Not familiar with Pre-Need...or considering signing up for one? For a brief overview of Pre-Need, please read my archived post of July 18, 2008, with the title: IS “PRE-NEED” REALLY NEEDED?
As I point out in that article, there are times when such an arrangement can be useful. However, as I also point out, there are pitfalls to watch for. One of these pitfalls has to do with the financial strength of the funeral firm which is asking you for up front payment along with its contract.
Here's a pertinent quote from a Wall Street Journal article, "FBI INVESTIGATES FUNERAL CONTRACT COMPANY," published on November 12, 2008:
"The FBI is looking into alleged misconduct by a funeral contract company that guaranteed hundreds of millions of dollars of services to families before becoming insolvent…The FBI letter says the questionnaire is being mailed to funeral homes because it's impossible for agents to personally interview representatives from the "voluminous number of funeral homes" in the 19 states where the company had done business…In preneed funeral arrangements, customers pay for their funeral and burial services before their deaths. For example, a customer who bought a package of funeral services valued at $5,000 in 1995 would receive those same services upon his or her death in 2008, even if the value had risen to $8,500 with inflation. Under such arrangements, money for a prepaid funeral generally is placed in a trust account that bears interest."
Clearly, this will only work if the company remains in business. If it goes bankrupt before you or your family member needs the service, your money may be permanently lost. So the warning here is to make sure, to the best you are able, that the company wanting your business is likely to stay in business.
Admittedly, this is not always easy. But like all other transactions in the marketplace, the rule is Caveat Emptor: Let the buyer beware!
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Friday, November 14, 2008
Monday, November 10, 2008
Links of Love and Caring
First, I wish to thank my loyal readers for their comments and support. Sadly, the response has just been too few and far between to justify the time and effort involved in posting all the chapters from my book, Dementia Diary, here on this blog. For those wishing to read more, there is good news. There is a page on my website (http://www.dementia-diary.com) that provides a free download of additional chapters. And, of course, anyone may still buy a complete copy for themselves or as a gift for someone they love that might benefit from reading it.
It was an interesting experiment but, from now on, I am returning to posting more traditional articles.
For starters, here's a listing of helpful links from my website. All have been tested and are useful to dementia caregivers everywhere. If any of them don't work by clicking, copy and paste the URL into the address section of your browser. Give them a try:
1. Coping with Caregiving--Bob's Radio Interview:
http://www.wsradio.com/internet-talk-radio.cfm/shows/Coping-with-Caregiving/archives/date/selected/05-20-2006.html
2. Alzheimer's Association | Home:
http://www.alz.org/index.asp
3. MedlinePlus: Dementia:
http://www.nlm.nih.gov/medlineplus/dementia.html
4. Dementia Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/disorders/dementias/dementia.htm
5. Minding Our Elders: Caregivers Share Their Personal Stories
http://www.mindingourelders.com/
6. Medicare Nursing Home Comparisons
http://www.medicare.gov/NHCompare/
7. ConsumerReports.org - Nursing home guide
http://www.consumerreports.org/cro/health-fitness/nursing-home-guide/0608_nursing-home-guide.htm
8. The American Geriatrics Society -Dementia
http://www.americangeriatrics.org/education/forum/dementia.shtml
9. Silver Planet
http://www.silverplanet.com/
10. Alzheimer's ideas
http://www.alzheimersideas.com/
If you know of other links that have helped you, please pass them along.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
It was an interesting experiment but, from now on, I am returning to posting more traditional articles.
For starters, here's a listing of helpful links from my website. All have been tested and are useful to dementia caregivers everywhere. If any of them don't work by clicking, copy and paste the URL into the address section of your browser. Give them a try:
1. Coping with Caregiving--Bob's Radio Interview:
http://www.wsradio.com/internet-talk-radio.cfm/shows/Coping-with-Caregiving/archives/date/selected/05-20-2006.html
2. Alzheimer's Association | Home:
http://www.alz.org/index.asp
3. MedlinePlus: Dementia:
http://www.nlm.nih.gov/medlineplus/dementia.html
4. Dementia Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/disorders/dementias/dementia.htm
5. Minding Our Elders: Caregivers Share Their Personal Stories
http://www.mindingourelders.com/
6. Medicare Nursing Home Comparisons
http://www.medicare.gov/NHCompare/
7. ConsumerReports.org - Nursing home guide
http://www.consumerreports.org/cro/health-fitness/nursing-home-guide/0608_nursing-home-guide.htm
8. The American Geriatrics Society -Dementia
http://www.americangeriatrics.org/education/forum/dementia.shtml
9. Silver Planet
http://www.silverplanet.com/
10. Alzheimer's ideas
http://www.alzheimersideas.com/
If you know of other links that have helped you, please pass them along.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Thursday, November 6, 2008
Is This Important?
For the past month I've been posting copyrighted excerpts of my book, Dementia Diary, on this blog. As I said weeks ago, I hope that getting a taste of the book in this way will prompt more people to buy it (and many have)—but, more importantly, I want people to read it. I wrote it primarily to help caregivers cope with their own situations and I've been gratified by the hundreds of wonderful email comments I've received since my memoir was published. However, only two reader comments have been posted so far for the book excerpts on this blog, leading me to wonder whether anyone is reading these excerpts, and if this is something I should continue. So here's a test of whether this is important to you. If you are reading and enjoying these excerpts, please post a comment and let me know. If I don't receive substantial feedback during the coming week that these excerpts have a following, I will discontinue posting them. Of course, the entire book will continue to be available for purchase from on-line retailers. I hope to hear from you.
Friday, October 24, 2008
DYING TO SHOP
Here is the fourth excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.
DYING TO SHOP
When Minnie and Sidney Sweet retired to Florida around 1970, he was in his mid 60’s and she in her late 50’s. They were young retirees. Sid sold his small manufacturing business, and the building housing it, for just enough money to promise a comfortable, if not opulent, lifestyle. So they took the plunge. They left their only son. They left their daughter-in-law, and their three grandchildren. They left siblings, cousins and lifelong friends, and they bought a condo in a Florida retirement village.
You know the kind. Two bedrooms. Two bathrooms. A living room leading to a Florida room (porch, to you) that looked out at the seventh hole. A small kitchen (who cooks? It’s cheaper to eat out with the Early Bird)—and insufficient closet space.
The community boasted a full time resort atmosphere complete with clubhouse, swimming pools, tennis courts, golf course, transit system, and security gate. And, of course, shuffleboard. The ubiquitous shuffleboard. The Sweets never looked back!
The stock market decline of the 1970’s took the glow off the carefree nature of their relocation. It was a disappointment for Sidney, and one that attacked his self-image as a provider and protector of his family. Even though he had no personal control over what was happening to the economy, nothing could convince him that their troubles weren’t his fault. For Minnie, it was a shock to her sense of security. Her verbal expressions of these feelings did little to help Sidney overcome his guilt feelings.
Still, the Sweets had enough money left, when combined with Social Security and Medicare, to maintain a modest but adequate existence. So they survived. Actually, they thrived. In spite of the economy, they soared. The years flew by. They joined every charitable organization they could find. So did all the other newcomers.
The Sweets were warm and affable people. They provided a happy home for me as a youngster and, after I married, a loving embrace for the new family that I was creating. It was not surprising that they made many new friends in Florida. People liked and respected them. Sidney’s sense of humor and his integrity were widely admired, and he was a role model that many aspired to imitate. This was especially true for his son. Minnie’s enthusiastic and outgoing nature attracted people to her like bears to honey. They played golf, went to meetings, played golf, enjoyed social events, played golf, had doctor appointments (of which there were many), played golf and, of course, they shopped.
Shopping, for most of us, is about meeting our basic needs and desires for food, clothing, gadgets and luxury items. For some people, however, it has other satisfactions and it fills other needs. It may be a social event with emotional overtones—or a way to fill time in an otherwise boring life—or even, for some, an addiction that brings cheer to an otherwise dreary disposition. This can be as true for snowbirds and retirees of the Sunbelt as it is for the rest of the population—maybe even truer.
Consider a typical day in the life of the Sweets. In the morning they’d shop for, say, a toaster oven. They’d buy one, take it home and plug it in. They’d then enjoy a nice lunch with slices of toast made in their new purchase. But there’d be a problem. The bread might be browning less evenly than expected. Maybe it would even be getting a little too dark and crisp along the edges. They wanted a perfect piece of toast, something that the new oven seemed incapable of producing. Too bad! They’d have to bring the toaster back. They’d return it to the store for a refund and then, of course, would proceed to buy something else that would probably have to be returned the next day. And so it went. Day after day after day. And the Sweets were joined in these daily shopping adventures by thousands of their contemporaries. One wonders how the retailers managed to stay in business.
If this description seems amusing, consider the other side of the story. Shopping can provide a brief escape from the preoccupation with death and disease that is the constant companion of the seniors that populate these retirement communities. Their adult children “up north” may still believe in the illusion of their own immortality, but our shoppers know better. And yet, these older Americans somehow manage to mix a laugh or two with the bad things that happen daily to their neighbors, friends, and to themselves. It’s how they cope with their reality.
A case in point: While there isn’t anything happy in the tragedy about to be described, there is a bit of the ironic. Something that may elicit a smile or two even as it evokes the tears. Here’s what happened. One day in 1990, Minnie and Sidney Sweet decided to go to a nearby Sears & Roebuck store. It was early and the store just opened. They entered the store and, as they walked toward the escalators, Sidney died. That’s right, he died. On the spot. One minute he was walking alongside Minnie and the next he was laying face down where he had pitched forward onto the floor. With no sound, no cry of pain, nothing. His complexion was grey, and he was gone.
Later, a doctor was to say it was a massive heart event, that Sidney had felt no discomfort and never knew what happened. The doctor said it was a good way to die, easy on the deceased, but hard on his loved ones. It was indeed very hard on his son (and I should know), but it was hardest on Minnie. Imagine her horror. She had spent all of her married life almost totally dependent on her husband. She didn’t drive (more about that at another time), was rarely separated from him, and drew her emotional strength and most of her identity from him. It was not an uncommon role for women of her generation.
Also, her dementia had started. Not that anyone close to her, or she herself, recognized that her exaggerated personality quirks and her growing memory lapses were due to illness. They were just “Minnie,” and what could you do? Perhaps Sidney knew something was amiss. Perhaps not. But without him to “cover” for her behavioral idiosyncrasies, she would become more and more exposed.
In any event, Minnie never really expected to have to face life without Sidney. Oh, she knew that they were getting into the dangerous years, and they had even talked about it. But that was an abstraction, not something that could really happen. Until that morning at Sears, when it did. And what a way to have to face it. Alone among strangers, in a department store, sudden death. A catastrophe. She screamed and cried and couldn’t be consoled. She was seventy-seven.
Why, you ask, were they in a Sears store that morning? You guessed it. They were returning a small rug they had purchased the day before for the floor of their bathroom. It didn’t look as nice as they had anticipated. Twelve years after the event, at eighty-nine, Minnie would smile when asked whether Sid died before or after they returned the rug, and whether they were able to get their refund. She would chuckle at the thought, but could not recall the answer. A year later, at ninety, she would struggle to remember who Sidney was—and she would ask the visitor to tell her how her husband died.
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
DYING TO SHOP
When Minnie and Sidney Sweet retired to Florida around 1970, he was in his mid 60’s and she in her late 50’s. They were young retirees. Sid sold his small manufacturing business, and the building housing it, for just enough money to promise a comfortable, if not opulent, lifestyle. So they took the plunge. They left their only son. They left their daughter-in-law, and their three grandchildren. They left siblings, cousins and lifelong friends, and they bought a condo in a Florida retirement village.
You know the kind. Two bedrooms. Two bathrooms. A living room leading to a Florida room (porch, to you) that looked out at the seventh hole. A small kitchen (who cooks? It’s cheaper to eat out with the Early Bird)—and insufficient closet space.
The community boasted a full time resort atmosphere complete with clubhouse, swimming pools, tennis courts, golf course, transit system, and security gate. And, of course, shuffleboard. The ubiquitous shuffleboard. The Sweets never looked back!
The stock market decline of the 1970’s took the glow off the carefree nature of their relocation. It was a disappointment for Sidney, and one that attacked his self-image as a provider and protector of his family. Even though he had no personal control over what was happening to the economy, nothing could convince him that their troubles weren’t his fault. For Minnie, it was a shock to her sense of security. Her verbal expressions of these feelings did little to help Sidney overcome his guilt feelings.
Still, the Sweets had enough money left, when combined with Social Security and Medicare, to maintain a modest but adequate existence. So they survived. Actually, they thrived. In spite of the economy, they soared. The years flew by. They joined every charitable organization they could find. So did all the other newcomers.
The Sweets were warm and affable people. They provided a happy home for me as a youngster and, after I married, a loving embrace for the new family that I was creating. It was not surprising that they made many new friends in Florida. People liked and respected them. Sidney’s sense of humor and his integrity were widely admired, and he was a role model that many aspired to imitate. This was especially true for his son. Minnie’s enthusiastic and outgoing nature attracted people to her like bears to honey. They played golf, went to meetings, played golf, enjoyed social events, played golf, had doctor appointments (of which there were many), played golf and, of course, they shopped.
Shopping, for most of us, is about meeting our basic needs and desires for food, clothing, gadgets and luxury items. For some people, however, it has other satisfactions and it fills other needs. It may be a social event with emotional overtones—or a way to fill time in an otherwise boring life—or even, for some, an addiction that brings cheer to an otherwise dreary disposition. This can be as true for snowbirds and retirees of the Sunbelt as it is for the rest of the population—maybe even truer.
Consider a typical day in the life of the Sweets. In the morning they’d shop for, say, a toaster oven. They’d buy one, take it home and plug it in. They’d then enjoy a nice lunch with slices of toast made in their new purchase. But there’d be a problem. The bread might be browning less evenly than expected. Maybe it would even be getting a little too dark and crisp along the edges. They wanted a perfect piece of toast, something that the new oven seemed incapable of producing. Too bad! They’d have to bring the toaster back. They’d return it to the store for a refund and then, of course, would proceed to buy something else that would probably have to be returned the next day. And so it went. Day after day after day. And the Sweets were joined in these daily shopping adventures by thousands of their contemporaries. One wonders how the retailers managed to stay in business.
If this description seems amusing, consider the other side of the story. Shopping can provide a brief escape from the preoccupation with death and disease that is the constant companion of the seniors that populate these retirement communities. Their adult children “up north” may still believe in the illusion of their own immortality, but our shoppers know better. And yet, these older Americans somehow manage to mix a laugh or two with the bad things that happen daily to their neighbors, friends, and to themselves. It’s how they cope with their reality.
A case in point: While there isn’t anything happy in the tragedy about to be described, there is a bit of the ironic. Something that may elicit a smile or two even as it evokes the tears. Here’s what happened. One day in 1990, Minnie and Sidney Sweet decided to go to a nearby Sears & Roebuck store. It was early and the store just opened. They entered the store and, as they walked toward the escalators, Sidney died. That’s right, he died. On the spot. One minute he was walking alongside Minnie and the next he was laying face down where he had pitched forward onto the floor. With no sound, no cry of pain, nothing. His complexion was grey, and he was gone.
Later, a doctor was to say it was a massive heart event, that Sidney had felt no discomfort and never knew what happened. The doctor said it was a good way to die, easy on the deceased, but hard on his loved ones. It was indeed very hard on his son (and I should know), but it was hardest on Minnie. Imagine her horror. She had spent all of her married life almost totally dependent on her husband. She didn’t drive (more about that at another time), was rarely separated from him, and drew her emotional strength and most of her identity from him. It was not an uncommon role for women of her generation.
Also, her dementia had started. Not that anyone close to her, or she herself, recognized that her exaggerated personality quirks and her growing memory lapses were due to illness. They were just “Minnie,” and what could you do? Perhaps Sidney knew something was amiss. Perhaps not. But without him to “cover” for her behavioral idiosyncrasies, she would become more and more exposed.
In any event, Minnie never really expected to have to face life without Sidney. Oh, she knew that they were getting into the dangerous years, and they had even talked about it. But that was an abstraction, not something that could really happen. Until that morning at Sears, when it did. And what a way to have to face it. Alone among strangers, in a department store, sudden death. A catastrophe. She screamed and cried and couldn’t be consoled. She was seventy-seven.
Why, you ask, were they in a Sears store that morning? You guessed it. They were returning a small rug they had purchased the day before for the floor of their bathroom. It didn’t look as nice as they had anticipated. Twelve years after the event, at eighty-nine, Minnie would smile when asked whether Sid died before or after they returned the rug, and whether they were able to get their refund. She would chuckle at the thought, but could not recall the answer. A year later, at ninety, she would struggle to remember who Sidney was—and she would ask the visitor to tell her how her husband died.
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Saturday, October 18, 2008
SOME ARE CALLED
Here is the third excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.
SOME ARE CALLED
One Sunday morning in December 1990, I was enjoying the quiet isolation of my business office while trying to clean up the loose ends of a hectic workweek. No one was around and I was sailing along, making great progress. I was feeling particularly happy. Business was booming. Several new contracts had been faxed in late Friday afternoon, accounts receivable were up to date, major projects were moving well toward completion, and I was beginning to think about heading home.
“Ring.” It was the phone. It didn’t actually ring but, instead, made that bone jarring electronic sound that has replaced the mechanical bell of older telephones (When did that triumph of 21st Century technology occur?). There is no word yet invented in the English language to adequately describe that sound. So…
“Ring,” will have to do.
It took me several moments to react. After all, who could be calling a business office on a Sunday morning? It must be a wrong number, I thought. I didn’t expect my wife, Nadine, to call. She knew that I preferred to work undisturbed on weekend office visits. I debated not answering it, but the so-called ring was persistent and, finally, as much from curiosity as anything else, I gave in.
“Hello?”
“Jerry?” It was Nadine’s voice.
I decided to be flippant. “You were expecting, maybe, Woody Allen?” I quipped, to let her know that I didn’t mind the interruption. “What’s up?”
The first sign of trouble was the silence at the other end. It was only a moment, but it was long enough to send me a signal. Whatever it was, Nadine was either reluctant to say, or else she did not know quite how to proceed.
“Jerry, I’m sorry to bother you. I know how much you…”
“It’s Okay, Nadine. I’m almost done for today. I was just wrapping up. I’ll be home in half an hour.”
“Oh,” and then silence for another interminable moment. Then, “Listen. It can wait. Just come home.”
All my antennae were up now. “Nadine,” I said. “I’ve got a minute. You called for a reason. So now I’m curious. What’s happening?”
“Really, Jerry, it can wait. If I knew you were getting ready to leave, I wouldn’t have called.”
Now I was getting alarmed or annoyed. I wasn’t really sure which. Probably both. There was something in Nadine’s voice that scared me.
“What’s with all the mystery?” I asked. “Don’t make me crazy. You called me, so what is it that couldn’t wait before; and, now, all of a sudden, it can?”
“Your Aunt Charlotte called.”
This was my mother Minnie’s younger sister, my favorite Aunt, and the closest thing I had to a sibling. She called frequently, but not usually on Sunday mornings. I didn’t know the details yet, but I was beginning to guess where this conversation was going. Hoping that I was jumping to false conclusions, I asked,
“Charlotte? What did she want? Is everything Okay in Florida?”
“She just called and asked me to contact you and ask you to come home.”
This was getting stranger and stranger. I was starting to understand how a district attorney must feel when cross-examining a hostile witness. My poor wife was clearly in distress. I was not yet completely conscious of the fact that what she had to say would hurt me, but my instincts were figuring it out fast.
“Nadine, come clean,” I begged. “Why did she ask you to do this?”
“She asked me not to tell you on the phone. She just said to get you to come home as soon as possible.”
Bingo! Minnie had been ailing recently with chronic obstructive pulmonary disease, congestive heart failure, anxiety attacks and depression, high blood pressure, and spinal arthritis.
So now I thought I knew why Nadine was calling. We had often discussed the relative issues associated with the loss of either of my parents in terms of who might go first. Minnie always seemed to be the more fragile of the two, so I was quite sure of the answer when I asked quietly, holding my breath.
“It’s my mother, isn’t it?”
“No.”
Oh, oh. That didn’t leave a lot of alternatives. Still, I asked, hoping for another negative, “My father?”
“Yes.”
Pause.
“Dead?” Please God, have her say “No.”
“Yes.”
The room began to spin. I said nothing. I couldn’t speak. I just sat there holding the receiver. From somewhere deep inside a tremor started and worked its way outward gathering momentum as it migrated. Soon it was forcing its way up through my chest and out through my throat. A huge sob broke forth surprising me with its power.
“Are you alright?” Nadine asked, her voice barely a whisper.
“No,” I replied. I wanted to say more but choked on my words. I just sat there and tried to fight the sobs, but it was impossible. They consumed me. Nadine sat patiently on the other end, saying nothing, waiting for my lead. Finally, when the spasm ended, I asked,
“How?”
She filled me in on what Charlotte had told her.
“Sears?” I repeated.
“Sears,” she said again.
“Returning a rug?” I repeated. I had heard her, but it was a comic twist to a personal tragedy, and very hard to absorb.
“Returning a rug,” she repeated, and both of us started to laugh. In between the tears, we laughed until it hurt. Feeling guilty about the levity, but unable to ignore the irony in the situation, I laughed until I cried. Then, emotionally spent, I said,
“How’s Minnie taking it? Did Charlotte say?”
“Not good. She’s at Charlotte’s apartment. Charlotte says she was crying hysterically, but she’s sleeping now.”
Another deep breath. It was hard for me to talk. “Call the airlines,” I managed to croak out.
“It’s done. We have a 9:05 am flight tomorrow. I’ve called the kids too. They’re all planning to go.”
I shook my head to try to clear it. “It’s all happening so fast. I can’t believe he’s dead.”
No response from Nadine for a moment. Then, “So, are you coming home now?”
I nodded, although there was no one that could see me. “I’ll be home in twenty minutes,” I said.
“Will you be okay?” she asked.
“I think so. Listen, did you really believe you could get me home without telling me the truth?”
“It seems pretty silly now,” Nadine replied. “Charlotte was insistent that I shouldn’t say anything on the phone, that I had to get you home one way or another first. It seemed like a good idea at the time.”
“Nice try!” I said. “See ya soon.”
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
SOME ARE CALLED
One Sunday morning in December 1990, I was enjoying the quiet isolation of my business office while trying to clean up the loose ends of a hectic workweek. No one was around and I was sailing along, making great progress. I was feeling particularly happy. Business was booming. Several new contracts had been faxed in late Friday afternoon, accounts receivable were up to date, major projects were moving well toward completion, and I was beginning to think about heading home.
“Ring.” It was the phone. It didn’t actually ring but, instead, made that bone jarring electronic sound that has replaced the mechanical bell of older telephones (When did that triumph of 21st Century technology occur?). There is no word yet invented in the English language to adequately describe that sound. So…
“Ring,” will have to do.
It took me several moments to react. After all, who could be calling a business office on a Sunday morning? It must be a wrong number, I thought. I didn’t expect my wife, Nadine, to call. She knew that I preferred to work undisturbed on weekend office visits. I debated not answering it, but the so-called ring was persistent and, finally, as much from curiosity as anything else, I gave in.
“Hello?”
“Jerry?” It was Nadine’s voice.
I decided to be flippant. “You were expecting, maybe, Woody Allen?” I quipped, to let her know that I didn’t mind the interruption. “What’s up?”
The first sign of trouble was the silence at the other end. It was only a moment, but it was long enough to send me a signal. Whatever it was, Nadine was either reluctant to say, or else she did not know quite how to proceed.
“Jerry, I’m sorry to bother you. I know how much you…”
“It’s Okay, Nadine. I’m almost done for today. I was just wrapping up. I’ll be home in half an hour.”
“Oh,” and then silence for another interminable moment. Then, “Listen. It can wait. Just come home.”
All my antennae were up now. “Nadine,” I said. “I’ve got a minute. You called for a reason. So now I’m curious. What’s happening?”
“Really, Jerry, it can wait. If I knew you were getting ready to leave, I wouldn’t have called.”
Now I was getting alarmed or annoyed. I wasn’t really sure which. Probably both. There was something in Nadine’s voice that scared me.
“What’s with all the mystery?” I asked. “Don’t make me crazy. You called me, so what is it that couldn’t wait before; and, now, all of a sudden, it can?”
“Your Aunt Charlotte called.”
This was my mother Minnie’s younger sister, my favorite Aunt, and the closest thing I had to a sibling. She called frequently, but not usually on Sunday mornings. I didn’t know the details yet, but I was beginning to guess where this conversation was going. Hoping that I was jumping to false conclusions, I asked,
“Charlotte? What did she want? Is everything Okay in Florida?”
“She just called and asked me to contact you and ask you to come home.”
This was getting stranger and stranger. I was starting to understand how a district attorney must feel when cross-examining a hostile witness. My poor wife was clearly in distress. I was not yet completely conscious of the fact that what she had to say would hurt me, but my instincts were figuring it out fast.
“Nadine, come clean,” I begged. “Why did she ask you to do this?”
“She asked me not to tell you on the phone. She just said to get you to come home as soon as possible.”
Bingo! Minnie had been ailing recently with chronic obstructive pulmonary disease, congestive heart failure, anxiety attacks and depression, high blood pressure, and spinal arthritis.
So now I thought I knew why Nadine was calling. We had often discussed the relative issues associated with the loss of either of my parents in terms of who might go first. Minnie always seemed to be the more fragile of the two, so I was quite sure of the answer when I asked quietly, holding my breath.
“It’s my mother, isn’t it?”
“No.”
Oh, oh. That didn’t leave a lot of alternatives. Still, I asked, hoping for another negative, “My father?”
“Yes.”
Pause.
“Dead?” Please God, have her say “No.”
“Yes.”
The room began to spin. I said nothing. I couldn’t speak. I just sat there holding the receiver. From somewhere deep inside a tremor started and worked its way outward gathering momentum as it migrated. Soon it was forcing its way up through my chest and out through my throat. A huge sob broke forth surprising me with its power.
“Are you alright?” Nadine asked, her voice barely a whisper.
“No,” I replied. I wanted to say more but choked on my words. I just sat there and tried to fight the sobs, but it was impossible. They consumed me. Nadine sat patiently on the other end, saying nothing, waiting for my lead. Finally, when the spasm ended, I asked,
“How?”
She filled me in on what Charlotte had told her.
“Sears?” I repeated.
“Sears,” she said again.
“Returning a rug?” I repeated. I had heard her, but it was a comic twist to a personal tragedy, and very hard to absorb.
“Returning a rug,” she repeated, and both of us started to laugh. In between the tears, we laughed until it hurt. Feeling guilty about the levity, but unable to ignore the irony in the situation, I laughed until I cried. Then, emotionally spent, I said,
“How’s Minnie taking it? Did Charlotte say?”
“Not good. She’s at Charlotte’s apartment. Charlotte says she was crying hysterically, but she’s sleeping now.”
Another deep breath. It was hard for me to talk. “Call the airlines,” I managed to croak out.
“It’s done. We have a 9:05 am flight tomorrow. I’ve called the kids too. They’re all planning to go.”
I shook my head to try to clear it. “It’s all happening so fast. I can’t believe he’s dead.”
No response from Nadine for a moment. Then, “So, are you coming home now?”
I nodded, although there was no one that could see me. “I’ll be home in twenty minutes,” I said.
“Will you be okay?” she asked.
“I think so. Listen, did you really believe you could get me home without telling me the truth?”
“It seems pretty silly now,” Nadine replied. “Charlotte was insistent that I shouldn’t say anything on the phone, that I had to get you home one way or another first. It seemed like a good idea at the time.”
“Nice try!” I said. “See ya soon.”
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Saturday, October 11, 2008
WHO IS MINNIE SWEET?
Here is the second excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.
WHO IS MINNIE SWEET?
My name is Jerry Sweet and it is my sweet pleasure to be sharing this story with you. That’s right, Jerry Sweet—Sid and Minnie’s only child. I’ll be your tour guide for this entire tale. I assume, if you are reading this, that you are a caregiver or, if not, that you know someone who is. Either way, I think you will be able to relate these vignettes to your own experience and observations.
Throughout this narrative, I have tried to document the shifts in Minnie’s slipping cognition. My purpose has been to demonstrate, with anecdotes and description, the various stages in her disease as it developed from its subtle beginnings to the present time. Most of these pages track Minnie’s life after the age of seventy-seven when Sidney died and her cognitive deficits were exposed. However, for you to truly appreciate the extent of the damage to this previously vital and energetic woman, you need to meet her in her younger years. So let me introduce you to Minnie Sweet in happier days before her dementia came calling.
Minnie’s history was actually rather typical. In the early 20th century, millions of immigrants from Eastern Europe could tell a similar tale. She was born in 1913, in Vilna, Lithuania, one of the three children that beat the odds and survived. Besides Minnie, there was her older sister Beverly, and a brother, Henry. Four other siblings died before reaching their first birthdays. In spite of primitive pre-natal care, non-existent well-baby care, poverty, malnutrition, and the daily violence that permeated her world, Minnie decided to live. It was an early example of a biological hardiness that was to serve her well in the years ahead.
When Minnie was two years old, economic decline and anti-Semitic harassment in Eastern Europe were growing more serious day by day. Minnie’s parents (and my grandparents), Morris and Rebecca Goldberg, decided to escape these dangers and to come to America. They arrived at Ellis Island in 1915, terrified about the possibility of being sent back by the United States authorities. Minnie had rickets, a nutritional disease prevalent at the time among the children of the immigrant poor. A deficiency of vitamin D and/or calcium was the cause, and it was easily corrected if caught in time. However, it affected bone growth and it was not uncommon for would-be Americans to be shipped back for this, or for even less serious health issues.
Luck was with the Goldberg’s, however. They passed through the inspection easily, breathed a big sigh of relief, and settled in the Brownsville-East New York section of Brooklyn. Other relatives also immigrated to this location, and it was fast becoming a cultural center for thousands of Jewish refugees that shared the Goldberg’s history, concerns, beliefs and ethnic background. Life was economically poor, but socially rich. Morris worked in the needle trades and Rebecca stayed home to have one more child, a girl named Charlotte, and to maintain a home for her family. Surrounded by siblings, cousins, aunts, uncles, and other family and friends, Minnie thrived. She became a real American girl. Soon the flapper years were happening, and the Great Depression was still in the future.
Attending college, or even completing high school, was a stretch for most new Americans, especially girls, back then (although Minnie did feel much pride when, decades later, she earned a GED high school equivalency diploma). Rather, it was expected that young people would work to help support the family. And Minnie did. She became a cosmetologist and manicurist, and went to work for Mme. Sweet’s Beauty Salon. It wasn’t long before the boss’s son, Sidney Sweet, noticed her—much to his mother’s dismay. Notwithstanding her objection to Sidney’s fraternizing with the help, a romance blossomed that culminated in a marriage in 1933.
In spite of the Depression, Minnie and Sidney pursued the American dream and became a happy, optimistic couple. They were embraced lovingly by one and all—except by Mme. Sweet, who did everything she could to undermine the relationship. She eventually accepted the inevitable, but not before enabling a lifelong bitterness in her daughter-in-law, who never quite forgave her.
In those days, the sport of boxing was a pathway out of poverty for many immigrant young men, and fighters such as Jack Dempsey and Barney Ross were their role models. Dreaming of money and fame, Sidney Sweet decided to try his hand at prize fighting, but he soon had second thoughts when his nose was broken in the ring.
In 1937, I came along and that changed everything. As a new dad, Sidney now needed to make a steady living. So he took his squashed nose out of the ring and joined the electrician’s union. Minnie became a full time mom lavishing love and attention on her only child. In 1946, Sidney traded his blue-collar shirts for an entrepreneur’s portfolio. He gave up being a master electrician in order to open a small factory for the manufacture of leather novelties.
When I was nine years old, Minnie felt free to begin her new career as the well-organized and capable foreman of the family’s budding manufacturing business—and she was terrific. She was the chief operating officer of the business, the human resources department, the bookkeeper, and the detail person, while Sidney concentrated on product development, sales, and production policy. They were a great team.
So Minnie and Sidney settled into a life surrounded by warm and stable family relationships and friendships, and they began to experience some of the economic success of post-war America. They moved their home multiple times in the 1940’s, 1950’s and 1960’s, each time into a “better” Brooklyn neighborhood. America was being good to these refugees from European poverty and hate, and their patriotic feelings were very strong.
As the economy of the late 1960’s overheated, it ultimately reached the working and lower middle classes. It seemed to the Sweets that everyone they knew had great investments and a winter home in Florida, and they wanted onto this bandwagon. Minnie and Sidney began “snowbirding” to Southeastern Florida in the late 1960’s to see if they might like it. It didn’t take long for them to become property owners and permanent residents in this fast developing region.
Now Minnie really came into her own. She began to apply her considerable organizational skills to various non-profit leadership activities in New York and in Florida. She discovered a love and a talent for communal affairs and accepted one assignment after another. Matron of the Eastern Star; founder and president of at least three Hadassah chapters; member of the town’s library board and its Director of Volunteers; leadership roles in B’nai Brith Women and Jewish War Veterans—and these are just for starters. It was these organizations that supplied the deep and lasting friendships that blessed Minnie and Sidney for the several decades of their lives in Florida.
Of course, the idyll I’ve been describing had to end. Even as Minnie multi-tasked and spread her social wings across Southeastern Florida, something was changing in her brain and personality. That something was mistakenly assumed by those closest to her to be excessive stubbornness and selfishness. We were right in what we observed, but wrong about the cause.
In 1990, Sidney died and Minnie’s descent down the “slippery slope” of multi-infarct dementia accelerated. Today, in 2005, she has not yet reached the base of this slope, but she is certainly nearing the end of her journey. At first, when she was beginning her slide, none of her loved ones, including me (especially me), understood that her sometimes difficult and abrasive behavior was part of a progressive disease process. Today, her illness is obvious. Looking back, milestones in her decline can be identified. The various chapters of this book are intended to give life to the circumstances surrounding these turning points.
At each of her transitions, whenever Minnie reached a new low in functioning, I thought that she could not decline further and still remain “alive.” Each time, it was like a mini-death. Each time, I grieved anew. Often, just when I had finally made my peace with her new level, she would rally and seem to regain ground that she had lost. When this occurred, I usually allowed myself to be duped into believing that she was not as bad as I had feared. Each time, though, something soon happened to highlight Minnie’s new deficits. Whenever I thought that she could not possibly lose additional cognition and continue to function as a viable human being, it turned out that she had not yet reached bottom. It seems that there is no conclusion to the deterioration process, other than the grave.
As I write this, Minnie is getting ready to experience her ninety-second birthday. No one close to her ever expected her to live so long. That she did so is both a blessing and a curse. For her more than for me. Dramatic changes took place in her in the years since Sidney died, changes that became more noticeable and more frequent over time. She gradually became mild and amiable, non-confrontational, and unlike the agitated Minnie that emerged from mourning her husband’s death.
Observing these changes in the early stages of her dementia, I was forced to marvel: is this the mother who made me crazy all those years when her emotions were out of control? Or is this gentle and loving paragon of a happy old age the true, underlying person? Did the psychotropic drugs she took mask her authentic nature or, conversely, did these medications permit the real, kind, and thoughtful Minnie to shine through at last? To what extent is personality only chemistry? Who is the real Minnie Sweet?
In 1997, Minnie moved up north to be near family. Thankfully, she is still among us. Of course, no one knows know how much time she has left and, as she said long ago, she has “longevity.” Every day that goes by, however, sees further diminution in her capabilities. When she first came to live near me, I visited several times a week for an hour or so and, whenever possible, took her out of the institutional environment. Later, when I could no longer take her on outings, she could still reminisce, share memories, look at family photos, sit outside in nice weather, and maintain a reasonable conversation.
Even the telephone was a useful medium for staying in touch. Today, our phone conversations are no more, and my visits have become less frequent and shorter. She is thrilled when she sees me and, remarkably, still knows who I am. Occasionally, she will respond to my questions with one-word answers. More frequently, she says nothing. If I stop talking, we sit in silence.
Yet, until recently, Minnie kept radiating love and happiness. She sometimes still does, although less often these days. Does her life have quality? Who can say? Before she came up north, I would have argued that no one in her current condition could enjoy life. I would have said that I’d never want to live in such circumstances. Today, I’m not so sure. Every moment of every day is new to Minnie Sweet. She still smiles a lot. And she still blows kisses to everyone.
Quality of life? What is that? Whatever it is, for most of her time here, I think Minnie had it.
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
WHO IS MINNIE SWEET?
My name is Jerry Sweet and it is my sweet pleasure to be sharing this story with you. That’s right, Jerry Sweet—Sid and Minnie’s only child. I’ll be your tour guide for this entire tale. I assume, if you are reading this, that you are a caregiver or, if not, that you know someone who is. Either way, I think you will be able to relate these vignettes to your own experience and observations.
Throughout this narrative, I have tried to document the shifts in Minnie’s slipping cognition. My purpose has been to demonstrate, with anecdotes and description, the various stages in her disease as it developed from its subtle beginnings to the present time. Most of these pages track Minnie’s life after the age of seventy-seven when Sidney died and her cognitive deficits were exposed. However, for you to truly appreciate the extent of the damage to this previously vital and energetic woman, you need to meet her in her younger years. So let me introduce you to Minnie Sweet in happier days before her dementia came calling.
Minnie’s history was actually rather typical. In the early 20th century, millions of immigrants from Eastern Europe could tell a similar tale. She was born in 1913, in Vilna, Lithuania, one of the three children that beat the odds and survived. Besides Minnie, there was her older sister Beverly, and a brother, Henry. Four other siblings died before reaching their first birthdays. In spite of primitive pre-natal care, non-existent well-baby care, poverty, malnutrition, and the daily violence that permeated her world, Minnie decided to live. It was an early example of a biological hardiness that was to serve her well in the years ahead.
When Minnie was two years old, economic decline and anti-Semitic harassment in Eastern Europe were growing more serious day by day. Minnie’s parents (and my grandparents), Morris and Rebecca Goldberg, decided to escape these dangers and to come to America. They arrived at Ellis Island in 1915, terrified about the possibility of being sent back by the United States authorities. Minnie had rickets, a nutritional disease prevalent at the time among the children of the immigrant poor. A deficiency of vitamin D and/or calcium was the cause, and it was easily corrected if caught in time. However, it affected bone growth and it was not uncommon for would-be Americans to be shipped back for this, or for even less serious health issues.
Luck was with the Goldberg’s, however. They passed through the inspection easily, breathed a big sigh of relief, and settled in the Brownsville-East New York section of Brooklyn. Other relatives also immigrated to this location, and it was fast becoming a cultural center for thousands of Jewish refugees that shared the Goldberg’s history, concerns, beliefs and ethnic background. Life was economically poor, but socially rich. Morris worked in the needle trades and Rebecca stayed home to have one more child, a girl named Charlotte, and to maintain a home for her family. Surrounded by siblings, cousins, aunts, uncles, and other family and friends, Minnie thrived. She became a real American girl. Soon the flapper years were happening, and the Great Depression was still in the future.
Attending college, or even completing high school, was a stretch for most new Americans, especially girls, back then (although Minnie did feel much pride when, decades later, she earned a GED high school equivalency diploma). Rather, it was expected that young people would work to help support the family. And Minnie did. She became a cosmetologist and manicurist, and went to work for Mme. Sweet’s Beauty Salon. It wasn’t long before the boss’s son, Sidney Sweet, noticed her—much to his mother’s dismay. Notwithstanding her objection to Sidney’s fraternizing with the help, a romance blossomed that culminated in a marriage in 1933.
In spite of the Depression, Minnie and Sidney pursued the American dream and became a happy, optimistic couple. They were embraced lovingly by one and all—except by Mme. Sweet, who did everything she could to undermine the relationship. She eventually accepted the inevitable, but not before enabling a lifelong bitterness in her daughter-in-law, who never quite forgave her.
In those days, the sport of boxing was a pathway out of poverty for many immigrant young men, and fighters such as Jack Dempsey and Barney Ross were their role models. Dreaming of money and fame, Sidney Sweet decided to try his hand at prize fighting, but he soon had second thoughts when his nose was broken in the ring.
In 1937, I came along and that changed everything. As a new dad, Sidney now needed to make a steady living. So he took his squashed nose out of the ring and joined the electrician’s union. Minnie became a full time mom lavishing love and attention on her only child. In 1946, Sidney traded his blue-collar shirts for an entrepreneur’s portfolio. He gave up being a master electrician in order to open a small factory for the manufacture of leather novelties.
When I was nine years old, Minnie felt free to begin her new career as the well-organized and capable foreman of the family’s budding manufacturing business—and she was terrific. She was the chief operating officer of the business, the human resources department, the bookkeeper, and the detail person, while Sidney concentrated on product development, sales, and production policy. They were a great team.
So Minnie and Sidney settled into a life surrounded by warm and stable family relationships and friendships, and they began to experience some of the economic success of post-war America. They moved their home multiple times in the 1940’s, 1950’s and 1960’s, each time into a “better” Brooklyn neighborhood. America was being good to these refugees from European poverty and hate, and their patriotic feelings were very strong.
As the economy of the late 1960’s overheated, it ultimately reached the working and lower middle classes. It seemed to the Sweets that everyone they knew had great investments and a winter home in Florida, and they wanted onto this bandwagon. Minnie and Sidney began “snowbirding” to Southeastern Florida in the late 1960’s to see if they might like it. It didn’t take long for them to become property owners and permanent residents in this fast developing region.
Now Minnie really came into her own. She began to apply her considerable organizational skills to various non-profit leadership activities in New York and in Florida. She discovered a love and a talent for communal affairs and accepted one assignment after another. Matron of the Eastern Star; founder and president of at least three Hadassah chapters; member of the town’s library board and its Director of Volunteers; leadership roles in B’nai Brith Women and Jewish War Veterans—and these are just for starters. It was these organizations that supplied the deep and lasting friendships that blessed Minnie and Sidney for the several decades of their lives in Florida.
Of course, the idyll I’ve been describing had to end. Even as Minnie multi-tasked and spread her social wings across Southeastern Florida, something was changing in her brain and personality. That something was mistakenly assumed by those closest to her to be excessive stubbornness and selfishness. We were right in what we observed, but wrong about the cause.
In 1990, Sidney died and Minnie’s descent down the “slippery slope” of multi-infarct dementia accelerated. Today, in 2005, she has not yet reached the base of this slope, but she is certainly nearing the end of her journey. At first, when she was beginning her slide, none of her loved ones, including me (especially me), understood that her sometimes difficult and abrasive behavior was part of a progressive disease process. Today, her illness is obvious. Looking back, milestones in her decline can be identified. The various chapters of this book are intended to give life to the circumstances surrounding these turning points.
At each of her transitions, whenever Minnie reached a new low in functioning, I thought that she could not decline further and still remain “alive.” Each time, it was like a mini-death. Each time, I grieved anew. Often, just when I had finally made my peace with her new level, she would rally and seem to regain ground that she had lost. When this occurred, I usually allowed myself to be duped into believing that she was not as bad as I had feared. Each time, though, something soon happened to highlight Minnie’s new deficits. Whenever I thought that she could not possibly lose additional cognition and continue to function as a viable human being, it turned out that she had not yet reached bottom. It seems that there is no conclusion to the deterioration process, other than the grave.
As I write this, Minnie is getting ready to experience her ninety-second birthday. No one close to her ever expected her to live so long. That she did so is both a blessing and a curse. For her more than for me. Dramatic changes took place in her in the years since Sidney died, changes that became more noticeable and more frequent over time. She gradually became mild and amiable, non-confrontational, and unlike the agitated Minnie that emerged from mourning her husband’s death.
Observing these changes in the early stages of her dementia, I was forced to marvel: is this the mother who made me crazy all those years when her emotions were out of control? Or is this gentle and loving paragon of a happy old age the true, underlying person? Did the psychotropic drugs she took mask her authentic nature or, conversely, did these medications permit the real, kind, and thoughtful Minnie to shine through at last? To what extent is personality only chemistry? Who is the real Minnie Sweet?
In 1997, Minnie moved up north to be near family. Thankfully, she is still among us. Of course, no one knows know how much time she has left and, as she said long ago, she has “longevity.” Every day that goes by, however, sees further diminution in her capabilities. When she first came to live near me, I visited several times a week for an hour or so and, whenever possible, took her out of the institutional environment. Later, when I could no longer take her on outings, she could still reminisce, share memories, look at family photos, sit outside in nice weather, and maintain a reasonable conversation.
Even the telephone was a useful medium for staying in touch. Today, our phone conversations are no more, and my visits have become less frequent and shorter. She is thrilled when she sees me and, remarkably, still knows who I am. Occasionally, she will respond to my questions with one-word answers. More frequently, she says nothing. If I stop talking, we sit in silence.
Yet, until recently, Minnie kept radiating love and happiness. She sometimes still does, although less often these days. Does her life have quality? Who can say? Before she came up north, I would have argued that no one in her current condition could enjoy life. I would have said that I’d never want to live in such circumstances. Today, I’m not so sure. Every moment of every day is new to Minnie Sweet. She still smiles a lot. And she still blows kisses to everyone.
Quality of life? What is that? Whatever it is, for most of her time here, I think Minnie had it.
End of Chapter
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Tuesday, October 7, 2008
Preface to Dementia Diary
As promised, here is the first free excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return for the next installment.
Next week, watch for the first Chapter: Who Is Minnie Sweet?"
"PREFACE
This is neither a guidebook nor compendium of advice about how to cope with caring for an aging parent or spouse with dementia. There are literally hundreds of such tomes available. My hope, instead, is that this book will become a kind of "portable support group" for caregivers.
Dementia Diary is first and foremost a memoir about what it’s like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.
Those who know my family will recognize that the name I’ve given my mother in this book, Minnie Sweet, is not her real name. Why did I change her name? I have two reasons.
First, even though the narrative is largely autobiographical, some facts have been fictionalized for effect. Second, and more important, writing this memoir has been one of the most emotionally difficult projects I have ever undertaken.
In order for me to attempt it with even a semblance of objectivity, I required an artifact. Using fabricated names was that artifact—it was a distancing technique that enabled me to approach this powerful topic with safety, compassion and humor. So all of the names in this memoir are fictitious, including my parent’s and mine. This worked for me and I hope it works for you.
It is also possible that someone with one of the names I used may read this book. If so, please understand the happenstance involved, and accept my apologies. Any resemblance to any real persons living or dead is purely coincidental.
I also intend for the institutions that served my mother to remain anonymous. She was fortunate to have found her way to some wonderful facilities and programs that, I believe, extended her years and the quality of her life. However, for consistency with the “semi-fictional” nature of this memoir, these institutions are best left unidentified, and any resemblance to actual facilities and programs is purely coincidental.
A word about Mom’s long, slow descent into the opaque fog of multi-infarct dementia: This is a different syndrome than the well-known dementia called Alzheimer’s disease, and it can be caused by frequent “silent” mini-strokes.
Here is the way a physician described the condition to me: the “victim” of such events may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear. While some of these manifestations are unique to this syndrome, all dementias have certain behavioral commonalities that will be recognized in these pages.
I address this book to readers who are actively involved in care giving for loved ones with dementia, to those who have had this responsibility in the past, and to those who expect to face it in the future. Perhaps you will find a nugget here and there with which to identify, and from which to draw some comfort and support.
I also address this book to professionals charged with the care of persons with dementia. Perhaps it will provide a bit of insight into the perspective of a family member attempting to understand and deal with a loved one’s loss of identity, memory, and cognition.
The inspiration for this diary was a talk that I was invited to give to a conference of caregivers sponsored by an adult day care program for people with dementia. The agenda included speeches by a psychiatrist and a geriatrician, followed by a panel of four caregivers reporting on their own experiences.
The purpose was to educate, inform and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.
At first, I didn’t want to make this presentation. I thought it would be an improper invasion of my mother’s privacy to talk about her in a public forum. Besides, it was an emotionally powerful subject and, even though I had done a lot of public speaking, I wasn’t sure I could handle this one in a calm and professional manner.
But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don’t easily do this kind of thing, they said, so “please,” they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.
In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.
I also asked many of the women present if such a book would find a readership among female caregivers. Interestingly, they thought it would—that women, too, would benefit from reading a man’s point of view on the care giving experience.
I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes described in Dementia Diary are the common lot of all who deal with the reality of dementia in a loved one.
This is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It has not spared ex-presidents.
Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonderworkers to understand that they are not alone. My mother would want it that way.
In the pages that follow, her story has been deliberately paced to mimic the unhurried rhythm of her gradual slide into cognitive disability, barely perceptible on a day-to-day basis, but dramatic and frightening when viewed through my own retrospectoscope over the long term.
Some chapters, especially the early ones in the book, may not reveal Mom’s (Minnie Sweet’s) growing deficits to the reader. Some of the anecdotes may seem like the normal foibles of an aging woman rather than a person with a serious dementia. That’s what I thought too.
It’s only when we get to the later stages (or later chapters) that we can see, with hindsight and in the light of her full-blown memory impairment, that the signs and symptoms were there from the beginning.
Keep in mind, also, that the young Minnie Sweet would have been mortified by many of the attitudes and behaviors of the elderly Minnie Sweet. We would have had to explain to her, just as we ourselves had to learn, that the latter was part of the disease process, and not her true personality and character.
Finally, it is my wish that the reader will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual."
Again, next week, watch for the first Chapter: Who Is Minnie Sweet?"
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere badge. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
Next week, watch for the first Chapter: Who Is Minnie Sweet?"
"PREFACE
This is neither a guidebook nor compendium of advice about how to cope with caring for an aging parent or spouse with dementia. There are literally hundreds of such tomes available. My hope, instead, is that this book will become a kind of "portable support group" for caregivers.
Dementia Diary is first and foremost a memoir about what it’s like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.
Those who know my family will recognize that the name I’ve given my mother in this book, Minnie Sweet, is not her real name. Why did I change her name? I have two reasons.
First, even though the narrative is largely autobiographical, some facts have been fictionalized for effect. Second, and more important, writing this memoir has been one of the most emotionally difficult projects I have ever undertaken.
In order for me to attempt it with even a semblance of objectivity, I required an artifact. Using fabricated names was that artifact—it was a distancing technique that enabled me to approach this powerful topic with safety, compassion and humor. So all of the names in this memoir are fictitious, including my parent’s and mine. This worked for me and I hope it works for you.
It is also possible that someone with one of the names I used may read this book. If so, please understand the happenstance involved, and accept my apologies. Any resemblance to any real persons living or dead is purely coincidental.
I also intend for the institutions that served my mother to remain anonymous. She was fortunate to have found her way to some wonderful facilities and programs that, I believe, extended her years and the quality of her life. However, for consistency with the “semi-fictional” nature of this memoir, these institutions are best left unidentified, and any resemblance to actual facilities and programs is purely coincidental.
A word about Mom’s long, slow descent into the opaque fog of multi-infarct dementia: This is a different syndrome than the well-known dementia called Alzheimer’s disease, and it can be caused by frequent “silent” mini-strokes.
Here is the way a physician described the condition to me: the “victim” of such events may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear. While some of these manifestations are unique to this syndrome, all dementias have certain behavioral commonalities that will be recognized in these pages.
I address this book to readers who are actively involved in care giving for loved ones with dementia, to those who have had this responsibility in the past, and to those who expect to face it in the future. Perhaps you will find a nugget here and there with which to identify, and from which to draw some comfort and support.
I also address this book to professionals charged with the care of persons with dementia. Perhaps it will provide a bit of insight into the perspective of a family member attempting to understand and deal with a loved one’s loss of identity, memory, and cognition.
The inspiration for this diary was a talk that I was invited to give to a conference of caregivers sponsored by an adult day care program for people with dementia. The agenda included speeches by a psychiatrist and a geriatrician, followed by a panel of four caregivers reporting on their own experiences.
The purpose was to educate, inform and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.
At first, I didn’t want to make this presentation. I thought it would be an improper invasion of my mother’s privacy to talk about her in a public forum. Besides, it was an emotionally powerful subject and, even though I had done a lot of public speaking, I wasn’t sure I could handle this one in a calm and professional manner.
But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don’t easily do this kind of thing, they said, so “please,” they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.
In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.
I also asked many of the women present if such a book would find a readership among female caregivers. Interestingly, they thought it would—that women, too, would benefit from reading a man’s point of view on the care giving experience.
I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes described in Dementia Diary are the common lot of all who deal with the reality of dementia in a loved one.
This is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It has not spared ex-presidents.
Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonderworkers to understand that they are not alone. My mother would want it that way.
In the pages that follow, her story has been deliberately paced to mimic the unhurried rhythm of her gradual slide into cognitive disability, barely perceptible on a day-to-day basis, but dramatic and frightening when viewed through my own retrospectoscope over the long term.
Some chapters, especially the early ones in the book, may not reveal Mom’s (Minnie Sweet’s) growing deficits to the reader. Some of the anecdotes may seem like the normal foibles of an aging woman rather than a person with a serious dementia. That’s what I thought too.
It’s only when we get to the later stages (or later chapters) that we can see, with hindsight and in the light of her full-blown memory impairment, that the signs and symptoms were there from the beginning.
Keep in mind, also, that the young Minnie Sweet would have been mortified by many of the attitudes and behaviors of the elderly Minnie Sweet. We would have had to explain to her, just as we ourselves had to learn, that the latter was part of the disease process, and not her true personality and character.
Finally, it is my wish that the reader will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual."
Again, next week, watch for the first Chapter: Who Is Minnie Sweet?"
If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere badge. And feel free to post your comments below.
Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com
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