Supporting Friends Through Crisis

Margery Pabst — Tue, 07 Sep 2010 23:28:36 GMT

Most of us feel inadequate when a friend is going through a crisis: death, divorce, aging parents, personal health, etc. We often jump to the rescue by providing some form of physical/logistical support like doing errands, making phone calls, and cooking up comfort food. Perhaps our sense of inadequacy is fueled by the sense that we either don’t know how to provide emotional support or we believe that getting close to raw emotions might be dangerous to ourselves and our friends. Nothing could be further from the truth, because if all of your friends and family are avoiding the emotional aspect of the crisis, then the friend you want to help is left to "feel alone" or worse yet, hide what he or she is feeling.

If you are a health care professional, you may feel the sense of inadequacy more than most because your professional training is "to heal", and when you observe friends going through emotional upheaval, it’s very frustrating, And, of course, you want to do something, anything to help!

True friends help each other by asking, listening, and empathizing with feelings. It is an art. that once embarked upon, gets better with time and becomes a satisfying and life enhancing process. So let’s consider some tools that will be helpful to your friends and to you. The benefits will be many, including developing a sense of calm and reduction of stress for friends, You will benefit from a renewed perspective. Running around DOING things will assume a rightful place in the caring and comforting of your friends.

So where do any of us begin to support friends and family who are experiencing an emotional crisis? The key is simply TO BE PRESENT.

To be present is all about giving time to a friend. Showing up with no particular agenda, to just have a cup of coffee or deliver a baked item or to sit for awhile gives space and time for the emotional life of your friend. Your gift of time will say to your friend, "I am here, so say what you want to say." Saying these words can often be less effective than just demonstrating that you have time for him/her. But don’t expect that your friend will share true feelings the first time; it may take a few visits before issues that need expressing come out.

What I often find in these situations is my friend is suffering from some form of guilt--guilt over issues like, "Could I have done more?", "I should have asked more questions." or "If only we had.............". When people feel guilt like this, it’s important that they have a close friend who will not pass judgment but rather just listen.

Once your friend is able to say what emotions he/she is feeling, then try to help by asking some open ended questions that demonstrate that actions often are optional and ambiguous. Often, it’s not clear what to do when the life or well being of someone is at risk. Questions like the following can help ease feelings of guilt and help your friend realize that the course taken was based on the best thought and care at the time.

Questions:

-What other recourse did you have?

-Was a clear cut answer available?

-What positive results were achieved?

What other questions can you think of to help a friend realize that taking on the emotional burdens of "What If’s" after the crisis is over can be a losing game?

Another action to take when helping a friend through emotional crisis is to empathize and recall a time when you were in an situation that didn’t have a clear cut answer. I find that most people, including myself, feel alone and forget that emotional crisis, including feelings of guilt, are universal. Everyone experiences emotion, crisis, guilt, etc., but when we are in the midst of crisis, we think we are the only ones to ever experience emotional upheaval. So CONFIRM for your friend that he/she is not alone, that talking about it and thinking back on the experience can help all of us gain perspective.

Good friends are one of the top blessings of my life. I am sure they are for you too.

About Margery

Margery Pabst is the co-author of "Enrich Your Caregiving Journey", the winner of the "2010 Caregiver Friendly Award". The book has over 130 tips and tools for making the lives of caregivers happier and more enriched. You can find out more about Margery and her book by going to www.pivotalcrossings.com
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Can Eldercare Bring Families Back Together?

Susan Baida — Fri, 03 Sep 2010 10:50:15 GMT

I remember back in the 1970s, when my parents and I lived in a 3-family house along with my paternal grandparents. They lived on the top floor, we lived on the ground floor, and the second floor was rented out to a nice family which became part of our own. Not too far off, a few neighborhoods away, lived my aunt and uncle. In the next town, my grandparents’ siblings lived with their five children close by.

All of us would get together regularly for dinner, Sunday supper, birthdays, and major holidays. I remember the good times, with family members helping one another out and celebrations with lots of laughter and dancing. I also remember the bad times, when fights would break out or a drunk relative would say the wrong thing. There was always a hustle and bustle going on at my grandparents’ home, which was the hub of most of our family activities. It was an idyllic time. We were an extended family.

By the 1980s, things had changed drastically. My parents divorced. My aunt, uncle, and their daughter moved out to California. My father remarried and moved with his new family to Florida. My grandparents stayed behind, but after my grandmother’s health deteriorated, she moved to California to live with my aunt.

By the late 1990s, what was once a tightly bound extended family had completely broken apart, literally scattered to all corners of the country. (I have family in Washington State, too.) While sad, it’s not atypical of what has happened to American families over the last several decades. A rising tide of feminism and waves of economic crises that began in the 1970s were just two factors driving the changes in our culture that couldn’t help but affect family structure.

So, over the last twenty years, even though we stayed in touch with one another, my family no longer enjoyed the close bonds that we had when we were all living within close radius. Lately, though, I’ve noticed a change. Many families are reconnecting in new ways.

Part of it may be social media—reconnecting with long lost cousins and distant relatives on platforms like Facebook. We read their posts and feel as though we know more about their activities and thoughts than we ever did before.

From my vantage point, another big part of it is eldercare. The care of my grandfather, who is now 92 years old and diagnosed with severe dementia, brought my father and his siblings together more frequently and in ways they never imagined, despite the fact they live across the country from one another.

My grandfather’s deteriorating condition and dire need for care forced them to deal with very sensitive issues: his finances, which of his children he trusts most, where he really wanted to live. But the outcome was not good. Ultimately, these difficult conversations broke down the warmth that formerly existed among family members, exposing old hurts and grievances, many of which were still surprisingly raw.

Instead of embracing this opportunity to work together for the sake of my grandfather and deepening their relationships with one another, the situation broke our family apart. Family members are now in court battling one another over finances and conservatorship. This has been going on for so long (the last five years) that I’ve lost track of what they’re really fighting over.

I’m pleased to report that many families face the challenges of eldercare far more successfully. In my work with eCareDiary.com, I hear stories about families and siblings who have gotten it right. I learn about families who embraced their caregiving situation and pulled together for the sake of their loved one. I hear about renewed relationships between sister and brother, restored relationships between a parent and an estranged son, repaired relationships between a cancer victim and her ex-husband.

This is what it’s all about: seizing the opportunity in a caregiving situation to appreciate the preciousness and brevity of life, letting go of old hurts so we can open ourselves to new outcomes with our loved ones.

As I read about the oncoming “silver tsunami,” with a rising population of elders living longer and relying on their families for care, I predict that eldercare will drive another major transformation in family dynamics. My prediction—and hope—is that families split apart by distance or career pursuits will be brought back together through the act of caregiving.

For those ready and willing to unite, here are some tips and tools that can help you as a family begin the process.

Divide and Conquer. When it comes to caregiving, there is usually one point person or leader. That person should prepare a list of tasks needed to be done, and should consider who in the family may be best suited for each task. For example, if help is needed with meal preparation, that task goes to someone who loves to cook. Or have family members choose their own tasks from the to-do list.

Organize a Family Meeting. When critical decisions need to be made about a loved one’s future, it’s best to call a family meeting. One person must be the designated leader; if that’s too complicated for your family situation, then bring in a neutral outside party, like a social worker or geriatric care manager (visit www.caremanager.org for a GCM in your local area). The leader should establish an agenda for the meeting and make sure that everyone is in agreement with the topics to be covered. Topic by topic, the leader should make sure all voices are heard and all concerns are expressed. Every meeting should end with a recap of what was agreed upon or yet to be resolved, along with a list of next-action-steps assigned to specific persons. This closing is critical, because it brings clarity and ensures that everyone leaves the meeting with the same information.

Use Online Management Tools. Online tools, like eCareDiary.com’s free Care Diary, usually include a private calendar, document storage, and social media platform to help families manage and communicate with each other on the diverse aspects of their loved one’s care. Information is stored in one place, so that all those in the circle of care have access to the same information, leaving less room for error or misinterpretation. The information can also be shared with the patient’s healthcare providers and professional caregivers. Online tools help keep long distance family members in the loop on the patient’s progress and care scheduling needs.

This article was posted previously on WomensVoicesForChange.org.

Elder Mediation: New Role in Healthcare

Mon, 30 Aug 2010 00:07:14 GMT

Editors Note: We are pleased to introduce Patti Bertschler as our new Elder Mediation expert who will be a regular contributor to eCareDiary.com (see her bio at the end of this article). Here is an introductory message from Patti, “Many people in heated conflict believe that if the dispute cannot be settled among the parties, their only option is to hire an attorney and sue through the courts. In a series of articles, I will educate about a less-known and more effective way to settle disputes through mediation."

Mediation is a form of alternative dispute resolution in which a neutral (the mediator) helps parties in dispute resolve their differences respectfully and civilly and arrive at a mutually satisfactory solution. In this article, we see how Elder Mediation can be applied in a hospital setting.”

As nurses and professional caregivers, we can all regale ourselves with accounts of family conflicts that seem to reach new heights as they unfold before us. We are amazed by what people say, at their behaviors in front of strangers, and to what levels they will go to hold fast to fiercely held beliefs and positions.

One way of resolving disputes - mediation - is popular in cases of divorce/dissolution, school peer mediation programs, and even business and federal mediation. Less known is Elder Mediation (EM) though it is growing in popularity in various states.

Elder Mediation involves parties sitting down with a neutral third party - a mediator - to hammer out differences involving any variety of issues: estate matters, end-of-life decisions, caregiver schedules to name a few.

Outpatient Options:

Depending on family needs and openness to levels of care, a number of alternatives are available.

Geriatric Assessment: Gives families a "back door" approach when many seniors refuse to see a counselor. This comprehensive examination generally includes a spectrum of medical, psychological, neurological and social data-gathering and gives the family a "big picture" perspective as to the elder's condition.

"My game plan was for mom to see a counselor, because she wasn't sleeping, was losing weight, and cried on the phone every time I called her," said Nancy. "But every time I broached the topic her, she adamantly refused to see 'a young psychobabbler!'" Nancy learned about Geriatric Assessment offered at a local hospital, and was able to get help for her mother's depression and some good referrals for county services her mother needed for some early-onset dementia.

Counseling: Allows either caregiver or elder some one-on-one time to deal with personal issues, work on family relationships, and at times, make decisions as a family as to ongoing needs of the senior. Because of the stigma many seniors perceive counseling to have, counseling is a hard sell to this generation that was taught to "offer it up" or "tough it out."

Amazingly, some seniors DO agree to counseling, usually when they have reached their limit, or find a free depression screening.

Elder Mediation: Gives seniors input into making decisions that affect them and the family. Because the senior is involved in the process (rather than their adult children making decisions for them) there is an 85-90% success rate with compliance to the decisions. (Source: American Bar Association, Elden & Ziebarth, March, 1999).

"We tried so long to have family pow-wows, but dad always stormed out. He felt all we kids wanted was to get him to give up the car and move to a nursing home. What we really wanted was to come up with a game plan that took his needs and our busy work schedules into consideration," offered bakery owner, Jimmy G. "We found out about mediation from a friend of mine, and dad finally agreed to one session. He liked that he felt someone outside the family was hearing what he had to say. We got done in two hours what it took us months of yammering as a family to accomplish."

Specialty Agencies: Most larger cities have an Office on Aging and/or Adult Protective Services. Some privately owned businesses, such as Cleveland-based Quality Care Options, help seniors and their families match senior needs with the best care providers.

Inpatient Options:

"As C.O.O. of Parma Community General Hospital, I (co-author, Pat Ruflin, RN) see so much more conflict now than ever before. The fast-pace of society, the high expectation that healthcare will keep people alive and well much longer, and the fact that most Americans wait until they are in crisis to begin to resolve it, all contribute to this increase."

On the inpatient side, these situations are all too familiar:
Family members becoming hostile to the point of having staff or security intervene due to loud disagreements among siblings regarding their aging mother's care

Adult children burned out by their parent's long history of depression and total dependence on the family. Now Dad is suicidal, and the family wants nothing more to do with him.

Family disputes about end-of-life decisions despite the presence of a valid Living Will.

In all these examples, Elder Mediation offers the best possible outcome for the senior, the family, and the hospital staff. When arguments reach the point beyond which the case manager or patient liaison do not have time or training, mediators can step in.

Forging alliances with local mediation practices which specialize in Elder Mediation (i.e., mediators trained in family mediation and having experience/background in geriatric issues) is a viable option that our healthcare industry must address.

"Because mediators are intended to remain neutral, it makes sense for hospitals not to hire mediators internally. Case workers, social workers and other teams who work with families need to learn that they can refer for Elder Mediation, help resolve family disputes and come to some agreements that allow the family to return to the hospital with decisions that are made either prior to, during, or after the crisis," says local mediator, Dr. John Bertschler of Northcoast Conflict Solutions in Independence, OH. "Staffs are already stressed enough without trying to mediate these highly-charged family disputes."

To locate an Elder Mediator in your area, please visit www.eldercaremediators.com.

About Patti

Patti Bertschler is a clinical counselor, mediator, author, trainer and co-owner of Northcoast Conflict Solution in Seven Hills, Ohio. She is co-author of TRUCE! Using Elder Mediation to Resolve Conflict among Families, Seniors and Organizations (©2004) and Elder Mediation: A New Solution to Age-Old Problems (© 2009). Her booklet 88 Tips for Shy Introverts: Becoming Personally and Professionally Assertive was published in 2010. Patti can be reached via website, www.ncsmediation.com or by calling (216) 236-6200.

Her co-author Patricia Ruflin is a recently retired President and CEO of Parma Community General Hospital.

From the Poorhouse to the CLASS Act

Kim Harke — Tue, 24 Aug 2010 23:11:11 GMT

Growing up, many of us heard our parents invoke a popular expression about “winding up in the poorhouse.” This old time expression is a final vestige of a disappearing cultural memory. In the not-so-distant past, poorhouses were a painful reality for many elderly people.

Colleen M. Grogan, in her article in History & Health Policy in The United States, describes the history of the poorhouses (or “almshouses”). Originally meant for poor people of all ages, the mentally ill, the disabled, and others without family support, the poorhouses eventually became long term elderly housing. The first ones appeared in the early nineteenth century. By the twentieth century, reformers had established orphanages and special institutions meant to rehabilitate the mentally ill and disabled. Rehabilitation was not possible for the chronically ill elderly, so they stayed in the poorhouses.

Physicians and hospital leaders of the time thought the poorhouse was the best place for the chronically ill elderly. These professionals wanted to protect their hospital’s reputations for curing disease. Old age and its accompanying illnesses could not be cured, and so were not appropriate for a hospital.

The locked wards and other horrific conditions of the poorhouses finally caught the attention of activists during the New Deal period. Responding to demands for old-age pensions that would allow the elderly to stay at home and avoid the poorhouse, the federal government established OASI – Old-Age Survivor’s Insurance(Social Security) and the OAA program. Elderly people in public institutions were not entitled to the funds, which was part of the government’s successful effort to close the poorhouses.

Without funding, the poorhouses were forced to close. The problem was that some elderly people still needed institutional care. Many used the OAA money to help pay for private nursing home care. In1950, the Social Security Amendments allowed elderly residents of public institutions to collect the funds.

To avoid a return to the poorhouse model, the amendments required states to set standards for public institutions. New nursing homes were built to accommodate the growing need for them. Institutional care, once shunned as being too much like the old poorhouses, was now a standard model of long term care.

Subsequent legislation, including The Kerr-Mills Act of 1960 and the passage of Medicare and Medicaid in 1965 sought to protect elderly who were not originally poor, but who had become impoverished by their medical expenses. This was a huge problem because many seniors could not obtain affordable private health insurance and were forced to spend their savings on medical care. Grogan points out that this connection between Medicaid and long term care was later reflected in a 1995 speech by President Clinton, in which he described Medicaid as benefiting middle class families.

Did the poorhouse ever really die, or did it evolve into something else? In her book In Sickness and in Wealth, Rosemary Stevens says that the poorhouse functions were taken over by the tax-funded city and not-for-profit hospitals, also called charity hospitals. Many of these institutions were teaching hospitals, and some critics complained that the poor and elderly were being used to teach medical students.

With Health Reform, caregivers of the future have gained the benefits of the Community Living Assistance Services and Supports (CLASS) Act. Like the New Deal-era OAA funds, which were meant to help the elderly remain at home and out of the poorhouse, the CLASS Act benefit could pay for a few hours of home health care per day. It is unclear whether this benefit would be sufficient to allow elders to stay home and out of an institution.

CLASS Act benefits are available to those who have paid into the program for at least 5 years. Premiums are expected to start between $100-150 per month. Critics point out that these premiums could be unaffordable to many people, especially for caregivers who give up their employment to care for an elderly relative.

History shows us that government provision of long term care has never guaranteed all elders their choice of high quality long term care options. In an eCareDiary radio show, health care policy veteran John Mills called for greater advocacy to protect caregivers. Looking beyond government programs may be another part of the answer. We must remember that some version of the poorhouse could appear in the future, if we do not engineer economically sound, comprehensive long term care solutions now.

About Kim

Kim Harke is a health care technical writer specializing in compliance. She holds a Master’s in history from New York University.

When The Caregiver No Longer Cares: Elder Abuse

Rita Mary Dichele — Sun, 22 Aug 2010 21:50:01 GMT

According to the National Center on Elder Abuse approximately 1 to 2 million Americans age 65 or older have been subjected to mistreatment, neglect, injury, and exploitation. Essentially, elder abuse happens quite frequently in non-institutional settings that are familiar environments such as the elder’s own home or a family member’s home. Sadly enough, a great deal of elder abuse is inflicted by a significant person in the elder’s life, the caregiver.

It is difficult to pinpoint the frequency of the abuse since many cases go unreported. Many elders are reluctant to let others know that they are being abused because they feel shame and perhaps even embarrassment that their caregiver is treating them poorly. Furthermore, typically older adults tend to remain private about such family matters. They grew up with the notion that one shouldn’t “hang your laundry out to dry”.

Elder abuse is not just about physical injury. Elder abuse is about neglecting the elderly; financially exploiting the elderly; emotionally abusing the elderly; and sexually abusing the elderly.

Abusers are often credited with providing good care because they are able to skillfully cover up the abuse, often convincing outsiders that they provide the best care for their family member. But looks can be deceiving.

Recently, I had my own personal experience with the distressing consequences of elder abuse. I thought that a woman who attends a class I teach at the community senior center was being abused or at least mistreated. I noticed that Gerri was starting to look haggard and tired and was reluctant to contribute to the discussion. This was not typical behavior on her part. I suspected something was gravely wrong, and I approached Gerri with my concerns.

Gerri eventually admitted that things at home were not good and that she had decided to move out of the house she had bought for her son and his family. The son’s family included not only his wife and two children, but his mother in-law, father in-law, dog, and cat. Gerri had poured all of her life savings into the home because she was told she could live out the rest of her life there. Moreover, her daughter in-law convinced her to pay off her $16,000 credit card debt, promising a lifetime of security in a loving environment.

As time went on, things began to deteriorate for Gerri. Her son and his wife were pressuring her to sign over to them the deed to the house. Fortunately, Gerri knew better. She consulted an attorney for help, but kept from her family and friends the abuse. It was amazing how independent this dependent woman became.

Finally, I knew it was time to call Protective Services at our local Area Senior Access Agency, Elder Services. I knew this because I happened to be on the phone with Gerri when her daughter in-law barged into the room demanding that Gerri sign over the deed. Emotional abuse such as this can in many respects be more damaging than physical harm. Words can hurt and hurtful words can resonate within for a long time.

The report was made to Protective Services and that same day Gerri met with the social worker at my home. Imagine what Gerri was feeling. Her own son was allowing his wife to abuse her emotionally. It is difficult to even describe Gerri’s feelings other than she continued to blame herself and was ridden with shame and embarrassment.

Nevertheless, Gerri was gaining emotional momentum because of me and Protective Services who had now become her advocates. In essence we were validating her concerns, letting her know that she did not have to suffer in silence anymore.

But even as Gerri was becoming more confident, her son and his wife started to neglect her. They informed her that unless she signed over the deed she was not permitted to be in any part of the house other than her bedroom. They stopped feeding her and she was no longer allowed to sit down for family dinner. She was, however, permitted to have one shelf of the refrigerator to store her food. A refrigerator that she had bought for the family. Since Gerri did not drive it was apparent that she did not have the means to get her own food. Meanwhile, the son had bought another refrigerator which was equipped with a padlock that he stored in his bedroom.

Eventually, Gerri did sign over the deed of the house to them but not until after her attorney had lengthy discussions with their attorney. Fortunately, because of Gerri’s own abilities to stand firm and because of her advocates she did receive the fair market value of the house. But there was one glitch. Gerri has to leave the home within six weeks. Meanwhile, her son has not offered to help her find another place to live.

She has not found another home yet and continues to reside in a home where the family dog is treated better than she. The dog is permitted to roam the house and is fed frequently. Unfortunately, Gerri is reluctant to have Protective Services intervene on her behalf for fear of reprisals.

However Gerri’s other three children have now gotten involved. She had shielded them from what their brother was doing. Gerri is planning to move out of the area to be near her other son. They have joined together searching for an assisted living facility.

Gerri’s experience has been a bitter sweet journey. She was emotionally abused, taken advantage of financially, neglected, and abandoned.

Many abused cases go unreported and there are many elders who are frightened in their own home, feeling the insecurity, shame and embarrassment that Gerri felt. The National Center on Elder Abuse has acknowledged that for every case that is reported to the authorities, as many as five cases go unreported. Reporting elder abuse can be done anonymously and can even be reported by calling 911 if one is unfamiliar where to call.

The link below provides more information on how to report elder abuse in your state:

http://www.ncea.aoa.gov/ncearoot/Main_Site/index.aspx

If you suspect elder abuse, take action and please get involved!

Note: The name Gerri is a fictional name so that the identity of the senior is protected.

The Tug of War between Families and Agencies: A Case Manager’s Perspective

Maureen Hildebrand — Wed, 18 Aug 2010 14:44:54 GMT

For the most part, those in the helping professions prefer to work with people who have involved and supportive families - it makes their jobs that much easier. The reality is that family dynamics are often complicated and for a variety of reasons, it can take an outsider some time to locate family members or other concerned party.

An elderly woman has a history of falling. Someone has been in and out of the hospital. An 86 year old woman has been wandering the neighborhood and strangers bring her home. The person next door looks disheveled much of the time and or "an odor" is coming from the apartment. An "eccentric" person collects so much "stuff" that it creates a hazardous living situation.

It's at this point that red flags begin waving when an elderly person living alone shows signs of needing some kind of help. This is when the neighbors call Social Services or law enforcement agencies to come in and assess the situation.

Adult children who were abused or neglected by their parents may get past their hurt enough to step up just enough to ensure their parents are comfortable or have their basic needs met. Some can put feelings aside to provide more hands on care. For others, the damage was too great to have any meaningful relationship.

It's so common to hear that one family member assumes responsibility for caregiving and usually, though not always, it's a woman. While almost everyone experienced in field work would agree that cases involving caring family members have better outcomes than those with little or no involved family, there are some instances when what is perceived as over-involvement can be problematic from an agency's standpoint.

As is true in any profession, there are aides with various skill levels and different personalities. Since personal care is just what the title suggests, it is very important that the aide assigned is a good fit for the person (s)he is caring for. If a family member seems "too picky" or demanding and is specific about how care should be provided, the family may be classified as "difficult to work with".

Sometimes there are misunderstandings due to agencies having to work within the parameters of the Medicaid program. If an aide is asked to perform a task that isn't listed on the care plan or something out of the ordinary occurs during the course of regular duties, a new assessment and care plan may not offer the remedy that was intended to fix the problem when it reoccurs.

I had a situation of an agency reporting a patient's daughter for "not allowing the aide to do her job properly". This was a devoted daughter that was available to train the aides but her involvement was interpreted as interference for the agency. The agency in this case was so afraid of complaints being made that it put the focus on the daughter as causing risk and then referred her to another agency.

Fortunately, the daughter had begun application for the Consumer Directed Program, which suited her mother's and her needs. She had been told that this program "will give you your life back" and I reassured her that it would, based on learning about her life as a caregiver and considering the success with others I have seen.

The majority of caregiving does involve women, but I have witnessed some men that hold the reins. In one instance, negative accusations were made against a son that travelled from out of state to care for his father, who was hospitalized on and off over a three month period. The picture painted of the son was contrary to the reality. Going by verbal description, he was someone to be feared rather than an admirable son taking care of his ailing father.

There was suspicion that the son was abusing his father physically or financially. The apartment was reported dirty and unsanitary; and supposedly, a dog was living in the apartment and dogs weren't allowed. All of the allegations proved false.

In my observation, caregivers in our culture are expected to handle multiple roles and looking after loved ones usually requires bringing in other skilled help. The hands-on care most commonly in demand is under-valued in the workplace, which makes it challenging to attract qualified and dedicated people.

Instead of the tug of war that takes place when a caregiver enlists the help of an agency and wants to have a supervisory role, an understanding of the expectations and limitations between all the parties involved could help people work together amicably. Explaining why something has to be done a certain way could make the difference between a person feeling as if (s)he is being told what to do versus feeling trusted enough to understand and be included.

When to do and when to step back and allow others to share is a delicate balancing act for caregivers. We're programmed for giving, have difficulty asking for help and feel guilty when we do. It's helpful to remember that if we don't take care of ourselves, we won't be good for anyone else. Our needs are important and worthy of our attention.

Maureen Hildebrand has 10 years experience as a Case Manager delivering services to the adult care population in both public and private sectors. She has a Master's in Public Administration with a specialization in government. Maureen is currently working as an Elder Care Consultant based in Putnam Valley, NY and her contact information is seniorservicesspecialist@gmail.com.

Did You Know the JetBlue Flight Attendant is a Caregiver?

Susan Baida — Wed, 11 Aug 2010 11:50:30 GMT

On Monday, Steven Slater, a JetBlue flight attendant, apparently lost his cool and quit his job on the spot in a way that many stressed out employees only fantasize about. He allegedly cursed out his passengers and fled the plane by deploying the emergency slide, not without first grabbing a beer on his way down.

While the news has spurred a flood of humorous response, online debate and empathetic support including a legal defense fund for Slater, there’s no denying that his actions seem to have been brought on by severe stress. He’s now elevated to near folk-hero status despite the fact that he faces 7 years in prison on charges of criminal mischief, reckless endangerment and trespassing.

What many don’t know about Slater is that, on top of his job as a flight attendant which many of us consider one of the most stressful jobs out there, he was also caring for his ailing parents in Thousand Oaks, California. This was reported by the NY Times in the initial coverage on Monday.

According to his former roommate and a neighbor of his parents, Slater was caring for his sick mother while also caring for his father as he was dying of Lou Gehrig’s disease. According to the neighbor, Ron Franz, “It could be the pressure of his mother’s illness, because that’s not the type of behavior or conduct that Steve exhibits. He is a very conscientious, responsible individual.”

From the perspective of family caregiving, I think this incident highlights a massively underexposed issue of CAREGIVER STRESS. Our nation’s elderly over 65+ is the fastest growing segment of the population replete with chronic and long term illnesses. Due to the oncoming “silver tsunami” along with rising costs of healthcare, the responsibilities of their care are falling on their families. Millions of people like Steven Slater are juggling stressful jobs along with the emotional and physical stress of caring for aging parents.

In my work with eCareDiary.com, I hear from so many individuals who have shared personal stories about contracting illness, losing their jobs, giving up their businesses and depleting their life savings over the enormous demands of caregiving. In my own family, my uncle was recently diagnosed with cancer in the midst caring for my 92 year old grandfather. Another woman wrote me about how she was diagnosed with breast cancer while caring for multiple aging relatives.

According to a recent study by the Met Life Mature Market Institute, “Employees in the U.S. who are caring for an older relative are more likely to report health problems like depression, diabetes, hypertension or heart disease, costing employers an estimated average additional health care cost of 8% per year, or $13.4 billion annually." What’s worse, according to the National Alliance for Family Caregivers, many caregivers don’t even outlive the loved one’s they care for.

Setting aside how stressful it is these days to travel by air, as a caregiver to my grandmother for 7 years and then to my father-in-law all while holding down a demanding full time job, I can definitely empathize with Slater. As a caregiver, you are already stressed either from dealing with complicated relatives or from the sheer worrying about your loved one’s health. As a caregiver, when you think you have no energy left, the situation gets worse and your limit gets pushed.

I am not condoning his actions, but as a caregiver who has been pushed beyond my limits, I can certainly understand how Slater “lost it.” In a way, he has become my “hero” because his actions have placed a spotlight on caregiver stress. I’m amazed and annoyed that none of the reports on this incident have honed in on this aspect of his life as if it were just matter of fact that he was caring for a sick mother.

How many of us have felt like Slater, on the verge of “losing it”? How many of us have just wanted to do our jobs but complicated clients or co-workers make it difficult? How many times have we felt like we’ve reached our limit?

I pose these question to caregivers out there to seize the moment and be heard!

My Meter is Always Running!

Jane Meier Hamilton — Tue, 10 Aug 2010 15:55:13 GMT

Have you checked your electric meter lately? I thought not…too many other things for a caregiver to do. Mine is hidden in an obscure spot at the back of the house, out of sight and out of mind. I turn on the computer, television or toaster, and never give it a thought. With the flip of a switch or press of a button I am in business. Electrical energy is always there when you need it; too bad human energy is not like electricity.

My friend, who knows how caregiving has drained me, recently said, “Your meter is always running.” Her message: concern about my Mother is constantly sapping my energy. Like turning on the radio, I sometimes consciously flick on the worry switch, focus on what is happening to Mother and fret about where her dementia will take us. Sometimes I know I am worrying and see its negative consequences.

But there is a second type of worry weighing on my heart, even when I don’t recognize it. This invisible anxiety, like that hidden electric meter, is out of sight and out of mind. Concern about my Mother is now a constant backdrop in my life. Waking up at 3:30AM, disturbed by a half-forgotten dream, I move to the guest room, hoping to reclaim a few more hours of rest before the alarm. The meter is running. Calling my friend at 4:30 Tuesday afternoon, I sob about the hospice nurse’s dire report on Mom. The meter is running. Telling friends and family about Mother’s advancing dementia, I talk about her in almost every conversation. The meter is running.

My friend’s comment figuratively walked me around back, to see my ever-running energy meter. She helped me recognize that both unconscious anxiety and conscious worry are consuming my life-force, minute-by-minute, just as surely as if I had plugged in an old refrigerator in the basement, flipped the switch, walked upstairs and shut the door. I may not be standing there looking at it, but that energy-guzzling old fridge is running, and I am being charged for every kilowatt hour! Though out of sight, the energy-drain it is no longer out of mind. Now I see that I must pay for the unconscious, as well as my conscious concerns. The bill for both always comes due. How can I budget my energies to have enough to care for Mom until the end? I will:

Acknowledge the steady drain of constant concern
Look and listen for signs that “my meter is always running”: insomnia, appetite changes, irritability, and depression, to name a few
Ask close family and friends to help me recognize these signs
Practice all the self-care techniques that work well for me: walking, getting a massage, napping, praying, meditating, talking with friends, writing, cooking, limiting work and volunteer commitments, asking for help.

I know what to do to conserve and replenish my energy. Now, I just need to do it, because the meter will continue to run as long as my Mom continues to live.

How about you? Like me, are you a daughter caring for your parents? Is your meter always running? Consider some of these questions to help you recognize and respond to conscious or unconscious worry:

What are some concerns that invisibly, but incessantly consume your energy?
What signs indicate that your meter is running?
What price do you pay for letting worry silently siphoned-off your energy?
What are some steps you could take to diminish or let-go of your conscious worries?
What are some steps you could take to conserve or replenish your energy?

Jane Meier Hamilton MSN, RN, a nurse for 35 years and family caregiver for 20 years, founded Partners on the Path www.partnersonthepath.org to help professional and family caregivers preserve their health, well-being and capacity to care. Read her book, Journey of a Lifetime: The Caregiver’s Guide to Self-Care (Infinity 2010) to learn sensible, effective ways to cope with your caregiver stress.

What's Your Family Dynamic? Stable, Dysfunctional or Somewhere in Between?

Susan Baida — Mon, 02 Aug 2010 18:22:29 GMT

Of all your relationships, the odds are that you’ll know your brothers and sisters longer than anyone else in your lives. Considering this, you’ll want to do your best to maintain good relationships with them, particularly when your aging parent becomes ill. For better or worse, you will be brought together and called on to interact with one another in ways that you may never have imagined. It isn’t always easy. The stress of caregiving will undoubtedly expose family tensions that may have been long dormant. Or it might create new ones.

One family dynamic that almost inevitably comes into play is the prior relationship among siblings and parents, before the parent became sick or frail. Just because your parent needs care, don’t assume these tensions will be smoothed over for the higher cause. Not encouraging news, for sure—but knowing this can help you enter a crisis situation with awareness and an open mind.

In our work in eldercare, my husband, John Mills, and I have met many different caregivers in diverse family situations. While every family is unique, we’ve noticed a spectrum of family personalities that fall into three main types. Does one of them sound like yours?

1.The Stable Family. This family is relatively happy, and everyone gets along well. The parents seem to have raised the siblings fairly, with equal treatment, and there are no deep resentments. Siblings enjoy each other’s company and gather or communicate regularly with one another. In a crisis situation, they unite quickly and can work together efficiently.

2.The Family with Some Dysfunctions. Most families, I believe, fall into this category. Perhaps some family members differ in personality and in what they value, to the point where they don’t see eye to eye on many things. While they may love one another and be cordial, they don’t necessarily seek out each other’s company. They will pull together in a crisis situation, but may not be able to communicate and act quickly because of past tensions or conflicting egos and personalities.

3.The Dysfunctional Family. In this type of family, the parents might have played favorites or pitted one sibling against another. Rivalries still linger, or there may be difficult personalities who can’t seem to work together. There is typically a communication breakdown, and perhaps some family members refuse to speak to each other. Without outside guidance and assistance, the consequences of family conflict could be devastating here. Some families—my father’s, for example—end up battling each other in court, falling apart, and wasting time, money, and energy that could have been devoted to improving care for the parent.

No matter where your family falls in this spectrum, the stress of caregiving will challenge the strength of your relationships with your parents and siblings. If your relationships were good to begin with and there is a willingness to work together as a team for the sake of the parent, your relationships may transform and strengthen, and your bonds with one another may deepen.

If your relationships were not so great to begin with, you could see this as an opportunity to set aside personal history or resentments and deal with the situation at hand. Focusing on what the needs are, how you can help, and volunteering your time, can improve the situation immensely. Working together for the sake of your parent should be the common goal. It can be a challenge, particularly in a crisis situation, but keeping emotions out of the equation and becoming a contributor are probably the best ways you can help your parent and yourself.

If members of your family are unable to communicate with one another, one of the best solutions I’ve seen is to bring in a neutral, outside party who is an expert at handling challenging family situations. Such services have been immeasurably valuable to many families I’ve met, who were stuck in bitter squabbles over critical decisions. Professionals devoted to this type of family work include:

Family Coaches. These professionals are experienced in helping families work through the issues for the benefit of an aging parent. There is no centralized directory for them that I’m aware of. However, if you Google “family transition coach” along with your city, you may find some in your area. Many consult by phone as well.
Geriatric Care Managers. These are certified professionals with degrees in social work or nursing. To find one in your area, visit www.caremanager.org.

Social Workers. To find a social worker specializing in eldercare, contact your local Area Agency on Aging.
I cannot emphasize enough the importance of families working together when caring for a parent. No matter how dysfunctional the situation, every person can take part and be a contributor. The only prerequisites: the ability to set emotions aside, a willingness to cooperate, and most importantly, an open heart.

In an upcoming article, I'll discuss ways that families can unite and work together, how to organize a family meeting, and how to use new tools to help siblings monitor and communicate with one another about their parents' care.

Healthcare Reform Update – What Takes Effect in 2010

John Mills — Mon, 26 Jul 2010 16:17:41 GMT

eCareDiary has been providing information about healthcare reform and its impact on caregivers since the law was signed by President Obama earlier this year. In an effort to keep our readers informed about the changes, we are providing an examination of what changes go into effect in 2010.

Insurance Reforms Already in Effect

Temporary Early Retiree Program – The law creates a temporary voluntary reinsurance program for employers to help cover early retirees which should help pre-Medicare retirees find affordable coverage. The program ends in 2014 when the expanded coverage provisions come online.

Prohibition of Insurance Rescissions. Insurance rescission is a practice where insurers retroactively cancel an insurance policy, usually due to an unreported pre-existing condition. The new law makes this practice illegal.

Insurance Reforms Taking Effect September 23, 2010

Coverage of Preventive Benefits – The law requires that certain preventive benefits be provided at no cost to the individual receiving the care. Some of the services that will be covered include:

Blood pressure, diabetes, and cholesterol tests
Many cancer screenings
Counseling from your health care provider on such topics as quitting smoking, losing weight, eating better, treating depression, and reducing alcohol use
Routine vaccines for diseases such as measles, polio, or meningitis
Flu and pneumonia shots
Counseling, screening and vaccines for healthy pregnancies
Regular well-baby and well-child visits, from birth to age 21

Elimination of Pre-existing Conditions for Children. The law eliminates the ability of insurers to deny coverage to children on the basis of a pre-existing condition. For adults, the ban on pre-existing conditions goes into effect in 2014. High-risk insurance pools (see below) will be available to help them gain coverage in the meantime.

Coverage of Adult Dependents Up to Age 26. The law requires that insurers permit dependents to remain on health insurance policies up to age 26, regardless of whether or not they are full-time students. Most insurers currently cover dependents not in school only up to age 19 and those still in school up to age 23.

Prohibiting Lifetime Benefit Caps. The law prohibits lifetime caps on health insurance benefits. Many health insurance policies currently limit the total amount insurance policies will pay out.

Temporary High-Risk Insurance Pools. The law creates high-risk health insurance pools for people who have pre-existing conditions and have been denied coverage due to those conditions. To qualify, they need to have been uninsured for at least six months. Monthly costs will be based on those for general health insurance population. Perhaps most important: the monthly fees will not be able to vary more than 4-to-1 based on age. Out-of-pocket costs are capped at $5,950 for an individual and $11,900 for a family. The pools sunset in 2014, when the pre-existing condition ban goes into effect and Health Insurance Exchanges come online.

Medicare Changes

Improvements to Medicare Prescription Drug Coverage - The law provides a $250 “bonus” to all people in a Medicare Prescription drug program in 2010 that hit the “doughnut hole,” the coverage gap that currently begins at $2,830. It also begins closing the “doughnut hole” in 2011 and completely eliminates it by 2020.

Medicare Advantage Changes – The law changes the way that Medicare Advantage plans are paid by bringing payments into line with the costs of the regular Medicare program. These payment changes may impact the benefits provided under these plans so review plans carefully at renewal time.

Small Business Assistance

Tax Credit for Small Businesses to Pay for Insurance. The law includes $40 billion in tax credits to help small businesses pay for health insurance for their workers. The credits are available to employers with fewer than 50 workers and will cover 35 percent of health insurance premiums in 2010. This figure will rise to 50 percent of premiums in 2014.

Health Insurance Information Portal

The law requires the federal government to setup an Internet portal where people can review plans currently available for individuals and small businesses. Starting October 1, 2010, the portal will be fully functional and will show both benefits and rates for insurance policies sold in all 50 states. To learn more, visit www.healthcare.gov.

What’s Coming Next

These changes are just the beginning with the bulk of the new benefits and subsidies for health insurance being phase in between 2011 and 2014. eCareDiary will continue to provide updates as more parts of this law take effect.

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