers?

Let's start with talking about the person with Alzheimer's as if they're not standing or sitting there. I know I've said this one before, but it needs constant repeating: They may not remember you or your name, but they remember the pain of being ignored or treated like a child. Acknowledge and engage them, even if they may not say much, because it's the Alzheimer's that's keeping them from finding the right, if any, words to participate in a conversation.

But they're still human and need to connect with other humans. You can be a quiet comfort by just acknowledging they're still HERE!!

Sunday, June 21, 2009

Go ahead! Teach the world about Alzheimer’s!

Yep, you’ve listened to the medical lingo, you’ve read all the “facts” about Alzheimer’s, you’ve witnessed its effects every day.

You could write THE book about this damn disease!

Well, do it! Start telling the world about this horrific disease because a lot of people are not paying attention. They’re ignoring the fact that Mom or Dad or Uncle Joe or Aunt Bea or whoever is having problems with memory or social skills. They blame whoever’s living in the same house with them for “letting it happen” or for telling lies.

Teach the world NOW how to help your loved one, how to help you. Don’t wait until you’re too exhausted to educate or they’re too far away emotionally to listen.

Saturday, June 20, 2009

Alzheimer’s: Stop the cover-up!

If you’re secretly covering up for a loved one to not anger or embarrass them, or to save the family from learning the truth about Alzheimer’s or dementia, stop it right now!

Stop the cover-up! Educate yourself, be open with family members and start making sensible plans based on common sense and the demands of our complex society.

Those so-called thousand points of light start with changing your own light bulb first so you can see better the changes that will evolve in your world. Prepare for them before they seize control of you.

Friday, June 19, 2009

Alzheimer’s: Go ahead and fight!

Are you going to let a person who has no business driving anymore, because of the effects of Alzheimer’s or dementia, continue driving so YOU can avoid an argument?

Then I want to you to imagine YOUR beautiful child or grandchild riding in that car with that person when they become confused at the wheel or are not paying attention.

The fight will easily fade. The horrors of an accident will not.

Go ahead and have that long overdue confrontation if necessary. Just make sure every word is fueled with compassion because your heart and life will be better for it.

You WILL survive that hard moment.

And so will everyone you love.

Friday, June 12, 2009

Another reason I love brain injury camp!

Here's the answer to that burning question from yesterday: Did John remember my name Thursday at brain injury camp?

Yes, he did! Despite the sprinkles and dark skies, it was another beautiful day of me saying "John!" every time he said, "Monica!" … plus "How ya doing?" and the everyday things people talk about.

I sit for a while next to another man I hadn't talked to before. As the noise of the rest of the crowd grows around us, I have to lean closer to hear what he's saying, and it takes a while to understand, but I ask him to repeat because I didn't catch parts of it. I wasn't going to pretend I got it and just say "uh huh."

His injury happened in 1988.

He's 38 years old.

He asks what I do, and I explain how I'm working on the book about coping with brain injuries. He asks if I doing lots of research. It takes me a while to grasp that he was saying "research," with an extra effort to get out the second syllable.

I want to learn more and I ask if he wants to go outside where it was less noisy. This is a man who is slumped in his wheelchair but gets himself around most of the time extending his muscled legs straight in front of him one at a time to move. We get to the door and he gestures for me to go first. I smile and say, "Thank you, sir." He nods at the compliment.

Outside, I lean close again to hear the words of fragmented sentences.

"How … are … you …" I repeat as he says each word. "Affected … by … the …"

Hmm, I really have to test my brain trying to understand that final word. Research? How am I affected by my research?

No, he shakes his head.

Re-something? Then he gathers extra energy to repeat the second syllable, "cess."

"Oh, I get it! How am I affected by the recession?"

He smiles. Victory! I get it!

"My work continues despite the recession. Families face challenges like Alzheimer's, strokes, brain tumors and brain injuries every day whether there's a recession or not. Unfortunately, that need never ends."

He nods in agreement …

I learned a lot at brain injury camp Thursday.

What did you learn?

Thursday, June 11, 2009

I wish every day was brain injury camp

I love the people at brain injury camp … the campers, the counselors, the staff, everybody.

I love watching what freedom does to persons with brain injuries. It literally sets them free to be themselves.

Last year at the first camp I attended, I wanted to cry the first day because I was so overwhelmed by the emotions of hearing stories of accidents, violence, lapses in judgment, being in the wrong place at the wrong time. The list goes on …

Last year at the conclusion of the first day, I thought I wasn't cut out to continue doing this series of coping books, the next three volumes, one each on strokes, brain injuries, and brain tumors-brain cancer. I thought I wasn't strong enough.

The next morning, I woke up with an infusion of strength more powerful than a thousand bowls of Wheaties. I couldn't wait to get to camp to see these individuals again! I realized that I had absorbed and processed a lot of emotions all within a short period and that "I" would be okay.

And the second and third days of brain injury camp last year, I was talking and laughing with individuals who were so grateful to be "normal" for a week. How they lifted and educated me! I couldn't wait until next year!

And next year is here! I recognized many of the returnees and saw some new faces. I love John, who stopped and looked at me as I got out of my car. "I know you! Wait, now don't tell me." I could see him searching the many file cabinets of his brain looking for my name. I laughed as he made a goofy face and asked for a small clue. I waved my pen in the air. "You're the writer! Duh, you'd think I had a brain injury."

It was okay finally revealing my name, and all day long, every time we'd see each other, he'd say, "Monica!" I'd respond, "John!" When I left for the day, I said I'd see him tomorrow and we both had a good laugh over the fact that we'll probably go through the same thing the next morning.

And that was okay.

In fact, it was beautiful.

It was equally beautiful seeing these campers, counselors and staff literally embrace each other this magical week as the persons with brain injuries are "normal" in everyone's eyes. No one is staring at them when they walk or talk funny. No one is steering their children away from the weird looking person in the wheelchair. No one is judging or ignoring them.

What's the song that says something about wishing every day was Christmas because it's such a wonderful day …

I wish every day was brain injury camp … in the REAL world, OUR world.

Now, that's heaven on earth.

Tuesday, June 9, 2009

Happy birthday Donald Duck!

It's Donald Duck's 75th birthday Tuesday, June 9. I remember when he turned 50, and I wrote a column for the weekly newspaper where I was working at the time.

I think I compared how I had waddled around just like Donald when I was pregnant. I envied how his clothing never went out of style. And when you couldn't understand what he was saying, you understood what he meant.

And now I just read that Donald is the Jerry Lewis of Germany. Germans apparently love Donald more than Mickey Mouse and find him hilarious.

I think Donald exhibits the best and worse of human traits. According to the Disney folks, he has a good heart and most of the time, good intentions. There are times when he's a loser, but never a quitter.

I guess I've always appreciated Donald more than Mickey because Donald is more human. Mickey's great but too perfect. And Donald's flapping bill is always more animated and entertaining than the three circles that make up the Mouse's head and ears.

Some of Donald's favorite sayings … are they as valid today as 75 years ago?

Well, "Hiya, toots!" has gone out of vogue as an old-fashioned sexist term.

"Aw, phooey!" is considered a bit old time, too, and unfortunately has been replaced by a growing vocabulary of four-letter words.

And I can't remember the last time I heard someone say, "Oh boy, oh boy, oh boy!"

However, "Oh, yeah?" just never goes out of style. It's an expression that allows us to challenge somebody or the world when we feel like we're being picked on or beaten down. To me, it's the classic response that means "I'm not giving up!"

Donald, you can call me "Toots!" anytime you like … just as long as you stay 24 years ahead of me on the candle count …

Sunday, June 7, 2009

Rinsing away more than shampoo

Will pick up on the challenge theme again in a day or two …

It's the beginning of National Shampoo Week. It's a massive industry gone wild with three little words: Wash, rinse, repeat.

I think I was in my early 20s before I realized those instructions were the way to get me to buy twice as much shampoo. So I break the shampoo law every day by not obeying "repeat." Saves water and minutes, too, and the length of time the cats stand meowing at the bathroom door to get in.

Some days I wish I could rinse, not that man, but all the truly meaningless woes of the world out of my hair and send all my troubles down the drain … like the jingle goes.

Would I solve all the problems of the universe if I stayed in the shower long enough to repeat the shampoo process, to massage my mind and breathe in more steam heat? Nah, everything would still be quite fuzzy because I can hardly see anything without my glasses.

I honestly can't remember if I've cried in the shower. I have some friends who do because that's their only refuge from the daily challenges of caregiving or the place where they can lament a deep pain or grieve a loss in private …

And there are some of those individuals with Alzheimer's who suddenly fear the way the water seems to batter them … Their brains can no longer understand the soothing sensation and purpose of the spray …

As the rains from the heavens cleanse the world and soak deep within the soil to nourish life on this planet, the shower can do the same on a smaller scale with each of us, inside and out, clearing the film of loneliness, despair and sorrow from our vision and heart. You've just got to let it in.

Repeatedly treat yourself and forget the second round of shampoo …

P.S. And if you're not using a shower head that reduces the water flow, then get one! Be responsibly selfish!

Wednesday, June 3, 2009

Challenges I thought I'd never survive #2

Continued from yesterday …

I don't know how I survived those nine months of loneliness while Roger was at work. I had zero friends to talk to in person or run around with. At least I had a phone to call my family. I don't know how years ago women left their families to go across rugged terrains or stormy seas with their new husbands, sometimes a man they really didn't know all that well, let alone love.

And at least I loved my guy and he loved me! Though it was quite a while before my cooking skills advanced beyond fixing hamburgers in the old hot plate griddle style popcorn popper in college when he came to visit. Yes, Jeanne, that first year of marriage was a challenge …

Finally got a reporter job on a weekly newspaper in March 1980 in a suburb of Peoria. Finally started meeting people. We bought an old house in April 1980 in an even older neighborhood here in Peoria and that's where we still live today.

For some goofy reason we decided to have a baby and I realized that I knew zero about kids. Well, we had a not-so-little boy on June 17, 1982, Gordon, all 9 and a half pounds of him. He was soooo demanding and had to be introduced to the world via a c-section. This was more than two weeks after his due date and without him ever shouting via labor pains, "I'm ready! Let me out!" To this day, we wonder if he would have ever come out on his own. He says he was in no hurry because it was all nice and warm and cozy in there. He tried to use that excuse for years to not get out of bed for school.

I also had to acknowledge that I had never changed a diaper in my life until we brought him home and Roger went to work second shift that first day. All alone, I wanted to run away like Prissy from Gone With the Wind and shout, "I don't know nothin' about babies PERIOD!" Well, this kid and I looked at each other and agreed he wasn't going back where he came from, so we were going to have to make a few compromises …

Oh my goodness, I survived all that. I survived the terrible twos and seven-year itch though there were days I wanted to walk out the door and relinquish all responsibility for another human being.

However, there were many, many more days when I rushed to get inside that door and share hugs and kisses while gathering all the dirty dishes …

More tomorrow …

Tuesday, June 2, 2009

Challenges I thought I'd never survive #1

Facebook has been an incredible addition to my life, both personally and professionally in the last couple of months. (And I don't do any of those goofy quizzes or games because I don't have time!) I'm "seeing" high school and college friends I haven't connected with in 30 years or more, and learning as much about myself as them at the same time.

A college classmate just sent me a message asking what I've been doing with myself since we graduated in 1979. And I got to thinking about all the challenges of the last three decades of my life … the ones I jumped into with no, some or great fear, or no, some or great enthusiasm.

It's something we all experience … or should if we're an active participant in this thing called life …

Dear Jeanne,

Well, Roger and I have stuck it out and for some crazy reason like and love each other more now than 30 years ago this July 21. Geez, that's a long time! We joke that we have the divorce papers but I've lost them in all the piles of paper I have accumulated from all my book projects. Actually, my work space resembles my old dorm room and I think you came by many a time back then and just said "tsk tsk tsk …" Well, you'd do that here :-)

My brain was mush for nine months after we got married because I couldn't find a job and had no friends here in Peoria except Roger and whoever he knew from work …

I stopped typing as I remembered those days. Back then I felt like I knew absolutely nothing about marriage and wondered if I had what it took to make it work. I had witnessed some unhappy unions and knew there were things I'd do differently in my own. And those few bride magazines I had read before the wedding had zippo tips on the realities of everyday married life …

More tomorrow …