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.
Friday, March 26, 2010
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
Thursday, February 18, 2010
Alzheimer's: Please don't pass the salt
I've heard a lot of touching and funny stories about Alzheimer's disease in the last few years. The following is among the most memorable.
A woman told me how her loved one with Alzheimer's seemed eager to help with dinner one night. On the stove was a pot of homemade spaghetti sauce that the primary chef had prepared. She instructed the person with Alzheimer's to simply keep stirring it while she stepped out of the kitchen momentarily.
Returning a few minutes later, the chef thanked the assistant who was still busy stirring. Everything was carried to the dining room table, and the family gathered for one of its favorite homestyle meals. Someone took the first bite of the sauce and started coughing. Yuck! What's wrong with this?!?!?
A quick investigation discovers that the temporary cook had innocently added her own special ingredient: an oversized pinch of epsom salt.
The lesson to be learned from this story?
Never leave someone with Alzheimer's unattended in the food preparation area for safety and to avoid the addition of too many pinches of anything. Your tongue, throat and stomach will thank you.
A woman told me how her loved one with Alzheimer's seemed eager to help with dinner one night. On the stove was a pot of homemade spaghetti sauce that the primary chef had prepared. She instructed the person with Alzheimer's to simply keep stirring it while she stepped out of the kitchen momentarily.
Returning a few minutes later, the chef thanked the assistant who was still busy stirring. Everything was carried to the dining room table, and the family gathered for one of its favorite homestyle meals. Someone took the first bite of the sauce and started coughing. Yuck! What's wrong with this?!?!?
A quick investigation discovers that the temporary cook had innocently added her own special ingredient: an oversized pinch of epsom salt.
The lesson to be learned from this story?
Never leave someone with Alzheimer's unattended in the food preparation area for safety and to avoid the addition of too many pinches of anything. Your tongue, throat and stomach will thank you.
Sunday, February 14, 2010
That Valentine's Day, our hearts were full
It was the simplest and perhaps truest form of love.
A memorable Valentine's Day was chaperoning my son, who was only 9 years old, when he went out with a girl he called his friend.
You can't get much more stereotypical than this: pizza and soda for dinner (just ice water for mom and dad who are watching their weight), and then a drive over to the ice cream shop for a scoop of anything but vanilla (low-cal frozen yogurt for the chaperones).
The little girl was quiet, her voice barely above a whisper when she talked to us. (Of course, they had chatted up a storm in the car.)
"What pizza topping do you want, hon?"
Whisper whisper whisper.
"I'm sorry, hon, which one do you want?"
We caught it this time.
"Pepperoni."
Her gentleman friend ordered the same pizza topping and soda before they scurried off to play on the video machine. That was a reassuring feeling, handing over $2 worth of quarters to the pair. At least that was still fun to do at this age.
My heart ached and laughed during the evening. In barely four months, my little boy would reach that hallmark of 10. He was sensitive yet caring, quiet yet the socialite, polite yet still a child. He was the blend of our hopes and dreams, and we knew the toughest days were still ahead.
The baby cheeks were long gone, replaced by a handsome young profile and just one dimple when he smiled. His glasses accentuated his vibrant eyes instead of masking them. His eyes were like mine, brighter green in the morning and a more tired shade as the day wore on. His father could always tell when we were tired, just by looking at the color chart in our eyes.
Our son had both of our curly eyelashes that his grandmothers envied. His pudgy little nose was a duplicate of mine, but the mouth was his father's, most often racing in the open gear. Except this night.
His voice was low and quiet, rid of the argumentative tone from the day before, but one I knew I'd hear again. His words were carefully chosen, nurtured, convincing. It was amazing what charm one little lady had over one little man, my little boy.
Then I studied this young lady who had spellbound him. She was quite pretty, dark eyes, a smooth thin face, three inches taller than her escort. But she was a year older.
Yes, my little boy had fallen for an older woman. He was quite taken by her. Notes from her were taped to his bedroom door. Her picture had a prominent spot in a small frame next to his bed. But if you called her his girlfriend, he quickly corrected you.
"She's a friend who's a girl."
Some of the kids teased him mercilessly about his “girlfriend.” It was painful, but I told him to ignore them. If she was just a friend, fine, then be friends and ignore what those other knuckleheads have to say. Of course, that's easier for a mother to say since it had been 23 years since she was that age.
I don't remember much about when I was nine or 10. I was too busy playing softball and basketball with the boys on the playground to pay much attention to nature’s gift or curse of puppy love. I could spar with the best of them throughout grade school and only gave it up in junior high because recess wasn't part of the curriculum.
But all my schooling had not prepared me for a night like this.
The simple act of liking someone was in its purest form this night. The deep-rooted feelings of love are wrapped up in innocence, before it becomes complicated and fragile. But at this age, it is in a delicate state, and warm fuzzies mean a lot. And the fear of rejection starts early.
What I was experiencing watching my young man in action put my feelings in a whole new dimension.
My baby was growing up. He was like a little man. And while I panicked inside of the prospects of him growing up, deeper inside me I felt a sense of relief, of comfort. He was well-mannered, considerate, fun-loving, a listener, a talker, a truly caring human being. Somehow it made me feel stronger and self-confident, that I was doing OK as a parent, as a human being.
It warmed my heart and made me chuckle as my husband and I walked behind them when we left the ice cream shop. They held hands as we walked in the darkness illuminated by the street lights and moonlight.
As we took her home, my son put his hand on his companion's back as if to protect her as he walked her to the door. He gave her a hug, and she thanked me before closing the door. It was short, sweet, nothing elaborate.
The night was a whirlwind that started with a discussion of homework and ended with a hug. As we drove home, we didn't say much. As my son and I unlocked the front door, he looked up at me beneath the floppy hood and orange stocking cap and said, "I hugged her, Mom."
"I know, honey," I said, as I drew him to me and felt the warmest I ever had in the February wind and rain.
"C'mon, mom," he said inside, leaving a trail of winter clothing behind him. "Let's sort through the Valentine's candy."
That Valentine's Day, our hearts were full.
A memorable Valentine's Day was chaperoning my son, who was only 9 years old, when he went out with a girl he called his friend.
You can't get much more stereotypical than this: pizza and soda for dinner (just ice water for mom and dad who are watching their weight), and then a drive over to the ice cream shop for a scoop of anything but vanilla (low-cal frozen yogurt for the chaperones).
The little girl was quiet, her voice barely above a whisper when she talked to us. (Of course, they had chatted up a storm in the car.)
"What pizza topping do you want, hon?"
Whisper whisper whisper.
"I'm sorry, hon, which one do you want?"
We caught it this time.
"Pepperoni."
Her gentleman friend ordered the same pizza topping and soda before they scurried off to play on the video machine. That was a reassuring feeling, handing over $2 worth of quarters to the pair. At least that was still fun to do at this age.
My heart ached and laughed during the evening. In barely four months, my little boy would reach that hallmark of 10. He was sensitive yet caring, quiet yet the socialite, polite yet still a child. He was the blend of our hopes and dreams, and we knew the toughest days were still ahead.
The baby cheeks were long gone, replaced by a handsome young profile and just one dimple when he smiled. His glasses accentuated his vibrant eyes instead of masking them. His eyes were like mine, brighter green in the morning and a more tired shade as the day wore on. His father could always tell when we were tired, just by looking at the color chart in our eyes.
Our son had both of our curly eyelashes that his grandmothers envied. His pudgy little nose was a duplicate of mine, but the mouth was his father's, most often racing in the open gear. Except this night.
His voice was low and quiet, rid of the argumentative tone from the day before, but one I knew I'd hear again. His words were carefully chosen, nurtured, convincing. It was amazing what charm one little lady had over one little man, my little boy.
Then I studied this young lady who had spellbound him. She was quite pretty, dark eyes, a smooth thin face, three inches taller than her escort. But she was a year older.
Yes, my little boy had fallen for an older woman. He was quite taken by her. Notes from her were taped to his bedroom door. Her picture had a prominent spot in a small frame next to his bed. But if you called her his girlfriend, he quickly corrected you.
"She's a friend who's a girl."
Some of the kids teased him mercilessly about his “girlfriend.” It was painful, but I told him to ignore them. If she was just a friend, fine, then be friends and ignore what those other knuckleheads have to say. Of course, that's easier for a mother to say since it had been 23 years since she was that age.
I don't remember much about when I was nine or 10. I was too busy playing softball and basketball with the boys on the playground to pay much attention to nature’s gift or curse of puppy love. I could spar with the best of them throughout grade school and only gave it up in junior high because recess wasn't part of the curriculum.
But all my schooling had not prepared me for a night like this.
The simple act of liking someone was in its purest form this night. The deep-rooted feelings of love are wrapped up in innocence, before it becomes complicated and fragile. But at this age, it is in a delicate state, and warm fuzzies mean a lot. And the fear of rejection starts early.
What I was experiencing watching my young man in action put my feelings in a whole new dimension.
My baby was growing up. He was like a little man. And while I panicked inside of the prospects of him growing up, deeper inside me I felt a sense of relief, of comfort. He was well-mannered, considerate, fun-loving, a listener, a talker, a truly caring human being. Somehow it made me feel stronger and self-confident, that I was doing OK as a parent, as a human being.
It warmed my heart and made me chuckle as my husband and I walked behind them when we left the ice cream shop. They held hands as we walked in the darkness illuminated by the street lights and moonlight.
As we took her home, my son put his hand on his companion's back as if to protect her as he walked her to the door. He gave her a hug, and she thanked me before closing the door. It was short, sweet, nothing elaborate.
The night was a whirlwind that started with a discussion of homework and ended with a hug. As we drove home, we didn't say much. As my son and I unlocked the front door, he looked up at me beneath the floppy hood and orange stocking cap and said, "I hugged her, Mom."
"I know, honey," I said, as I drew him to me and felt the warmest I ever had in the February wind and rain.
"C'mon, mom," he said inside, leaving a trail of winter clothing behind him. "Let's sort through the Valentine's candy."
That Valentine's Day, our hearts were full.
Friday, February 12, 2010
Flying high on Valentine's Day
I spent most of the night of Saturday, February 12, 2000, on the phone making airline reservations for two days later. Roger and I hadn’t been to the Sunshine State together in nearly seven years. We enjoyed visiting his family at different times, and I still joke that that’s the secret of our marriage: separate vacations. His siblings and parents had probably forgotten what we looked like as a couple.
We had never jumped on a plane for a quick getaway. Now we could, since our almost 18-year-old son was old enough to stay home to take care of the cats and the house and get himself to school without us nagging. Our newly discovered independence was exhilarating.
In anticipation of the trip, I focused on my work all day Sunday and Monday morning, making sure I had finished everything for clients before my week’s absence. Roger ran errands while I made phone calls. As I shut down my computer, he startled me.
“Happy Valentine’s Day,” he said.
I turned to see his familiar smile hidden behind this huge, colorful bouquet. The flowers were gorgeous. Their natural perfume permeated the air. I shook my head.
“Why did you do that? We’re going to be on an airplane today!”
He reminded me that it was Valentine’s Day and that he loved me. In that instant, I felt smaller than my five-foot-one-and-a-half inches. I apologized at my outburst and hugged him. I knew in that moment that I was the luckiest and most-loved woman in the world, all because he had remembered it was Valentine’s Day.
Nobody would keep me from embracing these flowers as I walked through the airport and carried them on board, ready to hold them for more than 1,000 miles. A flight attendant smiled and asked who had given me this brightly colored ensemble of Mother Nature’s finest.
“My husband.” I gestured to Roger ahead of me as we wriggled down the narrow aisle. “He remembered to get me flowers for Valentine’s Day even though his mother just died. We’re on our way to her funeral.”
No mistaking the sudden glisten in her eyes.
“He sounds like an incredible man.”
Yes, he definitely is.
We had never jumped on a plane for a quick getaway. Now we could, since our almost 18-year-old son was old enough to stay home to take care of the cats and the house and get himself to school without us nagging. Our newly discovered independence was exhilarating.
In anticipation of the trip, I focused on my work all day Sunday and Monday morning, making sure I had finished everything for clients before my week’s absence. Roger ran errands while I made phone calls. As I shut down my computer, he startled me.
“Happy Valentine’s Day,” he said.
I turned to see his familiar smile hidden behind this huge, colorful bouquet. The flowers were gorgeous. Their natural perfume permeated the air. I shook my head.
“Why did you do that? We’re going to be on an airplane today!”
He reminded me that it was Valentine’s Day and that he loved me. In that instant, I felt smaller than my five-foot-one-and-a-half inches. I apologized at my outburst and hugged him. I knew in that moment that I was the luckiest and most-loved woman in the world, all because he had remembered it was Valentine’s Day.
Nobody would keep me from embracing these flowers as I walked through the airport and carried them on board, ready to hold them for more than 1,000 miles. A flight attendant smiled and asked who had given me this brightly colored ensemble of Mother Nature’s finest.
“My husband.” I gestured to Roger ahead of me as we wriggled down the narrow aisle. “He remembered to get me flowers for Valentine’s Day even though his mother just died. We’re on our way to her funeral.”
No mistaking the sudden glisten in her eyes.
“He sounds like an incredible man.”
Yes, he definitely is.
Thursday, February 11, 2010
"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.
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.
Saturday, January 30, 2010
The truth and Alzheimer's
I met someone the other day whose grandma has Alzheimer's. Sometimes Grandma inquires about her late husband. Most family members tell her that he's in heaven.
Should you always tell the truth to someone with Alzheimer's?
I honestly have to say no.
Will it help? Will it hurt? You never know because the person with Alzheimer's could respond a different way every time to the same bit of information.
Here's a story from my book on Alzheimer's that is a prime example of when you should NOT tell the truth:
A few weeks before completing this book, I attended the funeral of one of the clients from the Alzheimer's support group. Cancer had claimed Ed, who also had stroke-related dementia. A few days earlier, his wife, Shirley, had attended the monthly dinner gathering of the support group members. I asked about Ed, and she said he was home under hospice care, and that her children had told her to get out of the house for awhile to see her friends.
I asked Shirley how she was coping. It had been difficult, but she told me that the dementia had been a blessing in a way. I remembered one of the sessions when Shirley described Ed’s reaction to finding out that his cancer had worsened. Then the dementia made him forget. When he heard again later about his cancer, it was like hearing it for the first time, and the family decided not to mention it again in front of him, to not put him through that emotional distress again.
Later that night after Shirley and I talked, Ed passed away with family gathered …
Hard news, tragic news, old news … don't keep repeating it. How would you like to hear that your spouse had died as if you were hearing it for the first time again and again and again because you couldn't remember? Or that you have cancer? Even if you forget, it's still tears you up inside every time like the first time.
Really, what's the harm in just saying, "He's at work" or "She'll be back in a little bit" or "You're doing fine." You're not being deceitful. You're being compassionate.
Sometimes that's the greatest gift you can give to a loved one with Alzheimer's … honest.
Should you always tell the truth to someone with Alzheimer's?
I honestly have to say no.
Will it help? Will it hurt? You never know because the person with Alzheimer's could respond a different way every time to the same bit of information.
Here's a story from my book on Alzheimer's that is a prime example of when you should NOT tell the truth:
A few weeks before completing this book, I attended the funeral of one of the clients from the Alzheimer's support group. Cancer had claimed Ed, who also had stroke-related dementia. A few days earlier, his wife, Shirley, had attended the monthly dinner gathering of the support group members. I asked about Ed, and she said he was home under hospice care, and that her children had told her to get out of the house for awhile to see her friends.
I asked Shirley how she was coping. It had been difficult, but she told me that the dementia had been a blessing in a way. I remembered one of the sessions when Shirley described Ed’s reaction to finding out that his cancer had worsened. Then the dementia made him forget. When he heard again later about his cancer, it was like hearing it for the first time, and the family decided not to mention it again in front of him, to not put him through that emotional distress again.
Later that night after Shirley and I talked, Ed passed away with family gathered …
Hard news, tragic news, old news … don't keep repeating it. How would you like to hear that your spouse had died as if you were hearing it for the first time again and again and again because you couldn't remember? Or that you have cancer? Even if you forget, it's still tears you up inside every time like the first time.
Really, what's the harm in just saying, "He's at work" or "She'll be back in a little bit" or "You're doing fine." You're not being deceitful. You're being compassionate.
Sometimes that's the greatest gift you can give to a loved one with Alzheimer's … honest.
Thursday, January 28, 2010
Alzheimer's: The wayward banana peel
We all miss the trash can now and then when our basketball skills get a little rusty. Or sometimes we're a bit lazy and don't feel like bending down to collect what has fallen behind or around the circular file, especially when nobody's looking.
Yes, I confess. I've done it.
However, someone with Alzheimer's may forget where the garbage can is … or only remember where it was kept years earlier as recent memory fades … or as the disease progresses, may not understand the purpose of the trash container. Caregivers or others may find some unexpected surprises. One wife notes:
Found a banana peel strewn under the sink … not where the garbage receptacle is kept. Oh, shoot, now there is something else I have to keep my eyes open for … garbage.
Where's your garbage can now? Is it in a different place than it was five or even 10 years ago? Where was it kept when the person with Alzheimer's was growing up? I don't, but a lot of people keep their can out of sight under the sink.
Alzheimer's steals the habits of our lives, the things we do automatically without thinking, and jumbles them. That's why caregivers often tell me how they find garbage or dirty dishes in the cabinets and the good and valuable stuff in the trash.
Now you know just one of the countless reasons why caregiving is a 24/7 job.
Yes, I confess. I've done it.
However, someone with Alzheimer's may forget where the garbage can is … or only remember where it was kept years earlier as recent memory fades … or as the disease progresses, may not understand the purpose of the trash container. Caregivers or others may find some unexpected surprises. One wife notes:
Found a banana peel strewn under the sink … not where the garbage receptacle is kept. Oh, shoot, now there is something else I have to keep my eyes open for … garbage.
Where's your garbage can now? Is it in a different place than it was five or even 10 years ago? Where was it kept when the person with Alzheimer's was growing up? I don't, but a lot of people keep their can out of sight under the sink.
Alzheimer's steals the habits of our lives, the things we do automatically without thinking, and jumbles them. That's why caregivers often tell me how they find garbage or dirty dishes in the cabinets and the good and valuable stuff in the trash.
Now you know just one of the countless reasons why caregiving is a 24/7 job.
Tuesday, January 26, 2010
Alzheimer's: "Isn't it time to go home?"
While visiting a friend in the Alzheimer's wing of a nursing home, I spent much of the time observing and trying to make sense of a disease that makes no sense. My friend doesn't talk much these days, and any conversation really doesn't make much sense. But that's okay because we were interacting and keeping him connected with the world around him … which is this corridor of rooms.
He was in a pretty good mood today, smiling and laughing. He shook his head at the man who continued to get out of his wheelchair, setting off the alarm countless times. The bell didn't phase my friend or any of the others who sat or walked. I knew I'd go mad if I had to listen to it for very long.
One woman mumbled that "It's okay if you want to talk about me" and walked away.
Another woman fretted about her babies, hoping they weren't sitting out in the cold and snow. She asked no one in particular if her babies had been fed.
"Isn't it time to go home?" she asked one of the staff.
"No, not yet," the staff member replied gently.
"Well, when?"
"In a little bit."
"Okay." She was satisfied with that answer and settled into a chair to await her ride home.
The staff member knew she wasn't going anywhere. I knew she wouldn't be leaving anytime soon as this is her home now. This is where this Alzheimer's patient needed to be for her own safety and because she needed the constant supervision that her family could no longer provide. But she didn't need to hear the truth because it would only upset her.
Where would "home" be for someone with Alzheimer's? Is it the place where they last resided? Or is it the only home they can remember, the place where they grew up? No one knows, and it doesn't really matter. Let them "build" their home anywhere they want, and assure them when they ask that they'll be going there sometime soon. That's all some of them need to hear.
A comforting lie can be more powerful and calming than the truth. That's definitely worth remembering when it comes to Alzheimer's.
He was in a pretty good mood today, smiling and laughing. He shook his head at the man who continued to get out of his wheelchair, setting off the alarm countless times. The bell didn't phase my friend or any of the others who sat or walked. I knew I'd go mad if I had to listen to it for very long.
One woman mumbled that "It's okay if you want to talk about me" and walked away.
Another woman fretted about her babies, hoping they weren't sitting out in the cold and snow. She asked no one in particular if her babies had been fed.
"Isn't it time to go home?" she asked one of the staff.
"No, not yet," the staff member replied gently.
"Well, when?"
"In a little bit."
"Okay." She was satisfied with that answer and settled into a chair to await her ride home.
The staff member knew she wasn't going anywhere. I knew she wouldn't be leaving anytime soon as this is her home now. This is where this Alzheimer's patient needed to be for her own safety and because she needed the constant supervision that her family could no longer provide. But she didn't need to hear the truth because it would only upset her.
Where would "home" be for someone with Alzheimer's? Is it the place where they last resided? Or is it the only home they can remember, the place where they grew up? No one knows, and it doesn't really matter. Let them "build" their home anywhere they want, and assure them when they ask that they'll be going there sometime soon. That's all some of them need to hear.
A comforting lie can be more powerful and calming than the truth. That's definitely worth remembering when it comes to Alzheimer's.
Friday, January 22, 2010
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.
"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.
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