I had a meltdown tonight. I've been having a hard time over the last few weeks, especially. Tonight, I finally just went into the back bedroom and bawled and bawled. Not just an "I feel sorry for myself" kind, but the wretched, painful, grieving, wracked-with-guilt kind.
I've been snippy and irritable for weeks. I don't know when I am going home, the people around me are super-negative and annoying, I have no idea where my life is going, my skin is erupting into cystic acne, I am gaining weight, am very depressed, and to top it off, I can't understand anything my grandmother says to me. Last night, after asking her to repeat herself six times, she screwed up her face and started to cry, mouthing "I am a burden, I am a burden. I hate being such a burden."
I didn't flip out then. I just added that to my Guilty Pile and thought to myself, well...this IS a burden. SHE isn't, but this situation is. Then tonight, as I sat by her, half-watching The Golden Girls, she kept trying to say things that I couldn't understand. Each time, I'd have to mute the TV and have her repeat herself four or five times. My irritation kept building and building, until finally, after about fifteen attempts, I snapped at her saying, "GRAMMA! I CANNOT UNDERSTAND YOU!!!!"
I ran to the back bedroom and cried and cried and cried. It felt like my heart was breaking...it was one of those. I feel better now, but just barely. I wish I knew what I was doing, when I could go home. I wish my family would be supportive and stop leaving everything to me. Above all else, I wished I wasn't such a terrible, awful person...the kind of person who would yell at her grandmother. I wanted to just die.
It was bad. It was. However, those kind of cries are not something to be avoided. To me, they seem like a volcano erupting, releasing the built up pressure building beneath the surface. Tonight, after I got her into bed, I gave Ms. J a real hug and told her I loved her. I meant it. I always mean it, but some nights you just FEEL it. Really, really feel it. Tonight was one of those. I'm glad, because she needed it, I think. I needed it, too.
She needs to know how much I love her, even though this situation is getting to me.
Friday, January 29, 2010
Saturday, January 23, 2010
The Age Of Invisibility by Eissa Stein
Reposted from here.
A couple of weeks ago, as I walked past my favorite coffee shop, I noticed a woman sitting on the bench outside, holding an ice pack to her leg, muttering to herself. Bleeding. Nodding her head and rocking back and forth slowly. The blood had soaked through the cloth she was holding and was now dripping slowly down her leg, seeping beneath her torn, beige stockings. No one stopped. No one noticed. Or, perhaps if they had, they didn't acknowledge. The street was busy and everyone kept moving.
What I could have added, that would explain the solitude, the invisibility, the not being seen when plainly there, was that she was little and old. A bleeding little old woman, all alone on that bench, blood trickling into her orthopedic shoe. I stopped to ask what happened. A couple men, sort of hovering but not quite attached, said she tore her leg open on her metal shopping cart, loaded to the top with assorted bags. Looking, I saw a ragged screw exposed, shin height. They saw her stumble, got her ice, and weren't sure what to do next. She rocked, her lips moving, but didn't answer when I asked how she was. I knelt down by her feet, got in her face and asked, loudly, if she was okay. She snapped out of her reverie and answered yes, she would be fine, she was just waiting for the bleeding to stop. I asked if she wanted to go to the doctor, the emergency room, if there was anyone I could call.
No thank you, she said.
She had no one.
She was all alone.
She was heading to Waverly, which was about 5 blocks south of where we were. She was 100 years old. She lived by herself.
I checked her leg--the bleeding appeared to have stopped. I had her stand and walk a few steps, to make sure it wouldn't start again, gave her instructions to go home, wash the wound, carefully taking her stockings off, and put her leg up for the rest of the day. One of the bystanders offered to walk her there. I watched them move off slowly, her bent over, him twice her size and than ran around the corner to pick Jack up at school.
As I was pushed along by the crowds of moms, sitters, and strollers, I couldn't get this woman out of my mind. Here we were, lavishing time and attention, snacks and playdates, open hearts and attentive ears on these little beings, yet someone at the other end of the spectrum was completely alone. Did she have kids? Had she been married? Did she grow up in this neighborhood? Did she have to walk up 5 flights of stairs with that cart? What did she do when she was sick? Was there anyone at all to check on her? Would she be okay?
I remember Jack bleeding on the street once, as we ran to the emergency room. Everyone stopping to look, asking if they could help. People in NYC are far more kind and generous than we get credit for. But, in that moment, I saw, I recognized, I knew, not for the elderly. Not here. Not anywhere, really. As people get older, as their looks, their jobs, their friends slip away, they lose their power. Their resonance. Their importance. And after awhile, we don't see them.
Perhaps that's one of the reasons we fear aging and fight so hard to keep it at bay. We don't want to be the elderly man checking for the perfect pineapple in the supermarket, but not knowing how, as his wife used to do all the shopping. The widow in the laundry room whose husband died 3 months ago and now has only herself to do laundry for. The woman bleeding on the street, with no one to turn to for help.
We don't want to acknowledge that they could be us one day.
Whew. If only we could all go out into the world with a little more time and compassion for those who don't have what we do. I'm carrying that thought through the holidays. And into 2010.
A couple of weeks ago, as I walked past my favorite coffee shop, I noticed a woman sitting on the bench outside, holding an ice pack to her leg, muttering to herself. Bleeding. Nodding her head and rocking back and forth slowly. The blood had soaked through the cloth she was holding and was now dripping slowly down her leg, seeping beneath her torn, beige stockings. No one stopped. No one noticed. Or, perhaps if they had, they didn't acknowledge. The street was busy and everyone kept moving.
What I could have added, that would explain the solitude, the invisibility, the not being seen when plainly there, was that she was little and old. A bleeding little old woman, all alone on that bench, blood trickling into her orthopedic shoe. I stopped to ask what happened. A couple men, sort of hovering but not quite attached, said she tore her leg open on her metal shopping cart, loaded to the top with assorted bags. Looking, I saw a ragged screw exposed, shin height. They saw her stumble, got her ice, and weren't sure what to do next. She rocked, her lips moving, but didn't answer when I asked how she was. I knelt down by her feet, got in her face and asked, loudly, if she was okay. She snapped out of her reverie and answered yes, she would be fine, she was just waiting for the bleeding to stop. I asked if she wanted to go to the doctor, the emergency room, if there was anyone I could call.
No thank you, she said.
She had no one.
She was all alone.
She was heading to Waverly, which was about 5 blocks south of where we were. She was 100 years old. She lived by herself.
I checked her leg--the bleeding appeared to have stopped. I had her stand and walk a few steps, to make sure it wouldn't start again, gave her instructions to go home, wash the wound, carefully taking her stockings off, and put her leg up for the rest of the day. One of the bystanders offered to walk her there. I watched them move off slowly, her bent over, him twice her size and than ran around the corner to pick Jack up at school.
As I was pushed along by the crowds of moms, sitters, and strollers, I couldn't get this woman out of my mind. Here we were, lavishing time and attention, snacks and playdates, open hearts and attentive ears on these little beings, yet someone at the other end of the spectrum was completely alone. Did she have kids? Had she been married? Did she grow up in this neighborhood? Did she have to walk up 5 flights of stairs with that cart? What did she do when she was sick? Was there anyone at all to check on her? Would she be okay?
I remember Jack bleeding on the street once, as we ran to the emergency room. Everyone stopping to look, asking if they could help. People in NYC are far more kind and generous than we get credit for. But, in that moment, I saw, I recognized, I knew, not for the elderly. Not here. Not anywhere, really. As people get older, as their looks, their jobs, their friends slip away, they lose their power. Their resonance. Their importance. And after awhile, we don't see them.
Perhaps that's one of the reasons we fear aging and fight so hard to keep it at bay. We don't want to be the elderly man checking for the perfect pineapple in the supermarket, but not knowing how, as his wife used to do all the shopping. The widow in the laundry room whose husband died 3 months ago and now has only herself to do laundry for. The woman bleeding on the street, with no one to turn to for help.
We don't want to acknowledge that they could be us one day.
Whew. If only we could all go out into the world with a little more time and compassion for those who don't have what we do. I'm carrying that thought through the holidays. And into 2010.
Caregiving by Gloria Barsamian
Via Huff Post, again. I found a goldmine over there!
Caregiving
Eventually, all of us will end up in a caregiving or care-receiving situation. Apprehension is understandable. But how do we balance our own families, careers, and retirement dreams with the demands of caregiving? How will the emotional toll affect our families and ourselves? Typically families do not address these complex issues until the crisis is upon them -- and before you know it strong feelings such as anger, anxiety, and helplessness can overwhelm you. When you find yourself caregiving for a loved one, not only you, as the caregiver, become stressed. Family members also need more support.
In the early stages of caregiving there are so many decisions to be made. Often people try to avoid stress and become isolated from their friends. During caregiving all of us need a network of people to support us. Caregiving will create many changes in your life and it is very important to take time out for yourself. Go to the gym, walk, join a group like Caregivers.com. The most important thing is to take care of yourself and know when to ask for help.
Caregiving puts us under great strain -- and when we are under strain, we are more apt to lose our temper and become irritable. The caregivers I worked with reported having periods of forgetfulness, withdrawal from friends and partners, and childish patterns of thinking.
We cannot avoid stress or eliminate it altogether, and for that matter some stress is good. But we can recognize that often our own thoughts are the very things that lead to stress during caretaking. After all, if your father is home with help and support and you get a call from him, he may just want to talk to you. Until you determine what his need is at that particular moment, don't panic.
Though caregiving is a multifaceted challenge, it can also offer profound emotional and psychological rewards. With the right perspective, caregiving for a loved one need not be associated with unalloyed dread and anxiety. The key lies in going beyond these anxieties related to caregiving. This means that you must start talking to your loved ones before a crisis arises. Ask them what they want. Share with them your concerns and then they may share theirs. These kinds of early discussions are very helpful in the long run.
Every age group develops mutual responsibilities with each other. Human nature seeks this type of fulfillment, and we as people change all the time in order to feel satisfaction and fulfillment. When we do not feel this sense of transcendence or satisfaction we feel empty. All of us search for transcendence. At some point in time all of us will face the difficulties of providing care for a family member or spouse. Caregiving is a social issue. In caregiving for another who has lived and loved and suffered, there is something that happens so that one extends beyond oneself, which often creates a sense of unity. This happens regardless if one is caring for a child, a parent, or a friend. Intergenerational caregiving will be common in the twenty-first century. Caregivers may feel burdened by their responsibly for unpaid care work. However, they will simultaneously feel enriched by their efforts to promote family relationships.
Our children will simply continue to choose those patterns of caretaking that they experience in the family, either when the deep relationship in caretaking brings satisfaction, or, when this cannot be attained, a feeling of emptiness and dissatisfaction. Despite what society declares, the job of caring for a loved one who is ailing is daunting. Often overwhelmed, overworked, and untrained for the job of caregiving, we feel scared. It is not a storm for some caregivers -- it is a hurricane.
Relative to all other intergeneration pairings in caregiving, the mother and daughter tie, especially for those over 50 years of age, can be the closest. These mothers and daughters have been balancing lives for a long time. Both mothers and daughters have ambitions and needs of their own. People studying mother-and-daughter relationships have shown that in later life both mother and daughter foster their own autonomy. However many do experience conflict and tension. So the truth is that this relationship is one of support and struggle. Caregiving highlights these tensions.
Caregiving
Eventually, all of us will end up in a caregiving or care-receiving situation. Apprehension is understandable. But how do we balance our own families, careers, and retirement dreams with the demands of caregiving? How will the emotional toll affect our families and ourselves? Typically families do not address these complex issues until the crisis is upon them -- and before you know it strong feelings such as anger, anxiety, and helplessness can overwhelm you. When you find yourself caregiving for a loved one, not only you, as the caregiver, become stressed. Family members also need more support.
In the early stages of caregiving there are so many decisions to be made. Often people try to avoid stress and become isolated from their friends. During caregiving all of us need a network of people to support us. Caregiving will create many changes in your life and it is very important to take time out for yourself. Go to the gym, walk, join a group like Caregivers.com. The most important thing is to take care of yourself and know when to ask for help.
Caregiving puts us under great strain -- and when we are under strain, we are more apt to lose our temper and become irritable. The caregivers I worked with reported having periods of forgetfulness, withdrawal from friends and partners, and childish patterns of thinking.
We cannot avoid stress or eliminate it altogether, and for that matter some stress is good. But we can recognize that often our own thoughts are the very things that lead to stress during caretaking. After all, if your father is home with help and support and you get a call from him, he may just want to talk to you. Until you determine what his need is at that particular moment, don't panic.
Though caregiving is a multifaceted challenge, it can also offer profound emotional and psychological rewards. With the right perspective, caregiving for a loved one need not be associated with unalloyed dread and anxiety. The key lies in going beyond these anxieties related to caregiving. This means that you must start talking to your loved ones before a crisis arises. Ask them what they want. Share with them your concerns and then they may share theirs. These kinds of early discussions are very helpful in the long run.
Every age group develops mutual responsibilities with each other. Human nature seeks this type of fulfillment, and we as people change all the time in order to feel satisfaction and fulfillment. When we do not feel this sense of transcendence or satisfaction we feel empty. All of us search for transcendence. At some point in time all of us will face the difficulties of providing care for a family member or spouse. Caregiving is a social issue. In caregiving for another who has lived and loved and suffered, there is something that happens so that one extends beyond oneself, which often creates a sense of unity. This happens regardless if one is caring for a child, a parent, or a friend. Intergenerational caregiving will be common in the twenty-first century. Caregivers may feel burdened by their responsibly for unpaid care work. However, they will simultaneously feel enriched by their efforts to promote family relationships.
Our children will simply continue to choose those patterns of caretaking that they experience in the family, either when the deep relationship in caretaking brings satisfaction, or, when this cannot be attained, a feeling of emptiness and dissatisfaction. Despite what society declares, the job of caring for a loved one who is ailing is daunting. Often overwhelmed, overworked, and untrained for the job of caregiving, we feel scared. It is not a storm for some caregivers -- it is a hurricane.
Relative to all other intergeneration pairings in caregiving, the mother and daughter tie, especially for those over 50 years of age, can be the closest. These mothers and daughters have been balancing lives for a long time. Both mothers and daughters have ambitions and needs of their own. People studying mother-and-daughter relationships have shown that in later life both mother and daughter foster their own autonomy. However many do experience conflict and tension. So the truth is that this relationship is one of support and struggle. Caregiving highlights these tensions.
First we are children to our parents, then parents to our children, then parents to our parents, then children to our children. -Milton Greenblatt, M.
I found this nice article while searching around the Huffington Post.
Just Listen - Maybe Someday is Now
In 1972 while attending medical school, I was working part time doing EKG's at a Jewish Home for the Aged in Jamaica Plains, Massachusetts. It was a clean and nice facility, but like most of its kind, a "waiting station" before people died. So many of the halls were filled with the infirm elderly in wheel chairs, just staring. It was a very depressing sight for someone my age, with much of my life ahead of me.
On one day I came into the room of Mr. Cohen, a spry, energetic and very much alive man in his eighties. He was such a stark contrast to the rest of the residents there, that I said to him: "You seem so full of energy and so full of life. Why are you living here?"
He replied, "I want to live here."
His response seemed incredulous to me and I responded with: "I don't get it. Why would someone like you want to live in a place like this?"
He looked at me and said, "Pull up a chair" and proceeded to try to teach me a lesson about life.
"Nearly seventy years ago, my wife and I escaped the Russia. I can't count the number of times she saved my life and I saved hers. We moved to Boston and I had a good job owning a tailor shop and we raised a great family, but they have their lives with their children. And since I am really okay, I tell them they don't have to go out of their way to visit since I am fine and I am helping their mom," he explained.
"I understand, but I still don't get why you're here," I interrupted.
"Don't be so impatient," he replied, "I'm getting to my point. Five years ago, my beloved Goldie had a massive stroke and she lives in a room two floors above where we are standing. She doesn't speak. Some days she smiles at me when I come in and I like to believe it's because she recognizes me, but I'm probably kidding myself."
"I understand, and I have to be going to my next patient, but I still don't get it. You could visit her and live elsewhere and not live in such a -- if you'll pardon the expression, rather sad -- place," I said rather un-empathically.
"You don't seem to understand," Mr. Cohen explained, "every day I get up, take a shower, get dressed and go to Goldie's room where I clean up the urine she is sometimes laying in, bathe her, change the diaper she wears, dress her and braid her hair the way it was in the old country. Then I sit and read my Jewish newspaper."
"That's very loving, but you could could still live elsewhere and do that," I replied.
"Doctor," he said emphatically, "I like being here, because every day I get to give my Goldie dignity."
"That's wonderful, but you could still live elsewhere," I said, continuing to be puzzled and heading for the door to see my next patient.
Just before I left, Mr. Cohen had a final comment to make. "Doctor, I do it, because she would do it for me. Maybe someday you will get it."
Last week I visited my mom who is living in a place like Mr. Cohen's and whose memory is slipping and last week I started to cut her food.
Maybe someday is now.
First we are children to our parents,
then parents to our children,
then parents to our parents,
then children to our children.
-Milton Greenblatt, M.D.
as quoted in Get Out of Your Own Way
by Mark Goulston, M.D. and Philip Goldberg
Just Listen - Maybe Someday is Now
In 1972 while attending medical school, I was working part time doing EKG's at a Jewish Home for the Aged in Jamaica Plains, Massachusetts. It was a clean and nice facility, but like most of its kind, a "waiting station" before people died. So many of the halls were filled with the infirm elderly in wheel chairs, just staring. It was a very depressing sight for someone my age, with much of my life ahead of me.
On one day I came into the room of Mr. Cohen, a spry, energetic and very much alive man in his eighties. He was such a stark contrast to the rest of the residents there, that I said to him: "You seem so full of energy and so full of life. Why are you living here?"
He replied, "I want to live here."
His response seemed incredulous to me and I responded with: "I don't get it. Why would someone like you want to live in a place like this?"
He looked at me and said, "Pull up a chair" and proceeded to try to teach me a lesson about life.
"Nearly seventy years ago, my wife and I escaped the Russia. I can't count the number of times she saved my life and I saved hers. We moved to Boston and I had a good job owning a tailor shop and we raised a great family, but they have their lives with their children. And since I am really okay, I tell them they don't have to go out of their way to visit since I am fine and I am helping their mom," he explained.
"I understand, but I still don't get why you're here," I interrupted.
"Don't be so impatient," he replied, "I'm getting to my point. Five years ago, my beloved Goldie had a massive stroke and she lives in a room two floors above where we are standing. She doesn't speak. Some days she smiles at me when I come in and I like to believe it's because she recognizes me, but I'm probably kidding myself."
"I understand, and I have to be going to my next patient, but I still don't get it. You could visit her and live elsewhere and not live in such a -- if you'll pardon the expression, rather sad -- place," I said rather un-empathically.
"You don't seem to understand," Mr. Cohen explained, "every day I get up, take a shower, get dressed and go to Goldie's room where I clean up the urine she is sometimes laying in, bathe her, change the diaper she wears, dress her and braid her hair the way it was in the old country. Then I sit and read my Jewish newspaper."
"That's very loving, but you could could still live elsewhere and do that," I replied.
"Doctor," he said emphatically, "I like being here, because every day I get to give my Goldie dignity."
"That's wonderful, but you could still live elsewhere," I said, continuing to be puzzled and heading for the door to see my next patient.
Just before I left, Mr. Cohen had a final comment to make. "Doctor, I do it, because she would do it for me. Maybe someday you will get it."
Last week I visited my mom who is living in a place like Mr. Cohen's and whose memory is slipping and last week I started to cut her food.
Maybe someday is now.
First we are children to our parents,
then parents to our children,
then parents to our parents,
then children to our children.
-Milton Greenblatt, M.D.
as quoted in Get Out of Your Own Way
by Mark Goulston, M.D. and Philip Goldberg
Desperate Housewives Tackles The Subject of Caregiving
Orson delivers a pretty good speech on the frustration he feels about being newly disabled.
Martha Writes About The Elderly
It's a bit generic, but interesting nonetheless. Also copied and pasted below:
The Other Health Care Crisis -- America's Elderly
As the health care bill winds its way through Congress, sparking passions, heated debate and countless news stories, I have been struck by the dearth of discussion about a looming health care crisis: In 2011, the first of 78 million baby boomers will start turning 65. We, as a nation, are utterly unprepared for this rapidly approaching "silver tsunami." We do not have enough doctors skilled in the care of the very demographic group with the greatest overall health care needs. And we do not provide proper support for the more than 48 million men and women who, according to a recent report from the National Alliance for Caregiving, are caring for older family members and friends.
Our population is growing older and living longer. Life expectancy in the United States is at an all-time high of nearly 78 years. The oldest old, those who are age 85 and over, are the fastest growing segment of the population. Yet very few doctors are trained in the care of the elderly. Do you know that there is currently one geriatrician to every 10,000 baby boomers? There are about three times as many cosmetic surgeons, a fact that speaks volumes about how we view aging in this country.
With the increase in the elderly population comes a concomitant increase in informal caregivers. Because around-the-clock home care runs as high as $150,000 per year (not including rent or food) and, depending on where you live, residence in an assisted living facility can easily cost $4,000 per month (none of which is covered by Medicare), more than 75 percent of Americans receiving long-term care rely solely on family and friends to provide assistance. The vast majority of these caregivers are women, most of whom devote an average of 19 hours a week to their caregiving role, often while also holding down a paying job. Many are caring for young children and their aging parents at the same time. And many more, surveys show, have used all of their savings or cut back on their own health care spending in order to cover the cost of caregiving for their relative.
I come to these issues as the daughter of a woman who lived to the age of 93. My mother remained actively engaged in life and healthy nearly to the end. Still, we came to know first-hand some of the issues that need to be managed and the constant worry that shadows every day. What if she falls? What if she takes her medicine twice or, as was more likely with my mother, what if she decides not to take them at all?
My family's experience opened my eyes to the challenges facing countless Americans and their families, and inspired me to found the Martha Stewart Center for Living at the Mt. Sinai Medical Center in New York City. At the Center, which is dedicated to my mother, our mission is to help people live longer, healthier, productive lives even as they grow older. We also aim to develop new models of care for people over the age of 65 that will help our country and the world better meet the healthcare demands of an aging population.
There is an urgent need for innovative ideas and new paradigms -- and no quick fixes. But there are steps we can and should take. First, we must recognize that older adults are an idiosyncratic population with a broad spectrum of needs from the frail and fading Alzheimer's patient to the physically and mentally active senior like, for example, Clint Eastwood who at age 79 is arguably at the height of his creative powers. And we must educate doctors--whether or not they are geriatricians--so they can better understand and serve this demographic. At Mt. Sinai, every medical student is required to do at least some of their training at the Center for Living. No matter what specialty of medicine these doctors ultimately choose, they will be better prepared to work with our rapidly aging population.
Passage of the C.L.A.S.S. Act, a national long-term care insurance program that is currently part of both the House and Senate health care bills, could also make a difference. Introduced by the late Senator Edward M. Kennedy, the C.L.A.S.S. Act (short for Community Living Assistance Services and Support) would allow people to purchase long-term care insurance through payroll deductions and to receive cash to pay for home care, adult day programs, assisted living or nursing homes. The program's fiscal soundness has come under fire from certain quarters. There's no question that new legislation must be well-designed and viable over the long term, but, at the same time, we must not lose sight of a pressing need for solutions that will offer older adults and their families some financial protection.
We're all in this together. Whether or not you care about older people, you will, if you're lucky, be one of them. It's not just a demographic. It's personal -- it's you, your parents, your aunts, uncles, friends and children. We need to do a better job caring for this population -- and supporting those who care for them.
Martha Stewart is the founder of the Martha Stewart Center for Living at Mt. Sinai and Martha Stewart Living Omnimedia, Inc.
The Other Health Care Crisis -- America's Elderly
As the health care bill winds its way through Congress, sparking passions, heated debate and countless news stories, I have been struck by the dearth of discussion about a looming health care crisis: In 2011, the first of 78 million baby boomers will start turning 65. We, as a nation, are utterly unprepared for this rapidly approaching "silver tsunami." We do not have enough doctors skilled in the care of the very demographic group with the greatest overall health care needs. And we do not provide proper support for the more than 48 million men and women who, according to a recent report from the National Alliance for Caregiving, are caring for older family members and friends.
Our population is growing older and living longer. Life expectancy in the United States is at an all-time high of nearly 78 years. The oldest old, those who are age 85 and over, are the fastest growing segment of the population. Yet very few doctors are trained in the care of the elderly. Do you know that there is currently one geriatrician to every 10,000 baby boomers? There are about three times as many cosmetic surgeons, a fact that speaks volumes about how we view aging in this country.
With the increase in the elderly population comes a concomitant increase in informal caregivers. Because around-the-clock home care runs as high as $150,000 per year (not including rent or food) and, depending on where you live, residence in an assisted living facility can easily cost $4,000 per month (none of which is covered by Medicare), more than 75 percent of Americans receiving long-term care rely solely on family and friends to provide assistance. The vast majority of these caregivers are women, most of whom devote an average of 19 hours a week to their caregiving role, often while also holding down a paying job. Many are caring for young children and their aging parents at the same time. And many more, surveys show, have used all of their savings or cut back on their own health care spending in order to cover the cost of caregiving for their relative.
I come to these issues as the daughter of a woman who lived to the age of 93. My mother remained actively engaged in life and healthy nearly to the end. Still, we came to know first-hand some of the issues that need to be managed and the constant worry that shadows every day. What if she falls? What if she takes her medicine twice or, as was more likely with my mother, what if she decides not to take them at all?
My family's experience opened my eyes to the challenges facing countless Americans and their families, and inspired me to found the Martha Stewart Center for Living at the Mt. Sinai Medical Center in New York City. At the Center, which is dedicated to my mother, our mission is to help people live longer, healthier, productive lives even as they grow older. We also aim to develop new models of care for people over the age of 65 that will help our country and the world better meet the healthcare demands of an aging population.
There is an urgent need for innovative ideas and new paradigms -- and no quick fixes. But there are steps we can and should take. First, we must recognize that older adults are an idiosyncratic population with a broad spectrum of needs from the frail and fading Alzheimer's patient to the physically and mentally active senior like, for example, Clint Eastwood who at age 79 is arguably at the height of his creative powers. And we must educate doctors--whether or not they are geriatricians--so they can better understand and serve this demographic. At Mt. Sinai, every medical student is required to do at least some of their training at the Center for Living. No matter what specialty of medicine these doctors ultimately choose, they will be better prepared to work with our rapidly aging population.
Passage of the C.L.A.S.S. Act, a national long-term care insurance program that is currently part of both the House and Senate health care bills, could also make a difference. Introduced by the late Senator Edward M. Kennedy, the C.L.A.S.S. Act (short for Community Living Assistance Services and Support) would allow people to purchase long-term care insurance through payroll deductions and to receive cash to pay for home care, adult day programs, assisted living or nursing homes. The program's fiscal soundness has come under fire from certain quarters. There's no question that new legislation must be well-designed and viable over the long term, but, at the same time, we must not lose sight of a pressing need for solutions that will offer older adults and their families some financial protection.
We're all in this together. Whether or not you care about older people, you will, if you're lucky, be one of them. It's not just a demographic. It's personal -- it's you, your parents, your aunts, uncles, friends and children. We need to do a better job caring for this population -- and supporting those who care for them.
Martha Stewart is the founder of the Martha Stewart Center for Living at Mt. Sinai and Martha Stewart Living Omnimedia, Inc.
Friday, January 22, 2010
Swallow Evaluation...Barium-Style
Ms. J suddenly can't swallow. I don't know what is going on, but we fear that she has had another stroke. We took her to her doctor this week, and a swallow test was prescribed for two days later. It did not go well.
For one, she couldn't swallow the barium.
Two, the male lab tech was a jerk. He asked Ms. L (one of Ms. J's caregivers who had accompanied her that day) "Is she ALWAYS like this?" in a scathing tone, right in front of Ms. J. You don't SAY things like that to a patient, especially an elderly patient who has had multiple strokes and is coming to you FOR HELP. You just don't. God, I wish I would have been there. She is @#$@ing disabled, you freaking horse's arse!
I am currently in the process of finding out who this person was and the name of his immediate supervisor. I can't believe someone would act that way to a helpless little old lady who can not even speak up for herself.
For one, she couldn't swallow the barium.
Two, the male lab tech was a jerk. He asked Ms. L (one of Ms. J's caregivers who had accompanied her that day) "Is she ALWAYS like this?" in a scathing tone, right in front of Ms. J. You don't SAY things like that to a patient, especially an elderly patient who has had multiple strokes and is coming to you FOR HELP. You just don't. God, I wish I would have been there. She is @#$@ing disabled, you freaking horse's arse!
I am currently in the process of finding out who this person was and the name of his immediate supervisor. I can't believe someone would act that way to a helpless little old lady who can not even speak up for herself.
Medicaid: The Latest Installment and Something You Need To Know
On a whim, I tried to call in to the Office of Public Assistance yesterday and reach Betty. She wasn't there of course, but I spoke to a very sweet and HELPFUL individual who helped me find the information I needed. Can you believe that? In a GOVERNMENT OFFICE! She was attentive and patient and NICE! Her name was Paula, and I now love her.
Anyway, what I found out was this: It used to be that once a person signed up for SSI (Supplemental Security Income), their information was sent to the Medicaid office and was processed automatically.
This is apparently no longer the case. I don't know why. I could guess, but I don't want to be that pessimistic.
The only way someone can get enrolled in Medicaid THROUGH SSI is if SOMEONE CALLS MEDICAID immediately afterward. (Again, what in the hell do people do who don't have an advocate?) So, Ms. J was NOT enrolled in Medicaid over these last few months. Instead, her information was sort of..."floating."
We are crossing our fingers that she will soon be officially on Medicaid now that the call has been made. We are also hoping that it won't take the full 45 days of processing time that it usually does. Since she has had SSI for two months, I certainly don't see how it could.
Thank you, Paula. We are hoping and praying!
Anyway, what I found out was this: It used to be that once a person signed up for SSI (Supplemental Security Income), their information was sent to the Medicaid office and was processed automatically.
This is apparently no longer the case. I don't know why. I could guess, but I don't want to be that pessimistic.
The only way someone can get enrolled in Medicaid THROUGH SSI is if SOMEONE CALLS MEDICAID immediately afterward. (Again, what in the hell do people do who don't have an advocate?) So, Ms. J was NOT enrolled in Medicaid over these last few months. Instead, her information was sort of..."floating."
We are crossing our fingers that she will soon be officially on Medicaid now that the call has been made. We are also hoping that it won't take the full 45 days of processing time that it usually does. Since she has had SSI for two months, I certainly don't see how it could.
Thank you, Paula. We are hoping and praying!
Not An Easy Answer
Okay, so. I've been thinking about my last post, and I feel that it is slightly misleading. I created it half in jest, but I do want to make it clear that I know depression and burnout are very real and very serious problems. Sometimes the only thing you can do to stay even moderately sane is something small and simple that reminds you of who YOU are. (And to quote Rabbi Kushner, "Who you work for.")
Now, it's also misleading in the sense that if you have a client or family member such as Ms. J, there is no way on God's green earth that you will be able to do any of those things for more than just a few precious minutes a day, if that. Still, I do urge you to create your own list and to follow through with it. FIND those few minutes. They will make all the difference in the world.
Now, it's also misleading in the sense that if you have a client or family member such as Ms. J, there is no way on God's green earth that you will be able to do any of those things for more than just a few precious minutes a day, if that. Still, I do urge you to create your own list and to follow through with it. FIND those few minutes. They will make all the difference in the world.
Tuesday, January 19, 2010
28 Ways To Allieviate Depression and Burnout
1. Flight.
2. Cats.
3. Naps.
4. Videos of cats/kittens/baby animals on YouTube.
5. Blog.
6. The Beatles.
7. Pride & Prejudice. (Any version will do.)
8. Call Mom.
9. Learn to Crip-Walk. (You are so cool.)
10. Fables.
11. Libraries.
12. Exercise.
13. Sing. (Best if done in solitude.)
14. Create a Facebook page for family member/client.
15. Dance. (Also best if done in solitude.)
16. Pray. Someone/thing out there is listening and does actually "care."
17. Draw.
18. Think about making this experience into a book. (Someone would buy it, right?)
19. Bookstores.
20. Hot, caffeinated beverages.
21. Harass significant other or best friend with barrage of text messages.
22. Read. Novels, Self-Help, whatever. Do what you gotta do.
23. Hot Baths.
24. Humor websites. McSweeney's is a favorite.
25. Eat. (Do be careful with that one.)
26. Make stuff.
27. Remember why you are where you are and why you are needed there.
28. Call Mom again.
I Simply Do Not Understand Medicaid.
I don't. I really don't. I was able to get Ms. J enrolled in Supplemental Security Income (SSI), which I was told would automatically qualify her for Medicaid and thus make her eligible for all sorts of help. Now, you can only imagine how happy I was to find out that we may be able to get some of her care paid for. I think I really did jump up and down. I know for a fact that I screamed like a little girl and waved my hands around Wallace & Grommit-style.
However, here we are a good two months post-SSI approval, and no Medicaid info has come our way. We had a Medicaid nurse visit last week, who told us that we would need to get a waiver to apply for more hours and equipment since Ms. J requires so much care. Okay. Five calls to three separate offices later, I am still none-the-wiser. What would elderly folks do in a situation like this if they have no one to speak for them? I find it absolutely incredible that it is this complicated. Way to go, government bureaucracy.
I don't even know if I fully understand this process, and I would like to think that I'm a reasonably intelligent person. There needs to be a flowchart of some kind showing the different avenues to the right end. Or something. I wish I knew.
Here in this state, it seems to go like so:
1. Spend 5000 hours collecting paperwork for Medicaid. This seems to include, but not be limited to, 2 years worth of ALL bank statements, proof of all assets such as property, cattle, vehicles, jewelry, lock-boxes, savings accounts and any and all gold teeth, nuggets, or krugerrands you might have lying around. This is, of course, to demonstrate an individuals need for assistance. Fine. Whatever. They need documentation. We get it.
2. Spend 5000 hours looking through the government pages in the phone book for anything related to help for the elderly.
3. Spend another 5000 hours on the phone to 5000 more offices trying to figure out what the hell is going on and who to speak to next, only to be sent off to your 5000th voicemail to some woman named Betty.
4. Wait.
5. Imagine spiders spinning webs under and around your unmoving, immobile form as you wait two weeks for Betty to return your calls.
6. Wait longer. They are so busy!
7. Start creating picket signs in your free time. If Betty won't come to you, you'll go to her.
8. Start a one-man protest outside of The Office of Public Assistance in the hopes Betty might condescend to throw a glance in your general direction. ("We need pay! For Ms. Jay!")
9. Be escorted back to your vehicle by an armed guard named Fred. Fred warns you in a jocular tone not to get your panties in a bundle. You hate Fred. And also the word "panties."
10. End up back at home, slumped over in an E-Z chair, letting the cat chew on your arm. Why stop the bloodshed?
Maybe not all of that has actually happened, but you get the idea. Point is, I am on a mini-vacation at Barnes & Noble today because I cannot deal with one more call to this Betty person. One of Ms. J's care-givers is there today, so I sit here on my computer, listening to music, with a stack of kids books and comics nearby. For the moment, I am content.
Betty, if you're out there...you know my number.
However, here we are a good two months post-SSI approval, and no Medicaid info has come our way. We had a Medicaid nurse visit last week, who told us that we would need to get a waiver to apply for more hours and equipment since Ms. J requires so much care. Okay. Five calls to three separate offices later, I am still none-the-wiser. What would elderly folks do in a situation like this if they have no one to speak for them? I find it absolutely incredible that it is this complicated. Way to go, government bureaucracy.
I don't even know if I fully understand this process, and I would like to think that I'm a reasonably intelligent person. There needs to be a flowchart of some kind showing the different avenues to the right end. Or something. I wish I knew.
Here in this state, it seems to go like so:
1. Spend 5000 hours collecting paperwork for Medicaid. This seems to include, but not be limited to, 2 years worth of ALL bank statements, proof of all assets such as property, cattle, vehicles, jewelry, lock-boxes, savings accounts and any and all gold teeth, nuggets, or krugerrands you might have lying around. This is, of course, to demonstrate an individuals need for assistance. Fine. Whatever. They need documentation. We get it.
2. Spend 5000 hours looking through the government pages in the phone book for anything related to help for the elderly.
3. Spend another 5000 hours on the phone to 5000 more offices trying to figure out what the hell is going on and who to speak to next, only to be sent off to your 5000th voicemail to some woman named Betty.
4. Wait.
5. Imagine spiders spinning webs under and around your unmoving, immobile form as you wait two weeks for Betty to return your calls.
6. Wait longer. They are so busy!
7. Start creating picket signs in your free time. If Betty won't come to you, you'll go to her.
8. Start a one-man protest outside of The Office of Public Assistance in the hopes Betty might condescend to throw a glance in your general direction. ("We need pay! For Ms. Jay!")
9. Be escorted back to your vehicle by an armed guard named Fred. Fred warns you in a jocular tone not to get your panties in a bundle. You hate Fred. And also the word "panties."
10. End up back at home, slumped over in an E-Z chair, letting the cat chew on your arm. Why stop the bloodshed?
Maybe not all of that has actually happened, but you get the idea. Point is, I am on a mini-vacation at Barnes & Noble today because I cannot deal with one more call to this Betty person. One of Ms. J's care-givers is there today, so I sit here on my computer, listening to music, with a stack of kids books and comics nearby. For the moment, I am content.
Betty, if you're out there...you know my number.
Friday, January 15, 2010
That Darn Cat
I left a cupboard door open this evening, which H saw as an invitation to go exploring. And that she did. She climbed in and somehow broke a Corningware dish into a million different pieces. I have no idea how she managed that.
Wednesday, January 13, 2010
Oh, Dad.
A conversation that just happened between my father and me, after he came from outside and saw me for the first time all day.
Dad: "Woah, you look terrible! Like, really awful!"
Me: "Uh..."
Dad: "No, really. Those circles under your eyes? SO DARK. Wow. I am in awe."
Me: "Um."
Dad, raising his thumbs: "No, REALLY. Thumbs UP! You are totally detoxing. That is GREAT!"
Me: "Thanks."
Dad: "You know, though...that you're only scratching the surface of your toxin level, though. Sorry to remind you of that."
Me: "..."
And thus concludes a regular conversation that you might hear any day of the week in this household. Good Lord.
Dad: "Woah, you look terrible! Like, really awful!"
Me: "Uh..."
Dad: "No, really. Those circles under your eyes? SO DARK. Wow. I am in awe."
Me: "Um."
Dad, raising his thumbs: "No, REALLY. Thumbs UP! You are totally detoxing. That is GREAT!"
Me: "Thanks."
Dad: "You know, though...that you're only scratching the surface of your toxin level, though. Sorry to remind you of that."
Me: "..."
And thus concludes a regular conversation that you might hear any day of the week in this household. Good Lord.
Kidney Cleanse
My dad has been urging me for quite some time to try this Dr. Schultz Kidney Cleanse, and I decided this week was the time to do it. I rue the decision. RUE! It's really not all that bad, except for the headaches, fatigue, and nausea-inducing tea. The cleanse is five days long. Day one and five allow raw fruits and vegetables. Days two, three, and four only allow diluted fresh juices. And the tea. The horrible, wretch-worthy tea.
The tea probably isn't that abhorrent to most folks, but both the smell and taste remind me of a dieter's tea I used take years ago. It is awful, gut-busting stuff. Anything reminiscent of it makes me want to hurl. Did I mention that six cups must be ingested throughout the day? In addition to a gallon of water and detox tonic? Awesome.
So anyway, I am hungry, but that's not the worst part. I don't even mind the hunger-pains. It's just the lethargy. I would like to just sleep through the next three days, but I cannot do that of course. I had supposed that it couldn't be worse than having to do care-giving while having H1N1. (Indeed it is much easier, though still very unpleasant.) Have I told you about that, yet? I will have to play catch-up and include that one in here.
I am going to keep taking this one day at a time, enjoying the moment each night when I can cross the day off the calendar.
I am finding that I am crankier during this time than I have been in a while. I really feel badly about it. The whole reason I agreed to the cleanse was because of how long this illness had drug on, and I do know from experience that fasting can indeed get rid of a cold or flu faster than just about anything. Also, clean kidneys are supposed to result in clearer skin. Well, we shall see.
The things we do in the name of vanity...and clear sinuses.
The tea probably isn't that abhorrent to most folks, but both the smell and taste remind me of a dieter's tea I used take years ago. It is awful, gut-busting stuff. Anything reminiscent of it makes me want to hurl. Did I mention that six cups must be ingested throughout the day? In addition to a gallon of water and detox tonic? Awesome.
So anyway, I am hungry, but that's not the worst part. I don't even mind the hunger-pains. It's just the lethargy. I would like to just sleep through the next three days, but I cannot do that of course. I had supposed that it couldn't be worse than having to do care-giving while having H1N1. (Indeed it is much easier, though still very unpleasant.) Have I told you about that, yet? I will have to play catch-up and include that one in here.
I am going to keep taking this one day at a time, enjoying the moment each night when I can cross the day off the calendar.
I am finding that I am crankier during this time than I have been in a while. I really feel badly about it. The whole reason I agreed to the cleanse was because of how long this illness had drug on, and I do know from experience that fasting can indeed get rid of a cold or flu faster than just about anything. Also, clean kidneys are supposed to result in clearer skin. Well, we shall see.
The things we do in the name of vanity...and clear sinuses.
Monday, January 11, 2010
Sickly
The reason, I've been gone, is because I've been sick for about three weeks now. Prior to that, I was going nuts with Christmas prep. Not only was I trying to make all the gifts for my own family, but I also had to do gifts for two other families.
Speaking of X-Mas, Ms. J's caregiver and I also took her shopping in the most ridiculous weather (I think the storm dropped about a foot of snow). Still, we managed to get her to the mall in a nearby town and also to a local clothing store. The local store is Ms. J's favorite place in the world to buy gifts. They carry nice clothes and lovely western gifts, so it can often be a one-stop-shop...even though she usually spends WAY too much money in the process.
Anyway, lot of late nights left me with a nasty sinus infection that has since moved throughout the rest of my body. Head, nose, ears, throat...now the insidious thing is resting in my upper lungs. So lame. Oh, AND I had also was the recipient of a full-body detox rash after taking the herbal supplement Lobatium. It was harmless, but it looked simply awful. I was hideous. And itchy. Well, only partially so. For some reason, the rash started at my ankles and was mostly contained in that one spot. It took about four days for it to go away.
I still haven't been to the doctor. I've been taking every natural supplement Dad has provided (including the rash-inducing one) so as to cure the damn thing myself, but it still isn't going away. He thinks it's all keeping me from getting walking pneumonia, but I have my doubts. I am using a neti pot twice a day, filled with a mixture of colloidal silver, Celtic sea salt, iodine, virgin coconut oil and distilled water. I gargle with a similar solution twice a day, morning and night, am taking C, B, D, Zinc, more iodine, Detoxygen, and GABA and Melatonin at night to sleep. Oh, and the cherry on top: a humidifier spiked with peroxide for nighttime. It has bleached both my hair and my eyebrows, something I just noticed day before yesterday. I am slightly redheaded right now.
I know I could beat this thing if I could just get some good sleep. If it isn't stress keeping me awake, it's Ms. J (not her fault!) and her needs. I just can NOT seem to get good sleep for the life of me. The GABA and Melatonin has helped slightly, but not enough to KEEP me asleep. I don't know what to do.
Anyway, so that's that.
Speaking of X-Mas, Ms. J's caregiver and I also took her shopping in the most ridiculous weather (I think the storm dropped about a foot of snow). Still, we managed to get her to the mall in a nearby town and also to a local clothing store. The local store is Ms. J's favorite place in the world to buy gifts. They carry nice clothes and lovely western gifts, so it can often be a one-stop-shop...even though she usually spends WAY too much money in the process.
Anyway, lot of late nights left me with a nasty sinus infection that has since moved throughout the rest of my body. Head, nose, ears, throat...now the insidious thing is resting in my upper lungs. So lame. Oh, AND I had also was the recipient of a full-body detox rash after taking the herbal supplement Lobatium. It was harmless, but it looked simply awful. I was hideous. And itchy. Well, only partially so. For some reason, the rash started at my ankles and was mostly contained in that one spot. It took about four days for it to go away.
I still haven't been to the doctor. I've been taking every natural supplement Dad has provided (including the rash-inducing one) so as to cure the damn thing myself, but it still isn't going away. He thinks it's all keeping me from getting walking pneumonia, but I have my doubts. I am using a neti pot twice a day, filled with a mixture of colloidal silver, Celtic sea salt, iodine, virgin coconut oil and distilled water. I gargle with a similar solution twice a day, morning and night, am taking C, B, D, Zinc, more iodine, Detoxygen, and GABA and Melatonin at night to sleep. Oh, and the cherry on top: a humidifier spiked with peroxide for nighttime. It has bleached both my hair and my eyebrows, something I just noticed day before yesterday. I am slightly redheaded right now.
I know I could beat this thing if I could just get some good sleep. If it isn't stress keeping me awake, it's Ms. J (not her fault!) and her needs. I just can NOT seem to get good sleep for the life of me. The GABA and Melatonin has helped slightly, but not enough to KEEP me asleep. I don't know what to do.
Anyway, so that's that.
Sorry for the Hiatus
Since only one person out there knows this blog exists, I am sure I don't have many heartbroken readers out there. I am glad in a way, since I haven't been on here in about a month. I've been struggling with whether or not to go public with this thing. I don't want to tell family, since there are many intimate details in the postings that might rob Ms. J of her dignity. So, if I do let more people know, I need to go about it in a way that preserves privacy. Or, I may just keep this to myself. I truly think that this experience could be made into a very good book, and this could serve as my journal. (First things first, though. I need to be better about posting. I always think I will remember the details, but one never does.)
So anyway, ONE PERSON OUT THERE (you know who you are), sorry I haven't been around. I will do better.
So anyway, ONE PERSON OUT THERE (you know who you are), sorry I haven't been around. I will do better.
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