As my husband Roger and I have ridden the learning curve rollercoaster while caring for his dad, we've accepted one fact: Pepaw isn't so good with numbers anymore.
Thanks to Alzheimer's, Pepaw's checkbook was waaaaaayyyyy off by thousands of dollars, though luckily he had more than he thought. We were able to figure out his banking situation and narrow down his accounts to two financial institutions in Florida, where he had lived for 18 years.
We could tell him how much he had, but he vehemently disagreed as he pulled out a two-year old bank receipt showing a completely outdated figure. We thought he'd be happy to hear he had more than that old amount. Nope. Wouldn't accept our word so we gave up. Let him think what he wants.
However, we were confused when he kept talking about having some money in another bank that we hadn't heard of. Pepaw was adamant he had money in this other institution, but we found no statements or any documents of such a bank.
I kept trying to solve this mystery and finally figured it out the other day while reading online news.
Yep, Pepaw was right: his money was in the bank of Bernanke.
Federal Reserve Chairman Ben Bernanke.
Another thing off my to-do list!
Friday, June 18, 2010
Wednesday, June 16, 2010
She was still a caregiver
I came across something I had jotted January 7 of this year. Settling into my snowy, frigid car after leaving the hospital room of my dear friend, Molly, I remember the need to quickly transfer the emotions from my heart onto paper, to capture what I had just witnessed …
She watches and listens to the IV machine pump fluid into her body. Finally, she rests for a little while or at least closes her tired eyes, though you know her brain keeps pace with every rhythmic drop.
She's a caregiver, the spouse of an Alzheimer's patient who now resides in a care facility. His day-to-day care, though he is ambulatory, became too much for her and the family, and they made that difficult decision to place him in a nursing home.
Believe it or not, some people think she's NOT a caregiver anymore now that he is under the 24/7 eye of a facility. But she IS and will continue to be until he draws his last breath. She visits every day, makes sure his medical needs are met, sorts and makes sense of endless and redundant paperwork, and writes that expensive check every month for his care.
Most important, she loves him and shows him that every time she visits … whether she's laughs at his smile or cries in grief at his horrifyingly slow decline.
However, she's an exhausted caregiver, one whose own needs have gone unmet, albeit unintentionally, because she was consumed with worry and his care. She has a devoted family and circle of friends that have pitched in and assisted wherever possible …
My mini-essay ended there. I didn't finish it because Molly passed away two days later as she no longer had the energy to sustain her weakened body.
I can't believe Molly has been gone five months, exactly five months to the day on my birthday last week. My heart still aches at times missing our almost daily phone conversations. I know we'd be talking even more as I have now become an Alzheimer's caregiver for my dad-in-law, Pepaw.
But we wouldn't have depressed ourselves with talking Alzheimer's all the time. No, we would have laughed and talked about LIFE!
Oh, Molly, you would have loved Pepaw! You would have hit it off with this soft-spoken, sweet talkin' Tennessee native immediately! You would have engaged him in conversation just to hear his voice! And I would have smiled listening to the two of you yak the afternoon away …
Oh, Molly, what advice have you been whispering in my ear? Have I been paying attention?
I think it was your voice I heard two Sundays ago when I suddenly knew I HAD to take a day off, that my husband Roger needed to check on his dad and make sure he was eating properly. I had to give myself permission to take Alzheimer's off my to-do list for the day.
And I'm positive I heard it the other day when I checked on Pepaw after lunch. I thought he might want to leave his retirement center for a while and go shopping, but no, he said he was just going to watch TV for the afternoon. I asked if he was sure, and he reassured me with a smile that he was going to take it easy.
So I took it easy, too, and didn't feel guilty because Molly told me it was OK.
I cannot begin to compare what I have experienced in six weeks with what Molly experienced in six years, or what her incredible family continues to cope with today in caring for her beloved Joe.
But the most valuable lesson she taught me was to take care of yourself from the beginning … if YOU want to survive your loved one who has the Alzheimer's. That damn disease doesn't care who else it destroys in the process.
That's become my battle cry since Molly passed away, to educate every caregiver and family facing any catastrophic illness or injury, to pound these messages into them:
Take care of yourself!
Forgive yourself!
YOU cannot do everything yourself!
Nobody will do something as well or perfect as YOU, but it's OK to let them try!
Ask for help!
Accept help!
It's OK to be human!
It's OK to love yourself as much as your loved one!
That gives ME the energy for the coming days. That gives ME permission to be ME.
That's who Roger needs so WE can do this together.
That's who Pepaw needs.
That's who I need.
She watches and listens to the IV machine pump fluid into her body. Finally, she rests for a little while or at least closes her tired eyes, though you know her brain keeps pace with every rhythmic drop.
She's a caregiver, the spouse of an Alzheimer's patient who now resides in a care facility. His day-to-day care, though he is ambulatory, became too much for her and the family, and they made that difficult decision to place him in a nursing home.
Believe it or not, some people think she's NOT a caregiver anymore now that he is under the 24/7 eye of a facility. But she IS and will continue to be until he draws his last breath. She visits every day, makes sure his medical needs are met, sorts and makes sense of endless and redundant paperwork, and writes that expensive check every month for his care.
Most important, she loves him and shows him that every time she visits … whether she's laughs at his smile or cries in grief at his horrifyingly slow decline.
However, she's an exhausted caregiver, one whose own needs have gone unmet, albeit unintentionally, because she was consumed with worry and his care. She has a devoted family and circle of friends that have pitched in and assisted wherever possible …
My mini-essay ended there. I didn't finish it because Molly passed away two days later as she no longer had the energy to sustain her weakened body.
I can't believe Molly has been gone five months, exactly five months to the day on my birthday last week. My heart still aches at times missing our almost daily phone conversations. I know we'd be talking even more as I have now become an Alzheimer's caregiver for my dad-in-law, Pepaw.
But we wouldn't have depressed ourselves with talking Alzheimer's all the time. No, we would have laughed and talked about LIFE!
Oh, Molly, you would have loved Pepaw! You would have hit it off with this soft-spoken, sweet talkin' Tennessee native immediately! You would have engaged him in conversation just to hear his voice! And I would have smiled listening to the two of you yak the afternoon away …
Oh, Molly, what advice have you been whispering in my ear? Have I been paying attention?
I think it was your voice I heard two Sundays ago when I suddenly knew I HAD to take a day off, that my husband Roger needed to check on his dad and make sure he was eating properly. I had to give myself permission to take Alzheimer's off my to-do list for the day.
And I'm positive I heard it the other day when I checked on Pepaw after lunch. I thought he might want to leave his retirement center for a while and go shopping, but no, he said he was just going to watch TV for the afternoon. I asked if he was sure, and he reassured me with a smile that he was going to take it easy.
So I took it easy, too, and didn't feel guilty because Molly told me it was OK.
I cannot begin to compare what I have experienced in six weeks with what Molly experienced in six years, or what her incredible family continues to cope with today in caring for her beloved Joe.
But the most valuable lesson she taught me was to take care of yourself from the beginning … if YOU want to survive your loved one who has the Alzheimer's. That damn disease doesn't care who else it destroys in the process.
That's become my battle cry since Molly passed away, to educate every caregiver and family facing any catastrophic illness or injury, to pound these messages into them:
Take care of yourself!
Forgive yourself!
YOU cannot do everything yourself!
Nobody will do something as well or perfect as YOU, but it's OK to let them try!
Ask for help!
Accept help!
It's OK to be human!
It's OK to love yourself as much as your loved one!
That gives ME the energy for the coming days. That gives ME permission to be ME.
That's who Roger needs so WE can do this together.
That's who Pepaw needs.
That's who I need.
Friday, June 4, 2010
Learning to care for someone you really don't know
He was ALWAYS quiet. A long conversation with Pepaw was three minutes. The longest conversation I ever had with my father-in-law was nearly two decades ago when I tried to soothe things over when he disapproved of his youngest daughter's boyfriend.
That talk lasted MAYBE seven minutes. While we stood in his garage, it was the first time he had spoken about what he was FEELING. And I don't remember another "feeling" conversation before or after, even when my mom-in-law, Meemaw, died in 2000. He didn't even say much when he drove me to the airport the last time I visited them in Florida before she passed away. I had been crying all morning, knowing I'd never see her again, and I tried so hard to dry my tears. When he dropped me off and I told him I loved him, he smiled, hugged me and said, "It'll be all right, darling."
After my mom-in-law passed away, I tried for a couple of months to call him at least once a week, but it was a struggle to get more than five or six words out of him. There was always a lot of "dead air," and we all know how uncomfortable that can be. I kept reminding my husband Roger to call his dad to keep the communication going because I've learned that guys can "BS" their way through a conversation without saying much of anything … (And I say that with great love and admiration.)
So, I have to admit that I didn't see Pepaw much this past decade except for the trips I made down there to visit everyone in Roger's family. I couldn't stay overnight at his home because his smoking gave me even bigger migraines than when he and Meemaw used to smoke constantly. We still didn't say much, but on the way to a flea market one day, he told me, when I asked, how his breakfast as a child was a biscuit because his family was so poor …
For five weeks now, since he came to Peoria for us to care for him, I've been studying this man, my husband's father, my son's grandfather, Pepaw. Suddenly, I was responsible for much of his personal and financial care as we begin this journey through Alzheimer's together … and I really knew nothing about him.
I've interviewed probably thousands of people in my career as a journalist and author. But Pepaw … I didn't even know what questions to ask, so I had to observe his behavior and actions and listen when HE decided to speak. He lived in our home for about 10 days before we found a comfortable senior residence to give him his own place and get him around people after he had lived alone for a decade.
I discovered a man who didn't ask for ANYTHING. He thanked us for EVERYTHING, including the scrambled eggs and bacon Roger or I fixed him nearly every morning he was here, as he dutifully ate every bite in silence while reading the newspaper. I knew he wouldn't be talkative because he had eaten alone for years. I got past my distaste for the smell of coffee and made him a fresh cup or two every day. Add a sweet roll and he was in heaven as he softly said, "Thanks, darling."
Though he had packed two bags of his clothing, he said nothing when I didn't even open the smokey suitcases and left them in the garage to air out. He said, "Thanks, darling," as he accepted all new underwear, socks, T-shirts and jeans. We pried away a weathered jacket and let him wear my hooded sweatshirts. He wore those for the first four weeks because he wasn't used to the cold weather here … at least compared to Florida. And that's how he slept … in his clothes, and a hooded sweatshirt pulled up over his cap … not stirring all night long when I frequently checked on him.
I knew he was comfortable, and he didn't have to say a thing to teach me volumes about him.
Just by opening my eyes and heart, I learned that all he needed was someone to take care of him every day … without him ever having to ask or perhaps even fully comprehending — because of the Alzheimer's — that he needed assistance. I explained to two of my sisters-in-law that they shouldn't feel guilty about not recognizing his decline sooner, because Pepaw was always a man of few words and the guy who slept in his clothing for a couple of days. They would have had to spend 24/7 with him as Roger and I did for a couple of weeks to realize something was "not right" and exactly what was "wrong."
And that's how the evil of Alzheimer's infiltrates our lives … It steals our loved ones a tiny piece at a time, like pieces of puzzle that fall off the table and are devoured by dust bunnies and never seen again. We don't really see the missing parts until the whole picture comes clearer into focus …
Pardon me while I wipe my eyes … so I can better see what Pepaw needs today. A cup of coffee? A hug? Coming right up!
That talk lasted MAYBE seven minutes. While we stood in his garage, it was the first time he had spoken about what he was FEELING. And I don't remember another "feeling" conversation before or after, even when my mom-in-law, Meemaw, died in 2000. He didn't even say much when he drove me to the airport the last time I visited them in Florida before she passed away. I had been crying all morning, knowing I'd never see her again, and I tried so hard to dry my tears. When he dropped me off and I told him I loved him, he smiled, hugged me and said, "It'll be all right, darling."
After my mom-in-law passed away, I tried for a couple of months to call him at least once a week, but it was a struggle to get more than five or six words out of him. There was always a lot of "dead air," and we all know how uncomfortable that can be. I kept reminding my husband Roger to call his dad to keep the communication going because I've learned that guys can "BS" their way through a conversation without saying much of anything … (And I say that with great love and admiration.)
So, I have to admit that I didn't see Pepaw much this past decade except for the trips I made down there to visit everyone in Roger's family. I couldn't stay overnight at his home because his smoking gave me even bigger migraines than when he and Meemaw used to smoke constantly. We still didn't say much, but on the way to a flea market one day, he told me, when I asked, how his breakfast as a child was a biscuit because his family was so poor …
For five weeks now, since he came to Peoria for us to care for him, I've been studying this man, my husband's father, my son's grandfather, Pepaw. Suddenly, I was responsible for much of his personal and financial care as we begin this journey through Alzheimer's together … and I really knew nothing about him.
I've interviewed probably thousands of people in my career as a journalist and author. But Pepaw … I didn't even know what questions to ask, so I had to observe his behavior and actions and listen when HE decided to speak. He lived in our home for about 10 days before we found a comfortable senior residence to give him his own place and get him around people after he had lived alone for a decade.
I discovered a man who didn't ask for ANYTHING. He thanked us for EVERYTHING, including the scrambled eggs and bacon Roger or I fixed him nearly every morning he was here, as he dutifully ate every bite in silence while reading the newspaper. I knew he wouldn't be talkative because he had eaten alone for years. I got past my distaste for the smell of coffee and made him a fresh cup or two every day. Add a sweet roll and he was in heaven as he softly said, "Thanks, darling."
Though he had packed two bags of his clothing, he said nothing when I didn't even open the smokey suitcases and left them in the garage to air out. He said, "Thanks, darling," as he accepted all new underwear, socks, T-shirts and jeans. We pried away a weathered jacket and let him wear my hooded sweatshirts. He wore those for the first four weeks because he wasn't used to the cold weather here … at least compared to Florida. And that's how he slept … in his clothes, and a hooded sweatshirt pulled up over his cap … not stirring all night long when I frequently checked on him.
I knew he was comfortable, and he didn't have to say a thing to teach me volumes about him.
Just by opening my eyes and heart, I learned that all he needed was someone to take care of him every day … without him ever having to ask or perhaps even fully comprehending — because of the Alzheimer's — that he needed assistance. I explained to two of my sisters-in-law that they shouldn't feel guilty about not recognizing his decline sooner, because Pepaw was always a man of few words and the guy who slept in his clothing for a couple of days. They would have had to spend 24/7 with him as Roger and I did for a couple of weeks to realize something was "not right" and exactly what was "wrong."
And that's how the evil of Alzheimer's infiltrates our lives … It steals our loved ones a tiny piece at a time, like pieces of puzzle that fall off the table and are devoured by dust bunnies and never seen again. We don't really see the missing parts until the whole picture comes clearer into focus …
Pardon me while I wipe my eyes … so I can better see what Pepaw needs today. A cup of coffee? A hug? Coming right up!
Wednesday, May 26, 2010
Alzheimer's has knocked upon my door
I wished more than anything that I had been wrong, but I wasn't. I knew too much, but not nearly enough.
As my dad-in-law interacted with the geriatric team last week, my heart ached with every answer he uttered, and my brain quietly tallied his correct and incorrect responses. It took every reserve of energy within me to not jump up and shout, "You know this! C'mon, Pepaw! Get with the program! Prove me wrong!"
Please, please, prove me wrong …
Alzheimer's has knocked upon my door.
I had to let the diagnosis soak in, that Pepaw has Alzheimer's. I had to invite my husband Roger to lunch to tell him the results in person. I hated just saying, "Yes, it's Alzheimer's," over the phone. He knew the answer before he even scooted into the passenger seat of my car. Why else would I make that invitation on this particular day? We talked about it over lunch while it rained outside. Only once did he wipe his eyes and say, "Now, don't make me cry …"
Thankfully we smiled. It was all we could do. I think it was a smile of relief, that we had an answer, that we could prepare for the next question.
Of course, we'll likely never get THE answer to THE question: why?
Yes, Alzheimer's has knocked upon my door … my brain … my heart … my soul.
Everything I've witnessed and learned about Alzheimer's … everything I've written and presented to audiences about coping with this horrific disease … I have to believe it was God's way of preparing me for this day, this news, this journey.
I'm right here with you, Pepaw, ready to be your caregiver, a steady arm when you need it, a pair of eyes willing to look deep within yours when we speak … ready to be the girl you've always called Monty …
Ready to be your memory … no matter how hard Alzheimer's pounds upon our door.
Sunday, May 9, 2010
For Mother's Day, my husband gave me his dad
As Mother's Day 2010 dawns, I look over at my sleeping husband. He really outdid himself this year for my gift: he gave me his dad to help care for.
And I'm smiling because it's probably the best gift of love he's ever extended, other than bestowing the title of mother on me with our now 27-year-old son. Actually, having his dad live with us, because he could no longer live by himself 1,200 miles away, is a gift we've given each other. I'm not denying for a moment that it's been a huge adjustment in our lives to bring his dad here to Peoria.
Yet, without ceremony but with love, I've donned the title of "caregiver."
It's been about two weeks now that we've been responsible for meeting my dad-in-law's day-to-day needs. I've learned how to make coffee and endure an aroma I've never really cared for. I've learned how to finish the scrambled eggs just as the toast pops out of the toaster. I've learned how to time a meal just right based on when he says he's not hungry but 15 minutes later is.
I've learned how to find a new doctor and pull together enough of a health history so the friendly physician has a starting point. I've learned how to navigate medical insurance and question the medication he's been on. I've learned how to speak concisely and loudly as we await the arrival of the hearing aids that we thought we had packed.
I've learned my dad-in-law's strengths and weaknesses and how to work on each. I've learned the things I need to push and the things I need to allow him to do on his own schedule. I've learned more about him in two weeks than I have in the 31 years I've known him as the father of the man I love and married.
Part of me is relieved that we've now found a senior community for him to live just five minutes from us. He needs to socialize with people his own age to thrive, after he's lived alone 10 years since my mom-in-law passed away. We weighed the options carefully and knew we had to try this for HIS welfare.
Yet, a greater part of me is sad that the TV won't be blaring all the crime dramas several hours a day and he won't be shuffling out the door to smoke on the porch and thanking me with a warm smile when I check on him and he says, "I'm fine."
Oops, time to run! Got to get moving to make coffee and muffins for both my men.
Yes, for Mother's Day, my husband gave me a new and meaningful reason to get up every morning. I love you!
And I'm smiling because it's probably the best gift of love he's ever extended, other than bestowing the title of mother on me with our now 27-year-old son. Actually, having his dad live with us, because he could no longer live by himself 1,200 miles away, is a gift we've given each other. I'm not denying for a moment that it's been a huge adjustment in our lives to bring his dad here to Peoria.
Yet, without ceremony but with love, I've donned the title of "caregiver."
It's been about two weeks now that we've been responsible for meeting my dad-in-law's day-to-day needs. I've learned how to make coffee and endure an aroma I've never really cared for. I've learned how to finish the scrambled eggs just as the toast pops out of the toaster. I've learned how to time a meal just right based on when he says he's not hungry but 15 minutes later is.
I've learned how to find a new doctor and pull together enough of a health history so the friendly physician has a starting point. I've learned how to navigate medical insurance and question the medication he's been on. I've learned how to speak concisely and loudly as we await the arrival of the hearing aids that we thought we had packed.
I've learned my dad-in-law's strengths and weaknesses and how to work on each. I've learned the things I need to push and the things I need to allow him to do on his own schedule. I've learned more about him in two weeks than I have in the 31 years I've known him as the father of the man I love and married.
Part of me is relieved that we've now found a senior community for him to live just five minutes from us. He needs to socialize with people his own age to thrive, after he's lived alone 10 years since my mom-in-law passed away. We weighed the options carefully and knew we had to try this for HIS welfare.
Yet, a greater part of me is sad that the TV won't be blaring all the crime dramas several hours a day and he won't be shuffling out the door to smoke on the porch and thanking me with a warm smile when I check on him and he says, "I'm fine."
Oops, time to run! Got to get moving to make coffee and muffins for both my men.
Yes, for Mother's Day, my husband gave me a new and meaningful reason to get up every morning. I love you!
Wednesday, April 7, 2010
"You must write it in first person … your experience …"
The introduction to my new book that will be released this spring …
Why I Had to Write This Book
After Thanksgiving 2003, I sit at the coffee shop with my friend. While she sips a flavored brew, I nurse icy lemonade and stare at the piles of paper I had brought to share with her.
I called her because I’m frustrated, confused and tired. I can’t make sense out of hundreds of my handwritten and typed pages, and my mind swirls with enough words for a thousand sheets more.
However, more important, I can’t find my focus, voice, purpose in organizing and writing a book about the Holocaust and War Victims Tracing Center of the American Red Cross. It’s too emotional, I explain. I cannot write objectively about the Holocaust and its shocking history, the Red Cross program and all the individuals I have encountered. I confess that I have been changed by this process, and I continue to evolve. I believe that I am a better person because of this, and that’s why I’m writing this book.
After she challenges me to look deeper within myself for the answers, I cannot fend off the tears, which had been building within me for months as I have agonized over this project.
She pats my hand.
“I can go out and buy any book I want or need about the Holocaust. There’s a ton of them out there. How is your book different?”
No one had asked me that. Even I had not stopped long enough to pose that question. Before I can scribble or type one more word, I have to know and be confident of the answer or give it all up now.
I explain that it’s more than the Tracing Center or the Holocaust. It’s about the journey of so many lives, including my own, and the wobbly fence between humanity and inhumanity in this world.
She smiles.
“Then you must write it in first person … your experience …”
And I have.
It’s not always easy to accept new challenges that will potentially enhance our lives and to ignore those that do not carry us further along on this journey …
But I had to, and, more important, I wanted to.
Why I Had to Write This Book
After Thanksgiving 2003, I sit at the coffee shop with my friend. While she sips a flavored brew, I nurse icy lemonade and stare at the piles of paper I had brought to share with her.
I called her because I’m frustrated, confused and tired. I can’t make sense out of hundreds of my handwritten and typed pages, and my mind swirls with enough words for a thousand sheets more.
However, more important, I can’t find my focus, voice, purpose in organizing and writing a book about the Holocaust and War Victims Tracing Center of the American Red Cross. It’s too emotional, I explain. I cannot write objectively about the Holocaust and its shocking history, the Red Cross program and all the individuals I have encountered. I confess that I have been changed by this process, and I continue to evolve. I believe that I am a better person because of this, and that’s why I’m writing this book.
After she challenges me to look deeper within myself for the answers, I cannot fend off the tears, which had been building within me for months as I have agonized over this project.
She pats my hand.
“I can go out and buy any book I want or need about the Holocaust. There’s a ton of them out there. How is your book different?”
No one had asked me that. Even I had not stopped long enough to pose that question. Before I can scribble or type one more word, I have to know and be confident of the answer or give it all up now.
I explain that it’s more than the Tracing Center or the Holocaust. It’s about the journey of so many lives, including my own, and the wobbly fence between humanity and inhumanity in this world.
She smiles.
“Then you must write it in first person … your experience …”
And I have.
It’s not always easy to accept new challenges that will potentially enhance our lives and to ignore those that do not carry us further along on this journey …
But I had to, and, more important, I wanted to.
Sunday, April 4, 2010
The parade of holiday memories
He had no idea a holiday was on its way. Alzheimer's does that to a person, robs them of the history of holidays they had always enjoyed and celebrated.
A couple of months ago, I stopped by to visit a friend with Alzheimer's at the care facility where he now resides. He doesn't know me, but it doesn't matter. He didn't know me before he was diagnosed with Alzheimer's, so I certainly didn't expect him to remember me now. I was searching for a new way to engage him in conversation, something that would connect him with the world that still revolves around him.
"St. Valentine's Day is coming up," I said. His eyebrows arched as I continued. "Yes, all the hearts, bright red hearts, candy and flowers. I bet you used to buy your wife flowers for Valentine's Day because you loved her so much."
He smiled and nodded. "Yes, yes."
Hmm, I thought, why not march him through a parade of holidays and seasons.
"Then it will be spring. All the beautiful flowers will start to bloom. And then it will be Easter. Kids love to hunt for Easter eggs. And there was a song called 'Easter Parade.' " Well, he didn't break into song, but he was still maintaining eye contact.
"And then Memorial Day to remember the loved ones and the soldiers who have passed away. You were a sailor in World War II, weren't you?"
"Yes, I was." He sat a little straighter, and his grin widened.
"Yes, you were. And then it gets hot and it's summer. Whew! That old sun will be coming down. And then you know what's next?"
"What?" he asked.
"The 4th of July! A great time to sing patriotic songs." I can't sing, but that didn't keep me from starting a chorus of "I'm a yankee doodle dandy" to see what would happen.
We both smiled as he sang a couple of lines. Yep, those songs can remain deep within us even in the depths of Alzheimer's.
I continued the journey through the calendar … past Labor Day, fall, Thanksgiving and Christmas. I wish now that I had initiated another song for that day but knew his attention span might be coming to an end.
"Then it's Happy New Year! And last week, you know what happened?"
"What?"
"That ground hog saw his shadow, and we've got six more weeks of winter."
"He did?"
"Yep, he did."
He smiled and then looked at his surroundings again, the activity room where others sat, paced, talked or slept … each in their own world controlled by Alzheimer's.
If only we could read their minds. If we could only comprehend what they see and think. If we could only cure this damn disease.
Standing, I smiled and thanked him for allowing me to visit. He repeated "bye" when I said it. He remained in his seat as I walked down the hall.
We had taken a journey that required no transportation or luggage or tickets. In a few minutes, we had walked through a calendar year, a stroll that made him smile and sing a patriotic tune.
Yes, it was a very good year.
A couple of months ago, I stopped by to visit a friend with Alzheimer's at the care facility where he now resides. He doesn't know me, but it doesn't matter. He didn't know me before he was diagnosed with Alzheimer's, so I certainly didn't expect him to remember me now. I was searching for a new way to engage him in conversation, something that would connect him with the world that still revolves around him.
"St. Valentine's Day is coming up," I said. His eyebrows arched as I continued. "Yes, all the hearts, bright red hearts, candy and flowers. I bet you used to buy your wife flowers for Valentine's Day because you loved her so much."
He smiled and nodded. "Yes, yes."
Hmm, I thought, why not march him through a parade of holidays and seasons.
"Then it will be spring. All the beautiful flowers will start to bloom. And then it will be Easter. Kids love to hunt for Easter eggs. And there was a song called 'Easter Parade.' " Well, he didn't break into song, but he was still maintaining eye contact.
"And then Memorial Day to remember the loved ones and the soldiers who have passed away. You were a sailor in World War II, weren't you?"
"Yes, I was." He sat a little straighter, and his grin widened.
"Yes, you were. And then it gets hot and it's summer. Whew! That old sun will be coming down. And then you know what's next?"
"What?" he asked.
"The 4th of July! A great time to sing patriotic songs." I can't sing, but that didn't keep me from starting a chorus of "I'm a yankee doodle dandy" to see what would happen.
We both smiled as he sang a couple of lines. Yep, those songs can remain deep within us even in the depths of Alzheimer's.
I continued the journey through the calendar … past Labor Day, fall, Thanksgiving and Christmas. I wish now that I had initiated another song for that day but knew his attention span might be coming to an end.
"Then it's Happy New Year! And last week, you know what happened?"
"What?"
"That ground hog saw his shadow, and we've got six more weeks of winter."
"He did?"
"Yep, he did."
He smiled and then looked at his surroundings again, the activity room where others sat, paced, talked or slept … each in their own world controlled by Alzheimer's.
If only we could read their minds. If we could only comprehend what they see and think. If we could only cure this damn disease.
Standing, I smiled and thanked him for allowing me to visit. He repeated "bye" when I said it. He remained in his seat as I walked down the hall.
We had taken a journey that required no transportation or luggage or tickets. In a few minutes, we had walked through a calendar year, a stroll that made him smile and sing a patriotic tune.
Yes, it was a very good year.
Thursday, April 1, 2010
"It's a blessing"
As you get older and your circle of friends grows, you inevitably get more invitations … to visitations. That door opens wider and more frequently when you embrace a group of people with a fatal disease like Alzheimer's.
I attended the visitation yesterday for a sweet gentleman who passed away this week. I remember his smile at the support group meetings when he and his wife, his adoring and devoted caregiver, attended. When the caregivers got together separately, she'd describe the growing challenges, though never complained. Earlier in March, she grabbed our hearts as she wept and described how she had to place him in a care facility because she couldn't give him all the care he required as his disease progressed. Her children saw the toll it was taking on her and reassured her to not feel guilty.
"It was the hardest thing I've ever done," she confessed amid the tears. We listened and hugged her in hopes of giving her the strength to face the greatest challenge of not having him at home with her everyday, the man she had pledged to love, honor and cherish five decades ago.
She had not stepped away from nor forgotten that vow. She had embraced it with greater love and commitment to cherish both of their lives, to give him the 24-7 care he now needed against that relentless, brutal disease, and maintain her own health in the process. And there's not a selfish thing about that when it comes to Alzheimer's. I've watched first-hand it claim the life of one caregiver, and I never want to see that again. No family should have to experience that.
At the visitation, I arrived early and walked into the spacious sanctuary where the family organized itself into an official line, three generations alongside the open casket. When the wife saw me, she smiled and opened her arms to hug me so tight as I expressed my sympathy.
The three words she said with great love and conviction said it all:
"It's a blessing."
Her children echoed that sentiment, that he didn't have to suffer anymore, that they didn't have to watch him deteriorate further, that the faith he had instilled in them was helping carry them through this loss.
Is it inappropriate to say "It's a blessing" when someone passes away after a long illness or a sudden devastating accident? You never know just how fragile the family's emotions are, and you certainly don't want to cause them more grief when your heart has been breaking for them. As an outsider, it's easy to say, "It's a blessing." It's not your spouse, dad or grandpa. Life's experiences have taught me that you probably should keep that thought to yourself. It's best for the family to say that aloud for themselves on their own terms.
I made no apologies as I nodded when she said, "It's a blessing." They were all at peace, and I believe that makes the grief a little more tolerable, though never easy.
Alzheimer's had ravaged this gentle husband, father, grandfather and friend, and was moving on to another family ...
And tomorrow I have another visitation …
I attended the visitation yesterday for a sweet gentleman who passed away this week. I remember his smile at the support group meetings when he and his wife, his adoring and devoted caregiver, attended. When the caregivers got together separately, she'd describe the growing challenges, though never complained. Earlier in March, she grabbed our hearts as she wept and described how she had to place him in a care facility because she couldn't give him all the care he required as his disease progressed. Her children saw the toll it was taking on her and reassured her to not feel guilty.
"It was the hardest thing I've ever done," she confessed amid the tears. We listened and hugged her in hopes of giving her the strength to face the greatest challenge of not having him at home with her everyday, the man she had pledged to love, honor and cherish five decades ago.
She had not stepped away from nor forgotten that vow. She had embraced it with greater love and commitment to cherish both of their lives, to give him the 24-7 care he now needed against that relentless, brutal disease, and maintain her own health in the process. And there's not a selfish thing about that when it comes to Alzheimer's. I've watched first-hand it claim the life of one caregiver, and I never want to see that again. No family should have to experience that.
At the visitation, I arrived early and walked into the spacious sanctuary where the family organized itself into an official line, three generations alongside the open casket. When the wife saw me, she smiled and opened her arms to hug me so tight as I expressed my sympathy.
The three words she said with great love and conviction said it all:
"It's a blessing."
Her children echoed that sentiment, that he didn't have to suffer anymore, that they didn't have to watch him deteriorate further, that the faith he had instilled in them was helping carry them through this loss.
Is it inappropriate to say "It's a blessing" when someone passes away after a long illness or a sudden devastating accident? You never know just how fragile the family's emotions are, and you certainly don't want to cause them more grief when your heart has been breaking for them. As an outsider, it's easy to say, "It's a blessing." It's not your spouse, dad or grandpa. Life's experiences have taught me that you probably should keep that thought to yourself. It's best for the family to say that aloud for themselves on their own terms.
I made no apologies as I nodded when she said, "It's a blessing." They were all at peace, and I believe that makes the grief a little more tolerable, though never easy.
Alzheimer's had ravaged this gentle husband, father, grandfather and friend, and was moving on to another family ...
And tomorrow I have another visitation …
Friday, March 26, 2010
Alzheimer's: Bowling me over with memories
I have a permanent date on my calendar, and it takes a mighty big invitation to make me break it. The gathering at the local Alzheimer's Association office on the fourth Thursday of the month at 4 p.m. is very high on my life's priority list because I spend that 90 minutes with folks I have come to love, those who have Alzheimer's or dementia and their caregivers.
It's informal and fun, this monthly session in which we play games, talk and mostly laugh. Sometimes we go around the circle and answer questions that stir memories and prompt giggles and grins. This week it was indoor bowling, and I helped out as a pin girl, straightening and replacing those big white statues with the big red bow-ties and rolling the ball back to the next bowler.
I definitely exercised my body and mind as I laughed and cheered with everyone else and learned not to groan too loudly when there was a gutter ball. The Alzheimer's staff coordinator said we needed to form a bowling team and get shirts and everything. Now that would be a beautiful sight to see.
As I watched the ball roll over and over, I thought of a couple who would have loved today's activity and probably have laughed the loudest, Molly, my dear friend who recently passed away, and her husband Joe, who has Alzheimer's. I remember the story she told me about their first date. Joe invited her out to a bowling banquet, and it wasn't until Joe kept racking up award after award that Molly realized that he was one of the best bowlers in town, if not the region.
Ah, what a girl does for love! She knew nothing about bowling and immediately enlisted the help of family and friends to teach her the game. And she learned her lessons well, as a teacher often does. Did he ask her to marry him because she acquired this new skill? I think it was probably more than that, but she made this sacrifice to please the man she loved.
And she continued to do that throughout their married life, more than 40 years, to love, honor and cherish the man who loved, honored and cherished her. It was that same devotion that carried her as an Alzheimer's caregiver for several years until her body simply wore out. Talk about sacrifice. There's none greater.
Part of me wants to weep in sadness for missing my friend, but a bigger part of me suddenly laughs as I swear I can hear the big pins crashing in heaven as Molly continues to perfect her technique … as she patiently awaits Joe to join her when Alzheimer's is done with him.
It's informal and fun, this monthly session in which we play games, talk and mostly laugh. Sometimes we go around the circle and answer questions that stir memories and prompt giggles and grins. This week it was indoor bowling, and I helped out as a pin girl, straightening and replacing those big white statues with the big red bow-ties and rolling the ball back to the next bowler.
I definitely exercised my body and mind as I laughed and cheered with everyone else and learned not to groan too loudly when there was a gutter ball. The Alzheimer's staff coordinator said we needed to form a bowling team and get shirts and everything. Now that would be a beautiful sight to see.
As I watched the ball roll over and over, I thought of a couple who would have loved today's activity and probably have laughed the loudest, Molly, my dear friend who recently passed away, and her husband Joe, who has Alzheimer's. I remember the story she told me about their first date. Joe invited her out to a bowling banquet, and it wasn't until Joe kept racking up award after award that Molly realized that he was one of the best bowlers in town, if not the region.
Ah, what a girl does for love! She knew nothing about bowling and immediately enlisted the help of family and friends to teach her the game. And she learned her lessons well, as a teacher often does. Did he ask her to marry him because she acquired this new skill? I think it was probably more than that, but she made this sacrifice to please the man she loved.
And she continued to do that throughout their married life, more than 40 years, to love, honor and cherish the man who loved, honored and cherished her. It was that same devotion that carried her as an Alzheimer's caregiver for several years until her body simply wore out. Talk about sacrifice. There's none greater.
Part of me wants to weep in sadness for missing my friend, but a bigger part of me suddenly laughs as I swear I can hear the big pins crashing in heaven as Molly continues to perfect her technique … as she patiently awaits Joe to join her when Alzheimer's is done with him.
Friday, March 5, 2010
Dear President Obama and Congress … a word about Alzheimer's and more
Dear President Obama and Congress,
I wanted to let you know that I'm going to be in Washington, D.C., in a few days as part of the Alzheimer's Advocacy Forum sponsored by the Alzheimer's Association. I'll be there to champion the need for more awareness, research and funding to combat what is being forecast as a "silver tsunami" as the wave of Alzheimer's reaches into more and more American families.
I understand you all have a lot on your plate, and everybody is always wanting something from you. There are many important needs and causes in our country and society, many of which I support, because we are a nation of diverse needs. After all, each of us is a unique human being.
However, this is one "cause" you cannot afford to ignore. Alzheimer's is bankrupting our families financially, emotionally, physically and spiritually. Whatever direction our families go, so goes our nation.
Caregiving as a whole is depleting the energy and soul of millions of families, whether tending to the intense daily needs of loved ones with Alzheimer's, stroke and brain injury survivors, and individuals with other catastrophic injuries and illnesses. I've talked to many individuals and families, I've witnessed their struggles and successes, I've cried with them.
I watched the ordeal of caregiving steal the health and life of my dear friend Molly, a devoted and loving caregiver to her husband Joe, who has Alzheimer's and still doesn't understand that this damned disease basically took her life before it takes his. It's been almost two months since she left us, and all I wanted today was to hear her voice answer the phone with laughter and say "Hello Munchkin!"
What am I asking of you, our nation's leaders? Don't cry for me. Put more thought into this country's priorities. Consider more carefully how you spend our money. If you'd only stop wasting precious dollars on politics, political egos and favors, unnecessary trips, meaningless projects, special interests, inflated and useless jobs, corruption and greed, pompous and arrogant attitudes … and I don't have the time, space or patience to continue the list that grows longer every day with waste … just imagine the possibilities and hope that will stand proudly and glow even brighter in the limelight.
As the waves of this "silver tsunami" continue to escalate, you have the chance NOW to commit the necessary funds and best scientific minds in the world to battle this horrific disease. And what we will learn about the brain and body in the process will save far more lives in the future, including our fighting men and women when they suffer a brain injury in protecting this nation.
Am I selfish for asking you for common sense, commitment and compassion? No. I won't apologize for wanting a better world, and an end to the curse of Alzheimer's and other injuries and illnesses that break our hearts and spirit every day.
Remember, this is YOUR family's future, too.
Sincerely,
Monica Vest Wheeler
I wanted to let you know that I'm going to be in Washington, D.C., in a few days as part of the Alzheimer's Advocacy Forum sponsored by the Alzheimer's Association. I'll be there to champion the need for more awareness, research and funding to combat what is being forecast as a "silver tsunami" as the wave of Alzheimer's reaches into more and more American families.
I understand you all have a lot on your plate, and everybody is always wanting something from you. There are many important needs and causes in our country and society, many of which I support, because we are a nation of diverse needs. After all, each of us is a unique human being.
However, this is one "cause" you cannot afford to ignore. Alzheimer's is bankrupting our families financially, emotionally, physically and spiritually. Whatever direction our families go, so goes our nation.
Caregiving as a whole is depleting the energy and soul of millions of families, whether tending to the intense daily needs of loved ones with Alzheimer's, stroke and brain injury survivors, and individuals with other catastrophic injuries and illnesses. I've talked to many individuals and families, I've witnessed their struggles and successes, I've cried with them.
I watched the ordeal of caregiving steal the health and life of my dear friend Molly, a devoted and loving caregiver to her husband Joe, who has Alzheimer's and still doesn't understand that this damned disease basically took her life before it takes his. It's been almost two months since she left us, and all I wanted today was to hear her voice answer the phone with laughter and say "Hello Munchkin!"
What am I asking of you, our nation's leaders? Don't cry for me. Put more thought into this country's priorities. Consider more carefully how you spend our money. If you'd only stop wasting precious dollars on politics, political egos and favors, unnecessary trips, meaningless projects, special interests, inflated and useless jobs, corruption and greed, pompous and arrogant attitudes … and I don't have the time, space or patience to continue the list that grows longer every day with waste … just imagine the possibilities and hope that will stand proudly and glow even brighter in the limelight.
As the waves of this "silver tsunami" continue to escalate, you have the chance NOW to commit the necessary funds and best scientific minds in the world to battle this horrific disease. And what we will learn about the brain and body in the process will save far more lives in the future, including our fighting men and women when they suffer a brain injury in protecting this nation.
Am I selfish for asking you for common sense, commitment and compassion? No. I won't apologize for wanting a better world, and an end to the curse of Alzheimer's and other injuries and illnesses that break our hearts and spirit every day.
Remember, this is YOUR family's future, too.
Sincerely,
Monica Vest Wheeler
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