A brain injury caregiver who shared her free time with me

I am deeply humbled that a full-time caregiver gave ME an hour and half of her precious free time Friday to talk about three of the greatest joys of her life: her son, caregiving and educating the world about brain injuries.

As I listened to the succinct, insightful and emotional words of Jenny Carter of Dallas, Texas, I was immediately captivated by her honesty to literally tell it like it is when it comes to the five years she has been a full-time caregiver to her son, Sean, who suffered extensive injuries in a 2005 auto accident at age 22. The most serious long-term evidence of the accident has been a traumatic brain injury, which has robbed him of the ability to walk and talk and placed other limitations on his physical body.

Ah, but not his mind, which is sharp and full of the same kind of witty and uproarious comments from a 20-something modern male. I know the vocabulary and style well: my own son is 28. The only difference is that Sean spouts all that with his communication board.

Jenny taught me more in that 90 minutes than college students can learn in years of pursuit of a degree. What many people do not realize is that something like a brain injury or stroke is an immediate life-altering situation. "Normal" ceases in that moment. That's it. There's no cure. There is only endless hard work and an ongoing hope for continued recovery, to reclaim portions of a life lost to a cruel injury that lies hidden from our view. And nobody knows what the future will bring.

Despite the initial heartbreak and daily challenges, Jenny and Sean have this amazing attitude: they live life. They absolutely refuse to wallow in self-pity and lamenting what might have been. Though she readily admits it's still an adjustment at times and there are always going to be some tough days, they've learned to move beyond the tragedy and truly appreciate life. The mom brought her three sons up to choose to be happy, and she and Sean have embraced that philosophy with even greater fervor.

And it shows in their radiant smiles, their shining eyes, and how they get out into the world and refuse to hide away. Yes, they're serious about warning of the dangers of drinking and driving, but they're even more determined to not let life pass them by.

My conversation with Jenny reinforces what I have learned about coping with strokes and brain injuries: attitude is 90 percent. Those survivors and caregivers who have chosen to focus on the positive, the possibilities and the gift of life itself are the ones who continuously make gains emotionally, physically and spiritually. Those who have faith and believe in something bigger than themselves also excel in everyday life and surround themselves with people they inspire and lift in unique ways.

What wonderful lessons for each of us, how we attract what we radiate. Bad things happen, but we human beings have been blessed with a capability to reach within and without to touch and enrich other lives … whether we're the ones lending or accepting hands of help.

What awesome powers we possess! What awesome people we can welcome into our lives! What awesome strides we can make when we give ourselves permission to live!

And thank you, Jenny, for giving me one of the most precious gifts in this world: you.

Caregiving: The guilt was killing me!

Guilt is one of those power words that brings down governments and sends children into hiding.

No, I didn't commit a capital crime or break something. I just felt this overwhelming guilt for deciding to leave town for a couple of days to see family and friends and interview stroke survivors and caregivers. I felt guilty for being away from my dad-in-law for more than a day.

I've been with Pepaw almost every day for two months since we brought him here to live in Peoria so we could take care of him. I did take Monday and Wednesday off this week, and yet Thursday, as I picked him up from bowling and attended the Alzheimer's support group meeting with him, guilt began to sweep me for not being here for him this weekend.

Caregiver guilt: it's a killer.

I gave myself the same pep talk I give other caregivers when I speak to groups: you've got to take time for yourself or you're of no use to anyone.

The caregiver inside me shouted: what a crock of you-know-what! Shame on you for ABANDONING your father-in-law! Tsk tsk tsk!

I know I'm a Gemini, but these two voices were about to deafen me.

Here's the first debate:

• My husband will reassure me that NOBODY can take care of his dad as well as me. What a smart, smart man I married.

• But I have to let someone else fill in and learn the ropes of the everyday stuff. This is the weekend my son needs to have some one-on-one time with his grandpa so that Pepaw doesn't forget who he is.

Here's the second debate:

• I need to make sure he's out doing stuff HE wants to do every day.

• Hey, Pepaw is probably trying to find a polite way to say, "Hey, I need a vacation. I want to watch TV all day."

And there are a dozen more arguments that are trying to hold me captive.

I now realize the source of and solution to my guilt: love.

In two months, I've truly fallen in love with this man. I'm closer now to him than at any other time in the 36 years we've known each other, including the last 31 as his daughter-in-law. Sure, I'd given him hugs when we'd see each other after long separations and when it was time to say goodbye. Now I give him a hug every day I see him because he's become very special to me, more than just my dad-in-law.

I tell him every time I see him that I love him. And he tells me the same.

I care about his everyday life and want to be sure he eats properly and gets his medication. I've endured uncomfortable nights in a rocker-recliner so I could be close by during his first nights in new places, so that he wouldn't be confused or lost or unable to find his way to the bathroom at 3 a.m. I've helped him shower and made sure he had clean clothes. I've taken him to doctors' appointments and tried to ask all the right questions so he gets the best care. I've sat in bowling alleys and bought him cigarettes.

And just like every caring caregiver I've ever met, I do it because I love him. I want him to be happy, healthy, comfortable and pain-free. This is what we do for our loved ones. Hence, the name.

My guilt is now eased by the knowledge that I will come back after a few days away refreshed and more alert to meet his ongoing needs. That is how I will become a better caregiver by giving myself some care.

And by golly, I'm worth it! Pepaw tells me so!

"Grown" men need to cry, too

A woman described how her husband broke down sobbing after he discovered he could no longer change a tire … a skill that he had mastered years ago as part of the male ritual of learning to drive and routine car maintenance.

Yes, it's a "guy thing."

However, his expression of deep sadness is part of the grief process and accepting loss, and it's okay. He's a stroke survivor, and this is one of those "moments of truth" a survivor must face periodically and work through. It is also a reminder of just how amazing his progress has been since that horrifying day of his "brain attack," what skills and abilities he has reclaimed or reshaped to better fit his new life.

Whether it's a loss caused by a brain injury or a stroke, an individual must recognize new limits and opportunities. Is a woman no longer a "real woman" because she can't perform certain household duties that were once her domain? Is a man no longer a "real man" if he can't perform certain household duties that were once his domain … like change a tire? Absolutely not!

Bless the "grown" man who cries because he's administering a deep cleansing of his soul. He will see himself and the world clearer when his tears dry.

We need the losses to better understand and appreciate the wins. That's not only a valuable credo for survivors but for all of us. If we do not fail occasionally, we will not learn how to savor the true value of success. That's why survivors may need some extra encouragement at times to remind them they're only a few steps from the next achievement …

Like asking for help to change that tire.

How do you mend a broken heart?

It's a BeeGees' classic …

"How do you mend a broken heart?
How can you stop the rain from falling down?
How can you stop the sun from shining?
What makes the world go round …
Please help me mend my broken heart and let me live again."

You can't stop the rain. You can't stop the sun. Thank goodness! If human beings controlled the rain or the sun, we'd drown or burn. It's best to leave those things in the hands of a much wiser higher power.

How do YOU mend a broken heart? Not even the most skilled craftsman, surgeon or seamstress is up for that challenge. Mending a broken heart is an inside job accompanied by an abundance of love and understanding from those who surround us. Yes, we are the only ones who feel what we feel … The tears, anger, guilt, pride, stubbornness and grief, all focused and locked inside us, can impair our vision so much that we do not see what the exhausted or broken heart is doing to our bodies and minds and spirits.

Are you or do you know someone who is a caregiver to a loved one who has Alzheimer's, or has had a stroke, cancer or other catastrophic injury or illness? Have you lost someone you loved with all your heart? Has your heart been broken?

Are you afraid to say, admit, acknowledge or ask for help to "Please help me mend my broken heart and let me live again"?

Sometimes we do not know what is best for us when we are bogged down by the tears, anger, guilt, pride, stubbornness and grief. Sometimes we don't see what's happening to us when we look in the mirror. But others do and when they tell us what they see through their eyes of love, we don't want to hear or believe it.

We cannot make this journey of life alone or with only one person. We were created to be here for and to lift each other when we don't realize we need many spheres of companionship and love to fully experience life. There are more genuine open arms to embrace us and shoulders to cry on than you can begin to count.

No one will ever take the place of someone we love, whether they have been affected by a debilitating condition or have passed away. But we can be enriched more than we ever imagined by allowing a circle of friends, family and even strangers to each bring their own little repair kit to help put us back together again.

That's how you mend a broken heart because you can't do it alone. And those we lost and those we care for would certainly want us to live again.

Brain injuries: Best of intentions paved with pain

Her voice was soft, and I listened carefully. Her message was too important, and I didn't want to miss a word.

The woman was in an auto accident several years ago and sustained a brain injury that forced her to slow down. Her doctor told her she'd be walking again on her own within five or 10 years. She struggled with a walker and put all of her energy into learning how to walk but still had to rely on a wheelchair to get around most of the time.

Well-meaning friends thought she would be more "motivated" to walk if they took away her wheelchair and left her to move with only the walker.

She fell.

She fell again.

She fell again and again and again …

She thought her hip had broken on the last of eight falls. The doctors told her she didn't have one fracture: she had a half-dozen.

And modern technology finally revealed a spot on her brain stem from the accident that explained why she had not been able to walk. Add that to the destruction to her hip …

My heart simply broke as I fixated on her beautiful eyes.

I thanked her for sharing that difficult story. I told her it would help other people understand that what they consider "excuses"—depression, laziness, self-pity, or lack of motivation—that keep someone with a brain injury from making progress, can't be blamed. There are some injuries that can't repair themselves immediately or sometimes ever.

Yes, there are times and ways to challenge someone to improve … having them pick up something on a table to sharpen motor skills … letting the survivor keep trying to find the right word to make a request … but not removing a vital tool of their movement, something that keeps them as independent as they can be.

I asked if I could push her in her wheelchair out to where the bus with the lift waited to take her home. The sweetest smile and nod were a gentle and appreciative "yes." I told her I loved her "thumbs up" button she wore on her colorful holiday sweatshirt. She explained that it came from Disneyland where friends saw Mickey Mouse's familiar hand—the thumb and three fingers—giving this positive sign and immediately thought of her because that's who she is.

And the "thumbs up" she gave me in the chill of the night as I said good-bye was enough to warm my heart far beyond the distance I had to walk to my car.

I think I'll be carrying that around for a very long time.

'Tis the perfect season.

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?

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.

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 …

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?

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.

Planning the plan or living the life

It seems like life is all about planning.

Some of us plan the week's dinners, exactly what to pick up at the grocery store, our household chores, who's responsible for what in the family every day or week.

Some of us map out detailed work duties and meeting schedules.

Some of us create elaborate vacation and travel plans that outline where we're going to be every minute, every hour, every day.

We're constantly told to make plans for the future … plan for the kids' education, retirement, even our own funeral.

As a society, we're expected to plan, plan, plan, plan … And those who do not conform by planning are either considered a burden to the rest of us or are chastised or relegated to a lower rung in the ladder of the hierarchy of humankind.

Yes, we do need some plans or the universe would fall into chaos.

And those of us who do plan, plan, plan, plan keep going, going, going, going according to plan until … life doesn't go according to plan.

Is it any wonder why we endure a sudden shock to the system when that happens, when job loss, squabbles, accident, illness or death wields a pencil so big that it erases everything jotted in our daily planners or scribbled on the refrigerator to-do list. And we stare in dismay over what to write or do next.

How tolerable are we to the daily challenges of individuals who have no control over how their day is going to flow? That can and has happened to all of us at some time.

How we make plans to accomplish certain things or go places or meet people but injury or illness shuts us down for the day even before it's even begun?

I think of the many families who cope with a loved one's Alzheimer's, brain injury, stroke, brain tumor-brain cancer or other serious condition, who have the best of intentions to accomplish a lot today, but their loved one's injury or illness didn't get the memo. They had a good day yesterday, but today … sorry, it's not going to go according to plan.

There are the couples who plan to attend the support group meeting but don't show up. There are the families who plan to go to the special events and have made reservations, but they have to cancel. I attended a gathering where a stroke survivor and caregiver were unable to be there, and a hotel clerk seemed a little flustered that we had to rearrange a few things. I explained to that clerk that strokes can change plans. Period.

Sometimes bad things come along and other people are just going to have to understand.

Sometimes good things come along and other people are just going to have to understand.

And sometimes we must seize the unexpected good days to cancel the plan on paper and do something fun and memorable. And thank goodness when we do because that's a far greater accomplishment in life than anything on the official plan.

We plan for everything except the unplannable … hmm, my spellcheck didn't plan on that word in its dictionary.