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The act of caregiving and attempting to be a caregiving advocate for a loved one can be frustrating when staff at hospitals, care communities, rehab centers, medical offices, home health, and in other health care positions are less than helpful. Caregivers and care receivers have needs that are not the same, need that that require individual attention and problem solving.

Some care professionals go through the motions, are less than attentive, and are unresponsive to care recipients and family caregivers. Professional care staff working in care communities become “facilitized” meaning that staff lump residents into categories much like stereotyping:

  • the demented (they’re only going to get worse there is nothing we can do),
  • the depressed (this is just how they are and by the way their disease is progressing),
  • the problem residents (watch out for him or her)

Staff fails to take the time or to make the effort to look at residents as individuals. Staff takes the easiest route possible. A lack of training is often the reason for poor care and other issues that occur.

Management fails to train staff which is the crux of many of the issues in the care industry. Admittedly staffing is a challenge. Finding employees who care is challenging. Finding employees who will show up for work can be problematic. The care industry is and will continue to be an industry of some caring professionals and an industry of others who view care as a job not a vocation or a profession.

How can family caregivers or care receivers advocate for themselves?

Don’t Accept Less Than Good Care.

  • Physicians tell me that my clients are old as if my client doesn’t deserve proactive and good care. A physician yesterday mentioned hospice care as the way out of my client taking care of her mother. Shocking but true.
  • Many physicians are insensitive, they fail to see reasons for care declines, they lump clients into the same categories, they have moved beyond the ability to care and have to be pushed to do their jobs.
  • Care staff in communities fall into ruts like robots and perform the same routines day in and day out. They take the easiest path to completing their work. Why walk a patient to the dining room when I can put the patient in a wheelchair, faster but not the best for the resident who should walk to remain mobile.
  • Care staff are untrained in customer service, untrained in responding appropriately to family concerns, and untrained in the proper care for residents. The younger generation prefers to play with their cellphones rather than to care for residents as if work is interrupting their personal life.
  • Because of this lack of training staff, are desensitized to changes in health or condition. Residents decline in heath or die.

My advice, speak up, advocate, be the squeaky wheel. Never give up. Never accept poor care. Find someone who will listen. Find someone who will help. Retain the services of a care advocate if necessary. Do not allow care for yourself or a loved one to be sub-standard. Receiving good or better care takes work and effort.

Read my book, The Caregiving Trap: Solutions for LIfe’s Unxpected Changes for practical tips and suggestions.

The post Caregiving: Does Anyone Care? appeared first on Pamela D Wilson | The Caring Generation.

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Caregiving and daily life routines that result in the development of a care plan may prove to be a fascinating subject when caring for elderly parents. How many of us are in a routine that seems normal but when viewed from the outside may be considered abnormal or at best unusual? How many of you remember the movie, Young Frankenstein, and the discussion about the brain that was implanted from a person named Abby Normal that was really labeled abnormal? Flashback.

As a care navigator, one of my responsibilities is to develop a care plan for my clients, many of whom are elderly. In simple terms, a care plan is a plan relative to daily activities, care in the home, medical care, and other activities that relate to well-being and maintenance or improvement of health.

Activities that some caregiving families see as normal for an elderly parent may, from an outside view of a care manager, appear to be a previous enabling activity that did not have positive results. For example, imagine a parent who frequently refused to attend medical appointments because dad said he wasn’t feeling well. Not feeling well. What better reason to see the doctor? Mom in this situation, rather than argue or battle with dad, simply acquiesced and did not take dad to the medical appointment.

What might then happen when dad is an elderly parent of 80 years old and mom has passed on, leaving dad’s care to his adult children. How successful will the adult children be in convincing dad to go to the doctor? Dad’s response to his daughter suggesting a medical appointment, “if mom didn’t make me go, neither will you.”

Enabling behavior may also be considered behavior that sets up a situation for future failure. This is no different than creating a spoiled child. When the child grows up, the behavior is ingrained and is extremely difficult to change. Why should I clean up after myself? Mom did my laundry. Mom cleaned my room. Mom folded my clothing. Heaven help the wife, unless she is an enabler, who marries this man.

What about an elderly parent who has been depressed since the death of a child, 20 years earlier? I remember my mom saying to me, “parent’s aren’t supposed to lose children” when my 29 year old sister suffered an accidental death by way of a tragic car accident.

Life in our family home changed for nearly 2 years. No holiday celebrations. The removal of my sister’s dog because the dog reminded my parents of my sister. These 2 years were not a pleasant time for a 17-year old who did not understand the grief process of my parents. I grieved the loss of my sister but in a very different way.

Is normal an elderly parent suffering from depression that began 20 years ago and still continues as the result of the loss of a family member? How many families would view this as normal? One would wonder why family members didn’t stage an intervention. Denial? Fear? Thinking it best to leave mom or dad to grieve? A 20-year depression is not normal.

Imagine a care manager coming into these two situations. Both families would be shocked that the care manager insists that dad see the doctor and that mom see a psychiatrist. Heaven forbid that the care manager upset the apple cart and start making changes to attempt to ensure that the parents receive care.

Protestations usually rise from some but not all of the parent’s adult children. I often hear, “thank heavens” someone has the courage to make a change” or “who gives you permission to take control and tell mom or dad what to do.” Family responses are a mixed bag of Abby Normal.

The responsibility of a care manager is to create and implement a care plan. The goal of a care plan is positive progress that usually requires intervention or change resulting from looking at a situation from an outside perspective.

Many times family members are too close to see the seriousness or decline of a situation. Too close to the forest to see the trees. How many of us lose perspective on our own lives and need a friend to take us aside and have a talk with us?

Care planning for elderly parents can be challenging especially when there is disagreement between adult children. Even more challenging is when there is a medical power of attorney making changes that are opposed by family members. This happens more than one might imagine and is normal in my experience..

Regardless of the person who is attempting to care plan for an aging parent, the situation may present a challenge. When in doubt, contact a care manager for assistance. When in doubt, check out my book, The Caregiving Trap: Solutions for Life’s Unexpected Changes for suggestions and ideas about caring for elderly parents.

The post Caregiving: Care Planning To Address the Abby Normal appeared first on Pamela D Wilson | The Caring Generation.

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Family caregiver dysfunction is created and complicated by early life family relationships. Sometimes, the complication results from the care recipient who denies that care may be needed. Other times, the complication results from adult children who don’t see eye to eye about the care being provided for or requested by a an aging parent. Or there may be other longstanding complicating factors. Regardless of the situation, the family must come together to support caring for an aging parent.

Sometimes coming together requires the involvement of an independent professional serving as court appointed guardian or power of attorney. Absent of this as a solution, how do dysfunctional families become functional caregivers for the benefit of the care of a parent?

How do these situations arise and how can they be resolved? I wish there was a simple answer. It’s very likely that many of these caregiving issues formed years ago when the adult children were children. My book, The Caregiving Trap: Solutions for Life’s Unexpected Changes relates many of these situations. One of the challenges is that no matter how old the child, the parent may still see the grown child as a child. Meaning, who is this person (the child I raised) giving me orders and making ultimatums?

Early Childhood Issues Remain Years Later

How many adult children still hold family grudges because they didn’t receive the train set or the pink hula hoop from a parent? Today, the same parent wants the adult child to become a caregiver. Why should an adult child give a parent what he or she wants when the parent failed to do the same? My book trailer video called Remember When, illustrates the challenges of this situation.

Unfortunately it’s many of these small slights over the years that result in fractured caregiving relationships when a parent needs care. There is no easy answer. My recommendation is that adult children work in a non-emotional manner to negotiate the need of a parent. Again, I realize this is easier said than done. In many families there is one adult children whose behavior goes to extremes and results in ongoing drama.

How many of you know a drama king or drama queen? They exist in many families. This may be the child who had to go to extremes when younger to garner any type of attention from a parent. The dramatic behavior continues today. Drama gets attention. However, drama also results in irritation by others who prefer to act in a rational, fact-based manner. This is one example of a dynamic that results in dysfunctional family relationships.

Aspects of Dysfunctional Family Caregiving Relationships

Other dysfunctional family relationships result from parents who coddled a child. Today this child who is an adult, fails to hold down a paying job. This child moves in and out of the parent’s home because he or she is dependent on the financial and emotional support of the parent. There are also children who at age 50, have never left the parent’s home. This child may live in the basement and rarely be seen. This child never held a job, made a meal, or cleaned house because the parent enabled the child to be helpless. How does the parent believe this child will survive when the parent is gone? A common response, “I didn’t think about that. I’m going to live forever.”

There are situations of childhood abuse, where a parent abused a child who lives in a world of victim mentality. This child constantly reminds everyone what was done to he or she by mom or dad. This child is powerless to take responsibility for any aspect of life. Problems never result from his or her actions but from the actions of everyone else involved. How many times have you heard, “I’m this way because of mom or dad.” “Mom or dad ruined my life.”

In my book, The Caregiving Trap, there is information about initiating family meetings and assigning caregiving roles to family members with the goal of moving dysfunctional situations forward. Working in a non-emotional manner to develop a plan for a parent offers the greatest hope to managing family dysfunction. Yet, all family situations need a team leader. Are you ready to step up and accept this responsibility?

It’s time to move forward with a plan and to hold all family members accountable for participation. Yes I hear you — easier said that done. Believe me – it is possible!

 

The post Caregiving: Managing Family Caregiver Dysfunction appeared first on Pamela D Wilson | The Caring Generation.

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Hospital dumping of dementia patients is the new normal. Twice in the past 30 days I have had two clients sent to the emergency room for delusional and unsafe behavior. Both individuals had a diagnosis of dementia. Both times a medication review was requested because in addition to the diagnosed urinary tract infections both individuals exhibited generally unsafe and agitated behaviors.

One client attempted to stab a caregiver in the leg with a knife, another physically harmed a family member. With dementia these behaviors are more common than one might expect.

In prior times, geriatric psychiatry units would accept individuals with dementia for medication management that is much better implemented in a more controlled environment. Medication management means that the present prescribed medications are reviewed in addition to other  medications that may be helpful in managing agitated or unsafe behaviors.

Imagine being a person with dementia who feels and acts like you are out of your mind and the medical profession refuses to help you. 

Today, due to insurance regulations, only individuals with mental health diagnosis may be admitted for treatment into a geriatric psychiatry unit. Individuals diagnosed with dementia who are exhibiting mental distress do not qualify for treatment under health insurance in a geriatric psychiatry unit.

One of the challenges in going back through an individual’s health history, especially an older adult, is that a mental health diagnosis was viewed as a negative stigma. Thus, even if an older adult of today had mental health issues in their younger years, this rarely has been diagnosed, let along placed as a diagnosis in a medical chart. This is the question you will be asked if you attempt to have a loved one placed in a geriatric psychiatric unit – is there a diagnosis related to mental health?

The lesson: if anyone in your family experiences challenges due to mental health, have the diagnoses placed in the medical chart. If not, and this person has a diagnosis of dementia in later years, it may be difficult to receive treatment.

Medical treatment for behaviors is is a present challenge and a challenge for the future as the number of individuals diagnosed with dementia increases and behavioral challenges occur. If the medical profession refuses to treat demented individuals with behaviors who will?

Who in the insurance industry or the government decided that persons diagnosed with dementia should be DENIED TREATMENT? Who in the insurance industry or the government decided that behaviors of persons with dementia should NOT be treatable for geriatric psychiatry benefits using a health insurance benefit?

The reality is that not all medical professionals working in hospitals — or even primary care physicians — are trained to care for persons diagnosed with dementia. In one of the emergency room visits, the emergency room physician and social worker told me, “we’re not equipped to deal with this type of situation (dementia).”

If medical professionals, especially in hospital emergency rooms, are not equipped to treat and respond to individuals diagnosed with dementia what does this say of the gap in healthcare today and in the future?

If the medical profession and insurance companies fail to pay attention to this segment of the population today, how will the ever increasing number of individuals yet to be diagnosed in the future with dementia receive treatment?

Will individuals diagnosed with dementia be dumped out of hospitals into the streets or into the homes of loved ones who are even less prepared to care for their family members?

A case manager at another hospital told a client that he needed to take his father home and find a care community because the hospital was unsuccessful in making this transition for the family. Again, if medical professionals in a hospital are not successful in finding a community placement for an individual, how can the hospital expect a family member with fewer skills and knowledge to be successful?

Professionals with the skill, background and ability to work with individuals diagnosed with dementia and to advise their families represent a specialty niche of professionals within the aging industry. If you are a person diagnosed with dementia or a family member seek out assistance rather than having your loved one being treated with less than dignity and caring. Plan ahead for expected and unexpected situations.

If you are interested in planning for your care or the care of a loved one, pick up a copy of my book, The Caregiving Trap: Solutions for Life’s Unexpected Changes.

The post Dementia Patients Dumped from Hospital Emergency Rooms appeared first on Pamela D Wilson | The Caring Generation.

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Achieving a work-life balance is challenging for many individuals depending on life-stage: some employees may be raising children, others experiencing health issues of their own, some supporting adult children with the care of grandchildren, or caring for aging parents. Companies experience financial costs related to a lack of presenteeism at work meaning the degree to which an employee is present and attentive to the work at hand or the degree to which the employee’s attention span wanders in favor of worry or focus on family and personal concerns. Other challenges experienced include lost time due to employee illness or caregiving for children or other family members. Poor health costs the U.S. economy billions of dollars each year in lost productivity due to issues of presenteeism and illness.

Caregiving due to the number of family caregivers around 34 million and increasing daily who are mainly women, will pose an unexpected and significant financial effect on company employee retention and management in the coming years. Many human resource departments have not fully considered the impact of family caregiving but rather focus on compartmentalized subject matter that includes the impact of children on working employees, the costs of employees with poor health, retirement planning, and so on.

In my opinion, most companies fail to realize the larger opportunity of family planning that encompasses raising children and navigating different life-stages that involve the diagnosis of chronic disease, caring for aging parents, and retirement. Some companies outsource these areas to employee assistance providers who offer counseling and support in different areas but who rarely relate the effects of one area upon another.

Many women who are family caregivers take time off work to raise children or to care for parents. Some totally opt out of the workforce for several years placing these women at risk during retirement years because of decreased retirement savings and lower social security payments. The majority of caregivers report that they have no other option. The majority of older adults in nursing homes near end of life are women without the financial resources to pay for care at home or in a retirement community. Most women in nursing homes at end of life rely on the government program of Medicaid to pay for their care. Is this really the unconscious path we want for women who dedicate years to being a caregiver?

Health, good or poor, is a significant indicator of the quality of life in later years. Many companies support healthcare by offering insurance, providing options for exercise, smoking cessation, weight loss, and other ancillary services. The missed opportunity is that few, if any, companies relate health to chronic disease and becoming a care receiver or a caregiver.

Forty five percent of Americans have at least one chronic disease.  If you have a diagnosis of heart disease, high blood pressure, diabetes, a breathing condition like asthma or COPD, cancer, or mental illness you have a chronic disease. By the time an employee reaches the age of fifty it’s likely a diagnosis of at least one chronic disease has occurred. The stress of work and daily life contributes to chronic disease. Employees diagnosed with chronic disease today who care for aging parents are likely to become the care recipients of tomorrow. These same employees may struggle with their own health issues in order to remain employed.

If you knew today how heart disease advances and affects life forty years from now would you be more attentive to actions you might take today to change a path of poor health, illness and care receiving? Maybe—maybe not. If you knew today the costs of care when older, for example that the average assisted living community costs $60,000 a year, might you be more attentive to planning for retirement, taking good care of your health, or investigating long term care insurance?

Because companies give little consideration to education about life-stage planning there is a significant lost opportunity to educate and support employees to think about the short and long term effects of health, financial, and legal planning which are common components of many company benefit plans. What are companies doing to support family caregivers—very little or not enough?

Might general discussions about caregiving and care receiving support employees to give more consideration to health and well-being? The medical community treats health conditions; there is usually no discussion about the long term effects of chronic disease or what it’s like to provide or to require care on a daily basis to complete simple activities of daily living like bathing, dressing, eating and reminders to take medications. It is this type of daily care that takes employees out of the workplace to become full-time caregivers for an aging and frail parent.

Most family caregivers hide caregiving responsibilities from their employers because they don’t want to be viewed as an employee with a problem. Many employed in the human resource field have little personal experience with caregiving thus caregiving never becomes a focus of an employee plan or support program. Nor would these human resource individuals know how to discuss caregiving and the related effects with employees passing through this life-stage.

My own experience at the time of the death of my mother was with a supervisor who had experienced parental caregiving issues; he was very understanding and compassionate and as a result my loyalty to him and the company grew by leaps and bounds. My experience at the time of the loss of my father and brother within the span of 12 months was very different. My supervisor at the time was cold and impersonal and had a complete focus on my career development when I was grieving the loss of two immediate family members and was doing my best to make it through each day.  The reality is that employee caregivers sometimes need special care and attention.

What might employers to do support issues of caregiving? Rather than having segmented human resource or benefit programs employers should talk more about life-stage planning for raising children, helping adult children with grandchildren, experiencing health issues, caring for parents, and retirement. By linking these aspects employees might be better aware of and prepared for the role of caregiving. The subject of caregiving should be routinely discussed so that employees in this role might feel more comfortable approaching supervisors to discuss options.

Flexible schedules for caregivers willing to make up hours missed during the workday to attend to aging parents would be beneficial. While I realize this is not always possible, having an open door policy about discussing “what if” might help employers retain employees who might otherwise opt out of the workforce to caregive.

I know many individuals who have given up careers to care for parents and then later regret the decision because of the challenges of becoming re-employed at a much lower position and salary than when the individual left the workforce. The financial aspects are also rarely considered. What if employers explained the long term financial risks associated with leaving the workforce to caregive?  Would this make a change in how the employee might look at working an altered schedule?

The lack of knowledge about the role of caregiving and the related costs to employees who choose to opt out of work is significant; not to mention the costs related to aging parents who may not have saved enough in retirement to pay for their own care. Why caregiving has not become a more significant subject for corporate attention is an unknown. With the number of caregivers expected to increase substantially in the coming years, companies choosing to take a wait and see attitude might experience a tsunami of unexpected events. After all no one expects to become a caregiver or a care receiver.

The post The Corporate Conundrum: The Unexpected Effects of Chronic Disease and Family Caregiving appeared first on Pamela D Wilson | The Caring Generation.

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Caregiving, family, and the holidays; all emotional words depending on one’s perception of combining all three together. For some caregiving is an emotionally draining act. For others being with family during the holidays (or any time during the year) stirs up the same emotions. For others caregiving and family, in small doses, works perfectly.

What is it about the holiday season that we like and dislike? Some say the commercialism of having to buy presents. Why not make a present rather than buy a present. My parents loved to garden. Mom made canned tomatoes, pickles, and strawberry jam. This led me to make and gift jars of plum jam one holiday when we lived in a home that had the most fabulous plum tree in the front yard that gave off hundreds of plums one summer.

Why not donate to charity and give this as a gift? Honestly isn’t there a point in life where we don’t need more stuff sitting around our houses? What if you asked (well, maybe told) your family and friends that you are not buying presents this year but will donate to a charity and ask each of your family members pick a charity?  Donations are always needed by charities struggling to fund programs.

Caregiving Family Holidays

I attended a family wedding this weekend and had the pleasure of seeing my brother, sisters, nephew, niece, cousins and other extended family and friends. We shared memories of growing up as children with our parents and grandparents who have all passed away probably much like our parents and grandparents did when they got together. We complained about the loud music at the wedding dance, probably also a lot like our parents did when they had to listen to our music. How funny that life repeats itself generation after generation.

What can we do during the holidays to ensure that these memories and stories pass from generation to generation?

  • How about sorting through all those old photos and marking them with the names of the persons in the photos before they end up in some box or on a computer disk after the death of a loved one whose memories hold the names of the individuals in the photos?
  • How about asking grandma for that favorite recipe? One of my regrets is not asking grandma for her coffee cake recipe. I don’t know how she made it but it was one of my favorites. At the time I was too young to even think to ask for the recipe.
  • How about contacting a friend or family member you haven’t spoken to in some time? I woke up yesterday remembering the birthday of a friend and I sent an email and received a nice response.
  • How about talking about caregiving in the perspective of, if this happens what would you want?
  • How about sharing life’s lessons? I remember grandma as being an especially gracious person. Each time we visited her as we were leaving, she would say, “thank you for coming to see me.” How often do we receive that type of thank you? Probably not often enough.

Caregiving, family, and the holidays. Let’s find a way to make all three a little happier, more joyful, and a little less stressful this year.

Read about The Realities of Family Caregiving

The post Caregiving, Family, and The Holidays appeared first on Pamela D Wilson | The Caring Generation.

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By Pamela D. Wilson, CSA, MS, BS/BA, CG

Caregiving is more often than not an unexpected event. Many caregivers have a daily routine caring for a loved one. Some caregivers continue working; some stay at home to caregive. Most important is the caregiver’s ability for self-care including attending to healthcare and medical needs. Care-receiving is also an unexpected and unwelcome event; who wants to admit that he or she needs care?

Caregiving for a loved one is stressful and the physical and emotional effects longstanding. Caregivers experience anxiety, depression, declines in health, and a number of other conditions as the result of the role of caregiving. If you find the effects of caregiving difficult to believe the example I share is Christopher Reeve and his wife Dana. Christopher was injured in a horseback riding accident and was cared for by his devoted wife and family for many years. After Christopher passed in October 2004, his wife, Dana, was diagnosed with lung cancer the following August—never having smoked a cigarette. Dana passed away in March of 2006.

What happens to caregivers who already have chronic diseases including a prior diagnosis of cancer? Should individuals already diagnosed with a chronic disease be more cautious about their health when caring for another person?

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I recently consulted with a wife who had knee replacement surgery only to learn at the time of surgery that her breast cancer returned; the only treatment available was palliative chemotherapy. The wife came to me because she was the caregiver for her husband diagnosed with Alzheimer’s disease and she wanted to make a long term plan for his care.

After receiving the news that her cancer had returned the plan changed from being her husband’s long-term caregiver to planning for her husband’s care without her in his life and making plans for her own care. It was evident that the stress of caring for a loved one with Alzheimer’s disease was taking its toll on my client in addition to the emotional stress of learning about a terminal diagnosis of cancer with a defined time limit. For this couple the experience of being diagnosed with cancer and the role of caregiving and care-receiving posed similar but sometimes opposite experiences.

The many effects of caregiving—while often not immediately life threatening—have much in common with the effects of a cancer diagnosis and treatment. Individuals with cancer experience declines in health, episodes of anxiety, fatigue, loss of appetite and body changes, sleep problems, confusion and feelings of overwhelm, anger, and sadness.

My discussion with this woman revolved around practical considerations for bill paying and identifying a companion for her husband’s safety as well as a caregiver to provide general support on days she would not be feeling well after chemotherapy treatments. Even more practical discussions were held about his and her end of life care, legally responsible parties to serve as medical and financial power of attorney, cremation plans, and how to discuss her advancing condition with a husband diagnosed with Alzheimer’s disease who likely would not understand.

The options of receiving in home care versus moving to a care community where her husband might adjust and make new acquaintances that would support him after her death was a timely and important subject. At least she would be comforted to know where her husband would live and who would provide for his care after her passing. Caregiving is challenging when one person requires care, however when both spouses require care and the death of one spouse is imminent the challenges seem to rapidly multiply.

Some spouses are unable to have these all important discussions and are at a loss to make plans. This emotional distress results in overwhelm that makes planning difficult; many individuals in these situations feel immobilized. Children may or may not be supportive or available depending on proximity to parents and the hustle and busyness of their own lives.

In the case of this couple, the husband was the one who managed the finances and was now experiencing an inability to organize and comprehend the documents that arrived in the mail. Agreeing to allow his wife to act in the role of financial manager was damaging to the husband’s self-esteem and he struggled with comprehending that he was no longer able to complete this activity with the ease experienced prior to his diagnosis of Alzheimer’s disease.

Years ago, I became the guardian for a woman whose husband died from cancer and failed to make plans for her care, assuming that somehow, someone would care for her after his death. Through the court system I was appointed to be the person who coordinated and made certain that she received care. Fortunately her husband did leave sufficient financial resources to support his wife’s care in the lifestyle they were accustomed to prior to his passing.

I imagine that the last several months of his life were overwhelming, attempting to care for his wife and for himself. There were no in home caregivers at the time that I became involved and I can only assume that due to his health and the corresponding pain and symptoms that making it through a single day was considered a success.

For cancer patients, discussion of managing pain and symptoms through practical methods of medications and alternative treatments like massage, relaxation, and other techniques is important. Many caregivers, not facing a terminal diagnoses, experience anxiety: feelings of being tense or nervous, a rapid heartbeat, sweating, sudden feelings of doom, trouble breathing and butterflies or nervousness in the stomach. Individuals with cancer often experience anxiety. Medication, exercise and self-care are mandatory for both the care recipient and the care receiver.

Fatigue is a common among individuals diagnosed with cancer as well as caregivers working 24 hours a day 7 days a week to care for loved ones. Monitoring nutrition, planning daily activities and identifying others to help is important to managing care situations. Naps are also beneficial but not too much so that that one is awake all night. Caregivers often sleep lightly as they are listening for their loved one to wake from a sound sleep. Individuals with cancer and other medical concerns often have trouble falling asleep, wake up and are unable to fall back asleep and sleep for short periods of time.

Loss of appetite and changes in the body are common: weight loss, weight gain, constipation, nausea and vomiting affect individuals diagnosed with cancer. How comforting might it be to have an individual to help with the practicalities of grocery shopping and preparation of meals to support a topsy-turvy stomach? Caregivers also experience similar events as the result of caregiver stress and exhaustion.

Confusion, memory loss, and an inability to focus are also common to caregiver and individuals experiencing cancer. Being a care recipient and a caregiver has similar stressors of different natures. Care recipients worry about their own health and well-being as well as sometimes feeling that their care might be a burden for family members. Caregivers worry about loved ones and mourn the loss of free time, spending time with friends, and dream of living a life without so many complications and daily responsibilities.

Cancer and other chronic and life threatening diseases change the life of individuals seemingly overnight and result in the role of care receiver. These life changing events also result in the role of caregiver. It is important to understand that the effects of conditions leading to a need for care are similar to the experiences of caregivers caring for a loved one. In both roles compassion, understanding, patience, and grace support positive relationships and allow individuals to make practical plans for care needs today and in the future.

Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM.  In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.

Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, will be available on October 6, 2015 through all major bookstores as well as on PamelaDWilson.com. You can find her on YouTube, Facebook, Twitter, and Linked In.

The post What happens when the caregiver is diagnosed with cancer? appeared first on Pamela D Wilson | The Caring Generation.

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Caregiver burden represents the emotional, physical, and financial aspects and responsibilities of providing care and support for an ailing family member. This is a subject rarely discussed because most caregivers would be embarrassed to show feelings of exhaustion, frustration, or anxiety; believing that caregiving is something that one is obligated to do for a loved one. The idea of the caregiving trap is also controversial, especially among caregivers who are filled with guilt. What “good” caregiver would ever admit feeling trapped by caregiving for a loved one?

Many caregivers and care receivers—if they are honest– admit to feeling trapped. Caregivers are trapped by real-life example that include meal preparation, medication reminding, bathing, dressing, housekeeping, grocery shopping, changing bed linens, laundry, maintaining the household, sorting mail, paying bills—the list of caregiving tasks is endless. For a short period of time providing a great amount of care is sustainable. For longer periods, realistic discussions and plans are necessary in order for caregivers to maintain physical and psychological well-being.

Care receivers also feel trapped by the idea of needing care. Many do not wish to burden family but have no other choice especially when finances cannot support the private payment of care, whether at home or in a care community. Caregiver burden extends to both sides of caregiving.

In situations of crises, when there are limited options, parents readily accept help and support from children. Many adult children begin by committing small amounts of time and quickly realize that any free time that existed has disappeared and been replaced with a long list of projects for parents. Parents experience no significant changes in their lives except that their lives are easier and more comfortable; projects and activities they were previously unable to complete are finally being accomplished by helpful adult children.

Caregiver Burden

What a relief that groceries are in the refrigerator, the house is clean, bills are paid, and medications are placed in daily reminder boxes. The lawn is mowed, and snow is shoveled. Life could not be better for parents who exert minimal effort to manage their daily lives. Having the help of adult children in caregiving situations is like receiving assisted living support without leaving home, and better yet, the help is free. This situation represents the caregiving trap.

Adult children who allow their lives to become unbalanced in favor of nonstop caregiving activity rarely stop until experiencing some sort of physical or emotional breakdown. It is easy for caregivers to become overinvolved. Most important is to find balance between becoming overinvolved or detached, as these extremes result in the dysfunctional relationships experienced in many caregiving families.

Important if you are a caregiver is to listen and to hear the concerns of others regarding your well-being. Many caregivers are trapped in a self-created situation of providing care and later realize that this arrangement cannot continue, yet the caregiver has no idea how to change the situation without conflict or disagreement, so the caregiver delays and delays and delays having a conversation with a parent. Not until the role of caregiving has become physically and emotionally draining, when family relationships are suffering, when projects at work are uncompleted and supervisors are commenting about poor job performance do caregivers realize that change is not optional but mandatory. A discussion must occur.

Caregiver Burden Cont. How many of us find ourselves in this situation of being trapped but in other parts of our lives. We believe that we want something—a new house, a new job, stuff—and then feel trapped by the financial support required to maintain or fund the stuff. Traps are common in life. Looking in from the outside, the solutions are easy. Stop or change aspects of life that are creating the trap. From the inside we feel frozen, stuck, or immobilized because our brains fail to see a way out of the trap that we created for ourselves. Fear of changing the dynamic results in this great unknown. Interestingly, the same unknown faced by the care recipient who also resists any type of change in the caregiving situation.

Caregivers attempt to discuss the situation with loved ones through vague mentions of concern, hoping that parents will intuitively pick up on stated concerns; they do not. One day out of frustration, the caregiver’s mouth engages before the brain and words are said that cannot be retracted. The parent responds with a verbal volcanic eruption, expressing a lack of appreciation for all that has been done, and turns the tables by saying, “I don’t need your help. I’m fine living here by myself. I’ll take care of myself.” The caregiver feels rejected, angry and unappreciated.

Parallels exist in our approach to managing daily life as well as the responsibilities of caregiving situations. Challenges become a matter of perspective and attitude, often becoming overwhelming to caregivers who experience high levels of stress but have no idea how to resolve the situation. Surprising to caregivers is that care recipients experience the same range of emotions.

Caregiving is a revolving door where those involved become disgruntled with aspects of providing care because of repeated yet failed attempts to change unfavorable aspects: for example, an inability to receive appropriate treatment from a physician who seems never to listen to concerns or receipt of denial letters from an insurance company refusing to approve a long-term care insurance claim in spite of multiple requests for documented information.

These are events frequently experienced by over involved or frustrated caregivers whose behaviors or lack of detailed follow- through make situations more challenging because of a loss of objectivity and patience. Stubbornness and a lack of introspection occur on the part of the caregiver, resulting in an inability to see that the caregiver’s own actions may be contributing to problems.

How does one avoid the burdens of the caregiving trap by achieving middle ground and the right balance? One suggestion is to gain awareness of the tug-of-war of emotions that occurs between the caregiver and the care recipient. This insight may provide a better understanding of the aspects common to aging not yet experienced by caregivers who are able and healthy.

Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM.  In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.

Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes is available through all major bookstores as well as on PamelaDWilson.com. You can find her on YouTube, Facebook, Twitter, and Linked In. ©2015 Pamela D. Wilson All Rights Reserved

The post Caregiver Burden: Back to Caregiving Mondays appeared first on Pamela D Wilson | The Caring Generation.

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October 15, 2015, Lakewood, Colorado

Death changes everything. Some view Pamela D. Wilson’s life as tragic—she lost two siblings, her mother and father, and nearly all aunts, uncles, and grandparents by the time she turned 38. As a long-time caregiving advocate, care navigator, and caregiving educator, Pamela D. Wilson CSA, MS, BS/BA, CG has personally helped thousands of family and professional caregivers.

Her advice for caregivers and care receivers is supported by her life; she has personally navigated through the experiences of many family caregivers and the older adults she serves today.  Pamela will be speaking at the annual Denver Senior Law Day event on Saturday October 17th, 2015 at the Denver Merchandise Mart. Her topic, Get Smart & Avoid Chaos: Family Discussions and Care Planning.

At Pamela’s presentation, caregivers will learn how to:

  • Initiate discussions about sensitive mental and physical health issues
  • Acknowledge the challenges caregiving brings to family interactions and relationships
  • Identify the components and costs related to planning for care
  • Avoid situations of chaos, crises, and the unexpected by making a plan (and a back0up plan)

Her book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, arms caregivers with the knowledge to advocate on behalf of their loved one and provides advice on how the caregiver can maintain a balance between caregiving and everyday life while working through the unexpected challenges of caregiving.

Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM.  In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.

Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, is available through all major bookstores as well as on PamelaDWilson.com.  You can find her on YouTube, Facebook, Twitter, and Linked In.

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The post Pamela D. Wilson, The Care Navigator, Presents at Denver Senior Law Day appeared first on Pamela D Wilson | The Caring Generation.

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Caregivers, care recipients, and persons with an interest in aging attended the Amazing Aging Expo in Denver, Colorado today. Anthem Memory Care, was a specialty sponsor of the expo.   Shannon Stewart Ingram, VP Sales and Marketing, organized and led a group of industry experts for a presentation and panel discussion titled, “Alzheimer’s & Dementia Caregiving: Myths & Realities” by Pamela D. Wilson, Karen Twichell, and David A. Hoppe.

Anthem Memory Care (not to be confused with Anthem insurance) is a leader in the senior care industry with several communities in the Denver metro area specializing in memory care. The presentation and panel discussion focused on the challenges experienced by caregivers and common myths about memory loss. I was honored to be included in the special group of presenters and to have the opportunity to meet many committed caregivers seeking education at the Amazing Aging Expo.

Many families unfamiliar with where to begin the search for a senior care community feel lost. Others call a long list of potential communities and become frustrated because they are uncertain about what to ask or do not receive calls back from admission or leasing staff. The Care Navigator provides support with transitions and identifying communities in the Denver, Colorado area. We look at the long term picture of health, well-being, personal preferences, and finances to help you make the best decision.

Depending on where you live there may be other services, local publications or websites offering information about senior care communities.  An online source, Senior Advisor, has a national database of senior care communities including independent apartments.  Families utilizing the information and services post independent reviews. For example in the Denver area, the site lists 85 communities and 593 reviews. Even if you are utilizing a local source, checking reviews on Senior Advisor may offer another opinion about a community you are considering for a loved one.

One question posed to the Anthem Experts panel at the Amazing Aging Expo was the “right time” to move a loved one to a senior care community. While there is no single right answer, the right time depends on aspects that include:

  • Care needs – Senior care communities offer support with daily activities that include bathing, dressing, medication reminding, light housekeeping, and meals.
  • Isolation – If a loved one has stopped driving and becomes isolated at home the social aspects of a senior care community are extremely beneficial to warding off depression that is a common side-effect of being isolated and living alone.
  • Personal preference – Many times after a spouse passes away the caregiver spouse no longer wishes to remain in the marital home. A move to a retirement community offers a new start, the ability to meet and make new friends, and to socialize.
  • Memory loss – Individuals with memory loss who might have remained independent at home with the support of in home caregivers may reach a situation where it is not safe to remain at home without 24/7 care. At this point, after reviewing available finances, many families choose to move a loved one to a memory care community where support  and socialization is available 24/7 at a more affordable rate.
  • Benefit of a daily routine – After retirement, the regular routine of work disappears. Many individuals, especially those experiencing memory loss, benefit from daily routines that are offered by many senior care and memory care communities.
  • Home maintenance – Daily life without the responsibilities and expense of maintaining a home is greatly simplified by a move to a senior care community. Few older adults tell me that they miss activities such as yard work, shoveling snow, housekeeping, or preparing meals. Senior care communities offer freedom from many daily activities that become tedious or time consuming.
  • Caregiver exhaustion – The daily life of a caregiver caring full-time for a spouse or loved one can be exhausting. The health of the caregiver often suffers. Many times investigating a care community is a prudent step not only to protect the health and well-being of the care recipient but also the health and well-being of the caregiver.

While there is no right time to move a loved one to a senior care or memory care community, there are risks in waiting too long to consider a move. The support provided in a senior care community may be considered preventative in nature. It is true that many older adults forget to take medications as prescribed. Many have lost the desire to prepare meals and begin losing weight. Others who are isolated become depressed or anxious. Personal hygiene and housekeeping become challenging.

Rather than watch a loved one struggle to maintain in a private home or apartment, consider investigating a senior care community that offers many benefits and that may prevent the requirement for a higher level of care provided only by nursing or rehabilitation communities. At the point a serious fall or health issue occurs, a senior care community may no longer be an option. Many older adults tell me that they do not want to live in a nursing home.

Investigating care communities before a need occurs is wise; the risks are low. Tour during a meal period so that you are able to see the age and activity level of other residents in the community. If you are fearful about being continually contacted by care community staff be clear to state that you are “looking” and do not have a specific time frame in mind.  Let staff know the frequency at which they are welcome to contact you.

The decision to move a loved one to a senior care community will have a better outcome if not rushed or made as the response to a health or medical crises. Investigate and tour communities early before the need, involve your loved one in the process if possible, and plan the move at the time appropriate based on the need of your loved one.

For more information on how The Care Navigator provides support with care transitions visit our page called Precious Cargo.

The post Memory Loss and the Benefits of Care Communities appeared first on Pamela D Wilson | The Caring Generation.

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