Thursday, July 30, 2009

If I knew then what I know now about brain injuries

Thanks to my mom, I have this wonderful collection of letters I sent home during my three years of college. (I was an overachiever and crammed four years into three so that my sweetie and I could get married.) She gave me this packet last year and thought I would enjoy revisiting that period of my life.

I've learned much about myself. First, I thank God my parents had health insurance to cover me four hours away from home. I made several trips to the hospital ER in Evansville, Indiana, and that doesn't count all the accidents I had on campus that didn't require serious medical attention. Second, I thank God I lived on the same floor as a bunch of nursing students. I probably gave them a lot of practical practice.

A letter from January 1977 caught my attention. Walking back to the dorm, I slipped on ice, slide across the ice and hit my head on a glass and metal door. Unfortunately my hood flipped back and removed some cushion.

And that's why I say, if I knew then what I know now about brain injuries …

All the girls have been so sweet to me, even though I've tried to do stuff myself. They'll come up and ask, "Do you remember …" referring to things that had happened Sunday, and I don't recall half of it. I don't remember very clearly being carried out to the car by half a dozen people to go to the hospital. It was a Hughes Hall project. You would have had to see it to believe it.

My sense of balance has been off. I would tend to sway to one side and the person I was talking to would set me straight again. I nearly fell off one gal's bed when I drifted too far right before I realized what I was doing. It's one of the strangest things I've ever experienced. Everyone loved to hear me talk Sunday and Monday because they could barely understand me, and I sounded like a true drunk. But I'm on my way to recovery …

While working on a book about coping with brain injuries, I've learned that we've all got to take better care of our brains. Many people have been incapacitated for a long time or permanently, and even killed by blows to the head that seemed harmless or even funny to witness. I compared myself to a "true drunk."

Kids and adults bop each other on the head for fun or bang their heads against each other or something harder for sport. But the brain can only take so much bouncing around. Some skulls are literally thicker than others. Maybe mine is one of them … in more ways than one.

Think of actress Natasha Richardson earlier this year and her unexpected and tragic death from a bump on the head on the ski slopes. We can't make light of events like these.

Wear a helmet while on your bikes or motorcycles or skating or in unsteady activities like snow skiing. People who don't, they say it's their life, their choice.

Well, it's not just YOUR life. Picking you up off the pavement is not easy for the public servants who have to clean up the scene of the accident. Or if you survive and have permanent serious brain damage, what will happen to you? Or if you survive and look "just fine," the hidden damage may forever alter your personality and what makes you a special person to someone or many.

Yep, your choice.

And if I knew then what I know now about brain injuries, I would have been been a lot more careful with my one and only noggin and gotten myself a fashionable purple and white helmet to match my college colors.

What color is yours?

Sunday, July 26, 2009

The games people need to play

I'm so fortunate to receive another wonderful Alzheimer's story. However, the person who had this experience is the one truly blessed as she described the peculiar behavior of her husband who has Alzheimer's …

While he was shaving today he was looking at me with a stare that I knew something was going to be said. Out came the following - "What do you think this is? Do you think it is a game, young lady? That is it, you think it is a game and it isn't a game at all!" His words surprised me and I answered with, "Oh no this isn't a game! If it were a game it would be Gin Rummy or maybe even TAG (I moved close to him and tagged him)! As I was running away from his chair I was saying: "TAG, YOU ARE IT!"

I am smiling as I am typing to you. My little joke is only mine as he doesn't get it! HA! Such a waste of humor!

No, it's not a waste of humor! It saved your day and may have given you enough adrenaline to get through several days.

Have you ever looked at yourself in the mirror after you've had a good laugh? My cheeks always feel smoother after a laugh attack. It's probably because those muscles got an incredible workout.

And he knew shaving wasn't a game.

And he said something that made sense … to a certain degree.

And he called you "young lady"! What a compliment when you don't feel so young inside or out.

And you transformed yourself back to the glorious silliness of childhood! Tag and gin rummy! And you made him "it!"

Who cares if he got "it"! You did and that's all that matters. It's YOUR moment to remember.

Wednesday, July 22, 2009

When your loved one fires you

Imagine if your loved one "fired" you as their caregiver. That can be devastating or it can be humorous, depending on the circumstances. For an Alzheimer's caregiver, it could be just another day or something memorable.

A woman I've met through my experience writing about Alzheimer's sent me this wonderful interaction …

As I was getting him showered early this morning, he told me, "You sure don't know what you're doing, do you?" I told him, "Perhaps I could find someone to come to the house and bathe you?" His answer was, "Great! Get them over right away because you're horrible!!" I looked at this as a conversation, and the thought carried through three sentences - Yeah!

Yeah … it's the first REAL conversation he's had with her in a couple of months, though he had forgotten it as soon as the words sputtered from his lips. It does not take much to make a caregiver smile, even being told she's a lousy cleaner-upper.

Being fired is the nicest thing that's happened to this caregiver in a very long time. But she'll stick around because he's hired her again without an interview and will likely fire her many more times …

And what an amazing resumé she'll have.

Saturday, July 18, 2009

Walter Cronkite: A far greater man we've lost

It's too bad that so many Americans and reporters exhausted themselves during the recent Michael Jackson media "orgy." They're probably too tired to report on and read or care about the passing of a far greater man who influenced the lives of everyday Americans in so many ways.

Or perhaps they just don't get "it," what we've lost in THIS man, a real person worthy of our attention at his passing … to look at ourselves in the mirror.

Walter Cronkite was the symbol of the evening TV news of yesterday, a figure we trusted to tell us the truth. The truth, even if it wasn't pretty. The truth, even if wasn't glamorous. The truth, what we needed to make informed decisions about our destiny as individuals and as a nation. The truth … lacking more and more in the entertainment news many Americans consume as the extent of "news" they need to be informed citizens.

Walter Cronkite was the journalist I wanted to be, not Woodward and Bernstein for their Watergate reporting. He was synonymous with truth, integrity, accuracy, fairness, professionalism.

He was real. He was a man who exhibited character traits we should encourage our children, our young people to study and commit to heart … not song lyrics or dance steps.

We are probably not shocked by Walter Cronkite's passing as he was in his 90s and lived a long and amazing life. However, we should mourn that there will never be a father-figure like him again that encourages and impresses upon us the need to pay attention to the REAL news of our communities and our world, and to assume the responsibility to think for ourselves.

Yes, we've lost a far, far greater man … at the time our world needs so many more like him.

Thursday, July 16, 2009

Juggling too much

I have an appropriate confession for July 16, which is International Juggling Day: I'm juggling way too much in my life right now.

And I know I'm part of a huge majority of people nowadays.

So, that's why I haven't had time to add to my blog this week or Twitter. Time to put my ADDDDDDD+ mind into a focused orbit. And it's hard. Painfully hard. And it's annoying. Painfully annoying.

We all have levels we mark as being overwhelmed. What's demanding for one person may be a breeze for another. We're told to count our blessings when we see someone who is faced with more adverse challenges or tragedy. I try very hard to do that BUT I then feel guilty for feeling bad about anything not going perfect in my life or when my concerns seem pathetic in the scheme of the universe. It's an endless cycle …

We're also told to "snap out of it!" Didn't Cher slap Nicholas Cage in "Moonstruck" with that directive?

We all have limits but often never know until we reach them. I met an Alzheimer's caregiver whose loved one is declining rapidly. I listened to what was not said, the question that they can't bring themselves to say aloud: "Am I selfish if I'm reaching the point where I can't cope with daily care anymore?"

And this person is part of a silent majority that could be beaten down by this damn disease without support.

Yes, there is a point where charity and compassion demand too great a toll. Are we selfish when we no longer have the physical and emotional capability of daily care? Do other family members or friends or neighbors think we're lazy or unfeeling when our capacity to feel the blood flow through our veins weakens by the day from the stresses that drain us?

Let them walk in our well-worn shoes one month, one week, one day.

Whether we are devoured by caregiving duties or having extended ourselves too far because we don't know how to say no or yes, our pain is real. There are times to be persistent on our own and times to ask for help.

Don't think of it or call it a "pity party." Refer to it as a moment of reflection that is vital to our destiny, our basic survival.

Then we will more clearly see what we're really juggling.

Monday, July 6, 2009

My 30-year-old datebook

I've been consolidating a lot of paperwork, saving some of it digitally and recycling the paper. Among my boxes of goodies are most of the desk calendars I've filled since 1979, the year I got married. The pack rat in me just can't part with them completely, so I scanned them to revisit.

Yes, 1979 seems a long time ago. My entries start shortly after I graduated from college in May and returned home to Anderson, Indiana, to work and plan and pack until Roger and I got married July 21. His future employer, Caterpillar Tractor Co., back then, now Caterpillar Inc., helped us select that date because he started work in June as soon as he graduated, and we had to fit the wedding in during the company's traditional two-week July vacation. So, Saturday, the 21st, it was.

I worked at the daily newspaper at home while Roger started work and set up housekeeping in Peoria. I was watching every penny carefully as I found my detailed spending records jotted on the calendar pages. On June 1, I had two Cokes at 30 cents each, spent 88 cents on lunch and $1.35 on dinner. I really splurged the following day with 36 cents on a slush and $7 for a full tank of gas. On the 10th, I managed to get out of the grocery store and spend only $2.40.

On June 16, I boldly penned, "5 weeks!" until the big day. And then there's the phone number for some guy named Kevin … hmm …

I worked on a variety of stories for the newspaper that month, including a series on senior citizens with topics such as a senior center, an older adult conference and a session on death and dying. Ah, but there was also a lighthearted piece on musical gourds. Bigger hmm …

I drove to Peoria for a job interview on June 27 and got to see how Roger had decorated our new home. BIGGER hmm … And suddenly it was three weeks until this two-bedroom paradise was to be my address!

On July 1, I called hotels in Indianapolis to find a place for us to honeymoon for a few days. The Marriott was $49 for the first night, $25 the second night, and it included a champagne breakfast! Wow! Fancy stuff! Book it, Danno!

My last day of work was July 12, and I was busily filling in the back of the calendar that had space for budgeting and expenses. I was trying to be a responsible, yet frugal, bride. Monthly rent $245, electricity $25, annual renter's insurance $50. Cable TV? Where's a slot for that? Hmm …

I crossed out church donations and substituted cable.

My final days as a single woman all summed up neatly in an old calendar. What a sentimental hoot.

Now, if I could just remember who Kevin was … hmm … hmm …

Sunday, July 5, 2009

Wishing for a butter memory

Did you ever notice in a restaurant how pats of butter are usually wrapped individually in silver or gold foil when they're served with rolls or bread?

Sometimes they're solid from being refrigerated immediately before they're served, or they're kind of soft because they've been out for a while.

However you prefer yours, that shiny packaging often makes me think of fancy candy hidden inside, kind of tempting. Yes, it ruins many a diet because a lot of folks who use butter at the restaurant table wouldn't do the same at home. I guess there's something about unwrapping that glittery package that makes us crave it more.

Now, I know it's butter inside. You know it's butter inside. It's a condiment, not an item eaten solo, though I have known a few people that put on a slab of butter that's larger than the food it's decorating.

Imagine someone with Alzheimer's or dementia who sees that in the bread basket. This person can't read anymore and isn't communicating much verbally, so they're not going to ask what it is.

What do they see? What does shiny paper wrapped around something small represent? Could it be candy? It's got to be something special and sweet, like the precious and delicious treats of childhood … or any stage of our lives.

Why on earth am I even talking about this? Because I recently saw a person with Alzheimer's open one of those shiny pats of butter and roll it off the wrapper like it was candy and eat it.

What do you do? Nothing. If they thought it was candy, so what. Must have been okay because they didn't make a face. Do you scold them? Make a scene? Heavens no!

This is one of those moments in caregiving that you just let it slide … though you might subtly move the basket a little bit away. This is one of those moments that you will better comprehend what Alzheimer's has taken from your loved one: the memory of the difference between candy and butter in a shiny packet. Tuck this single image in a special place in your memory because it will make you smile one day, many days, when you need a lift the most.

Wednesday, July 1, 2009

Blame it on the brain #2

What was that word … yes, aphasia.

Imagine knowing exactly what you want to say and that's not what comes out of your mouth. Some folks who have had aphasia have described it like being in that Biblical Tower of Babel. After a stroke, brain injury or disease, some have difficulty understanding what others are saying and sometimes others don't understand what they're saying. It's truly like a foreign language that leaves you frustrated.

And it's frustrating for loved ones who have to train themselves to communicate differently. They need to adopt a new level of patience and compassion because it takes time to make sure they understand each other. And that's a little hard in this fast-paced world that has become quite addicted to instant gratification and instant answers.

I've learned much just by taking that vital time to simply listen to someone tell you what's on their mind. Many that I've communicated with apologize for their difficulty, but I tell them it's okay. I'm there to listen even if they can't express every word they want when they want.

Yes, you can blame it on the brain that has some wires crossed. But remember this: aphasia is not a lost of intellect. People with aphasia are not "stupid." They communicate at different levels and many improve by practice, practice, practice.

Practice the art of listening. You never know when it may open the door to the most extraordinary conversation of your life.