The Survival of the Caretaker

When Marie had to face the reality of her father's Alzheimer's she knew she was also facing a decision she likened to "choosing between jumping off a cliff or getting hit by a bus."

"It was terrifying, the idea of relinquishing his care to the hands of total strangers, many of whom would not be paid well, many of whom I knew hated the work. But he was deteriorating so quickly and I was incapable of caring for him myself. He would get up in the middle of the night and wander around the neighborhood. Once we found him standing and staring at the mailbox down the street when we went to walk the dog. He couldn't remember where he lived. Another time, the police brought him home. And we were lucky because they wouldn't have even known who he was or where to bring him if we hadn't given him an i.d. tag to wear around his neck.

"My choice is really no choice."

It is not an uncommon position for millions of baby boomers in this country and an increasingly disturbing reality for people all over the world. Elder care is fraught with perils no matter where you live.

In South Africa, more than 100 sick patients were left without food and other necessities for days because of financial mismanagement of a state-subsidized nursing home (April 9, 2008, The Herald Online). This, even though 80% of their pensions were being siphoned for the care. No one has yet been held responsible.

In Zambia, a report (July 22, 2008) came out that called elder abuse a "cancer" as abuse was rampant, widows were being forced out of their homes, and parents were falling victim to violence when falsely accused of witchcraft. 

In Toronto, a formal declaration was issued to draw attention to the plight of the elderly suffering from abuse, holding that violence against the aged is as serious a social issue now as violence against women and children.

In 2002 a convention was held by the Committee on the Elimination of Discrimination Against Older Women in which they urged that special attention be focused on the needs of older women.

In 2008, the UN marked June 15th as a world-wide day to highlight elder abuse.

In 2005, the Peruvian Ministry of Women and Social Issues presented a report on domestic violence in the elderly in Peru after which the government launched the National Program against Domestic and Sexual Violence. Between January 2002 and May 2008, more nearly 7,500 elderly people were treated for abuse.

Closer to home in Connecticut, nursing homes were exposed as failing to meet basic safety guidelines.

The elderly clearly don't have it easy, no matter where they live. There are issues with cruelty, medical neglect, poor sanitary conditions, and verbal abuse. But the universally resonant complaint seems to be loneliness.

A study released in 2006 in the Journal of Advanced Nursing (Vol. 17: 1, 43-51), showed that loneliness in adults living in Stockholm, Sweden, increased steadily over time as people aged up until 90 at which point it leveled out. Those living with a partner were significantly less likely to report feeling lonely, but interestingly having children seemed to make no difference. Most importantly, they found that those who experienced poor health also felt lonely and that there was a significant correlation between the two in both directions-those who were ill were lonelier and those who were lonely tended to fall ill.

The statistics seem to bear them out in a review of the scientific and popular media. Coping with elder care and isolation will become a major concern for a vast number of adults at some point in their lives. 

According to some, this is a critical problem because the structure of the home has changed. Women who once were primarily caring for family members at home are now leading active lives in business. Communities are more anonymous and fragmented. In urban settings people commonly report living in apartment buildings where they do not know their neighbors, even after living there for years.

Families are more fragmented. They are now separated by enormous distances whereas once the majority lived if not in the same community or neighborhood at least in the same state. "Who takes care of mom or dad?" has become the question of middle-aged children. Does it fall to one? To all? To a nursing home? Which one? When is it the right time to make that decision?

As author and expert on elder care, Susan L. Sandel, wrote "America has traditionally had difficulty accepting and dealing with non-productive segments of society. We typically identify a problematic population (orphans, the mentally ill and the elderly), create institutions for their treatment, and then denigrate the institutions for inhumane or inadequate care when they do not meet the public's expectations. All of the people associated with the institutions - agencies, caregivers, clients and relatives - are imputed with the guilt and humiliation resulting from the public's disappointment. No other population has so consistently fallen victim to this tradition than America's sick elderly, their families and their caregivers."

Some people would argue that the crucial point is Ms. Sandel's last one. The aged are not the only ones affected by geriatric disease, depression, and isolation. There are numerous mental health issues facing their caretakers as well, who, although they may initially approach the task of caring for a parent or friend with great faith and energy, over time that zeal may wane.

With the exponentially increased demands on her time, her finances and her emotional resources, the caregiver is the silent sufferer when it comes to illness of any kind, physical as well as mental. All attention is naturally focused on the patient. Schedules are restructured. Lives are imbalanced. Emotions are neglected so that a loved one may get the treatment or help he or she needs.  Eventually the caregiver begins to fray around the edges. She becomes irritable, fatigued, impatient. The more she suppresses her feelings, the more she (and often does) experience physical complaints that are also left untreated: back pain, headaches, circulatory issues, colitis.

In addition, she may be facing the loss of someone she cares about deeply. This is by necessity compounded by the normal fears we all have about our own mortality.

According to one Albuquerque social worker, this is all part of the process. "And when these issues come up, as they must, if she does not have the support and insight to face them, she may in fact wonder what is wrong with her, how she is failing. But, in truth, it's not unlike the message we hear on the airplane before it takes off. In the event of an emergency, put your own oxygen mask on first before you try to help anyone else. It's good advice."

According to experts in stress, there are ways to address these issues and professionals advise the caregiver to follow some simple rules:

1. Rest. Rest. Rest.

If you're loved one requires a lot of attention at night and your sleep cycle is being interrupted, get help from others. If that means calling the insurance provider for a home health aide or fanning out some of the responsibilities amongst other family members, do so. Sleep deprivation is one of the more potent problems facing caretakers and often has quite a bit to do with being afraid to relinquish control.

2. Diet.

This is the first thing to go and the simplest thing to correct.  Bad nutrition depletes the entire system and quickly. If you're not sure of what you need or what you're missing, see a nutritionist. But there are fairly obvious guidelines: no processed foods, no sugars, lots of water, keep it as organic as possible and avoid excessive alcohol intake.

3. Exercise.

Maintain your posture. Learn yoga. Get a massage.  Go for a hike. Regular exercise is critical. Without it, we get depressed and lethargic. A yoga home video is available by calling 1-800-722-7347.

4. Stay Social.

Keep your friendships alive. Go out. Stay involved in the community.  Keep your hobbies alive. Stay interested and invested in your own life to the extent that you possibly can. It may seem selfish at first, but tending to your social needs is a critical component of caring for others. It is impossible to be kind and resentful at the same time.

5. Get counseling.

This is very important in order to deal with the varied and sometimes conflicting or confusing emotions that arise when you are caring for someone who is chronically ill.

6.  Have a spiritual context for your life.      

It gives us meaning, comfort that there is a benevolent plan, that you have a protector, no matter what the circumstances. One man, who was clinically dead for about 30 minutes, had an OBE (out of body experience) and since then, with that experience in his heart, he has not feared death or the fluctuations of life. He says he knows there is more.

7. Cultivate inner stillness.

Breath work and meditation is incredibly valuable and literally changes the way we think and process sensory input. In a study done by Dean Ornish, M.D. Professor of Medicine at the University of California at San Francisco,  on heart disease he was able to show that meditation actually reversed arteriosclerosis when done twice daily for twenty minutes. Hypnosis is useful to cultivate stillness and simultaneously processing the strain of caretaking. By doing so, we can develop an internal witness, a transcendent "I", refocusing attention from external to internal self and giving ourselves back control over inner workings. Hypnosis also actively utilizes unconscious imagery which in turn creates a cascade of biochemistry.

8. Find a community.

According to Dr. Ornish, one of the greatest sources of stress and pain in this country is the pervasive isolation. And experts currently believe that pain is very much a product of perception. When we have nothing else to focus on, we are drawn ever deeper into what hurts. The lack of a sense of community and mutual support can be one of the harshest pressures for the caretaker.

9. Maintain balance.

You can only do what you can do and no more. Remember you deserve kindness and love as much as your loved one. Keep your perspective.

10. Remember the simple things to make your life easier.

Is speaking to your elderly relative impossible due to some hearing loss on their end? There are amplifiers for phones if hearing aids are not possible. Communities often provide help with meals, day centers or clubs where the elderly can meet socially.

11. Pet therapy.

It is well-documented that the right pet for the right person can be enormously healing and helpful. If the elderly person is capable of providing proper care for the animal, in return it can offer love, companionship and a renewed focus on life. One of the most debilitating parts of growing older in this country is feeling useless. Having someone or something need our attentions can restore our vitality. Charitable institutions like Help-the-Aged have a free information sheet on pets to help you and your parent or loved one make a choice.

Judith Acosta is the co-author of The Worst Is Over: Verbal First Aid to Calm, Relieve Pain, Promote Healing and Save Lives (2002), She is a licensed psychotherapist, hypnotherapist and crisis counselor.
When Marie had to face the reality of her father's Alzheimer's she knew she was also facing a decision she likened to "choosing between jumping off a cliff or getting hit by a bus."

"It was terrifying, the idea of relinquishing his care to the hands of total strangers, many of whom would not be paid well, many of whom I knew hated the work. But he was deteriorating so quickly and I was incapable of caring for him myself. He would get up in the middle of the night and wander around the neighborhood. Once we found him standing and staring at the mailbox down the street when we went to walk the dog. He couldn't remember where he lived. Another time, the police brought him home. And we were lucky because they wouldn't have even known who he was or where to bring him if we hadn't given him an i.d. tag to wear around his neck.

"My choice is really no choice."

It is not an uncommon position for millions of baby boomers in this country and an increasingly disturbing reality for people all over the world. Elder care is fraught with perils no matter where you live.

In South Africa, more than 100 sick patients were left without food and other necessities for days because of financial mismanagement of a state-subsidized nursing home (April 9, 2008, The Herald Online). This, even though 80% of their pensions were being siphoned for the care. No one has yet been held responsible.

In Zambia, a report (July 22, 2008) came out that called elder abuse a "cancer" as abuse was rampant, widows were being forced out of their homes, and parents were falling victim to violence when falsely accused of witchcraft. 

In Toronto, a formal declaration was issued to draw attention to the plight of the elderly suffering from abuse, holding that violence against the aged is as serious a social issue now as violence against women and children.

In 2002 a convention was held by the Committee on the Elimination of Discrimination Against Older Women in which they urged that special attention be focused on the needs of older women.

In 2008, the UN marked June 15th as a world-wide day to highlight elder abuse.

In 2005, the Peruvian Ministry of Women and Social Issues presented a report on domestic violence in the elderly in Peru after which the government launched the National Program against Domestic and Sexual Violence. Between January 2002 and May 2008, more nearly 7,500 elderly people were treated for abuse.

Closer to home in Connecticut, nursing homes were exposed as failing to meet basic safety guidelines.

The elderly clearly don't have it easy, no matter where they live. There are issues with cruelty, medical neglect, poor sanitary conditions, and verbal abuse. But the universally resonant complaint seems to be loneliness.

A study released in 2006 in the Journal of Advanced Nursing (Vol. 17: 1, 43-51), showed that loneliness in adults living in Stockholm, Sweden, increased steadily over time as people aged up until 90 at which point it leveled out. Those living with a partner were significantly less likely to report feeling lonely, but interestingly having children seemed to make no difference. Most importantly, they found that those who experienced poor health also felt lonely and that there was a significant correlation between the two in both directions-those who were ill were lonelier and those who were lonely tended to fall ill.

The statistics seem to bear them out in a review of the scientific and popular media. Coping with elder care and isolation will become a major concern for a vast number of adults at some point in their lives. 

According to some, this is a critical problem because the structure of the home has changed. Women who once were primarily caring for family members at home are now leading active lives in business. Communities are more anonymous and fragmented. In urban settings people commonly report living in apartment buildings where they do not know their neighbors, even after living there for years.

Families are more fragmented. They are now separated by enormous distances whereas once the majority lived if not in the same community or neighborhood at least in the same state. "Who takes care of mom or dad?" has become the question of middle-aged children. Does it fall to one? To all? To a nursing home? Which one? When is it the right time to make that decision?

As author and expert on elder care, Susan L. Sandel, wrote "America has traditionally had difficulty accepting and dealing with non-productive segments of society. We typically identify a problematic population (orphans, the mentally ill and the elderly), create institutions for their treatment, and then denigrate the institutions for inhumane or inadequate care when they do not meet the public's expectations. All of the people associated with the institutions - agencies, caregivers, clients and relatives - are imputed with the guilt and humiliation resulting from the public's disappointment. No other population has so consistently fallen victim to this tradition than America's sick elderly, their families and their caregivers."

Some people would argue that the crucial point is Ms. Sandel's last one. The aged are not the only ones affected by geriatric disease, depression, and isolation. There are numerous mental health issues facing their caretakers as well, who, although they may initially approach the task of caring for a parent or friend with great faith and energy, over time that zeal may wane.

With the exponentially increased demands on her time, her finances and her emotional resources, the caregiver is the silent sufferer when it comes to illness of any kind, physical as well as mental. All attention is naturally focused on the patient. Schedules are restructured. Lives are imbalanced. Emotions are neglected so that a loved one may get the treatment or help he or she needs.  Eventually the caregiver begins to fray around the edges. She becomes irritable, fatigued, impatient. The more she suppresses her feelings, the more she (and often does) experience physical complaints that are also left untreated: back pain, headaches, circulatory issues, colitis.

In addition, she may be facing the loss of someone she cares about deeply. This is by necessity compounded by the normal fears we all have about our own mortality.

According to one Albuquerque social worker, this is all part of the process. "And when these issues come up, as they must, if she does not have the support and insight to face them, she may in fact wonder what is wrong with her, how she is failing. But, in truth, it's not unlike the message we hear on the airplane before it takes off. In the event of an emergency, put your own oxygen mask on first before you try to help anyone else. It's good advice."

According to experts in stress, there are ways to address these issues and professionals advise the caregiver to follow some simple rules:

1. Rest. Rest. Rest.

If you're loved one requires a lot of attention at night and your sleep cycle is being interrupted, get help from others. If that means calling the insurance provider for a home health aide or fanning out some of the responsibilities amongst other family members, do so. Sleep deprivation is one of the more potent problems facing caretakers and often has quite a bit to do with being afraid to relinquish control.

2. Diet.

This is the first thing to go and the simplest thing to correct.  Bad nutrition depletes the entire system and quickly. If you're not sure of what you need or what you're missing, see a nutritionist. But there are fairly obvious guidelines: no processed foods, no sugars, lots of water, keep it as organic as possible and avoid excessive alcohol intake.

3. Exercise.

Maintain your posture. Learn yoga. Get a massage.  Go for a hike. Regular exercise is critical. Without it, we get depressed and lethargic. A yoga home video is available by calling 1-800-722-7347.

4. Stay Social.

Keep your friendships alive. Go out. Stay involved in the community.  Keep your hobbies alive. Stay interested and invested in your own life to the extent that you possibly can. It may seem selfish at first, but tending to your social needs is a critical component of caring for others. It is impossible to be kind and resentful at the same time.

5. Get counseling.

This is very important in order to deal with the varied and sometimes conflicting or confusing emotions that arise when you are caring for someone who is chronically ill.

6.  Have a spiritual context for your life.      

It gives us meaning, comfort that there is a benevolent plan, that you have a protector, no matter what the circumstances. One man, who was clinically dead for about 30 minutes, had an OBE (out of body experience) and since then, with that experience in his heart, he has not feared death or the fluctuations of life. He says he knows there is more.

7. Cultivate inner stillness.

Breath work and meditation is incredibly valuable and literally changes the way we think and process sensory input. In a study done by Dean Ornish, M.D. Professor of Medicine at the University of California at San Francisco,  on heart disease he was able to show that meditation actually reversed arteriosclerosis when done twice daily for twenty minutes. Hypnosis is useful to cultivate stillness and simultaneously processing the strain of caretaking. By doing so, we can develop an internal witness, a transcendent "I", refocusing attention from external to internal self and giving ourselves back control over inner workings. Hypnosis also actively utilizes unconscious imagery which in turn creates a cascade of biochemistry.

8. Find a community.

According to Dr. Ornish, one of the greatest sources of stress and pain in this country is the pervasive isolation. And experts currently believe that pain is very much a product of perception. When we have nothing else to focus on, we are drawn ever deeper into what hurts. The lack of a sense of community and mutual support can be one of the harshest pressures for the caretaker.

9. Maintain balance.

You can only do what you can do and no more. Remember you deserve kindness and love as much as your loved one. Keep your perspective.

10. Remember the simple things to make your life easier.

Is speaking to your elderly relative impossible due to some hearing loss on their end? There are amplifiers for phones if hearing aids are not possible. Communities often provide help with meals, day centers or clubs where the elderly can meet socially.

11. Pet therapy.

It is well-documented that the right pet for the right person can be enormously healing and helpful. If the elderly person is capable of providing proper care for the animal, in return it can offer love, companionship and a renewed focus on life. One of the most debilitating parts of growing older in this country is feeling useless. Having someone or something need our attentions can restore our vitality. Charitable institutions like Help-the-Aged have a free information sheet on pets to help you and your parent or loved one make a choice.

Judith Acosta is the co-author of The Worst Is Over: Verbal First Aid to Calm, Relieve Pain, Promote Healing and Save Lives (2002), She is a licensed psychotherapist, hypnotherapist and crisis counselor.