Vaccination Vacillation

It’s as traditional as the holiday season:  just as the wreaths are hung and holiday lights are strung, the annual “flu-shot fence-splitting” begins.  For far too many Americans, the nagging question is:  “Should I or shouldn’t I get a flu shot?”

Every individual case is different, and your doctor or nurse practitioner is your best source of guidance, but a few facts bear repeating:

·         Everyone is vulnerable to the flu.  Many of us think if we aren’t in hospital-settings or around young children, we are not at risk.  But caregivers might be especially vulnerable because we neglect our health generally (too little sleep, poor diets) and ignore warning signs specifically. 

·         60 million Americans had contracted H1N1 by March 2010; 270,000 of them were hospitalized, and 12,270 died from H1N1-related complications, the Center for Disease Control reports.

·         Despite all the attention the flu (particularly H1N1) has received in recent years, Americans still report lagging numbers in getting the flu vaccine.  Only 32% of American adults surveyed by Rand Corporation at this time last year had been vaccinated for the flu.   Many Americans fear the side-effects of the flu more than the flu itself, despite well-documented evidence that side-effects are rare and mild (and  include soreness, redness, or swelling at the site of the shot;  some may experience headache, muscle aches, fever, or nausea).

The Advisory Committee on Immunization Practices recommends a flu vaccine for everyone 6 months and older.    The US Government will make available more than 155 million doses of the flu vaccine this winter, and most states have already received shipments.  Most local drug store chains offer the vaccine, usually at less than $30.  Starting this year, adults need to receive only one flu vaccine a year (unlike years past when there was a separate H1N1 vaccine).  A new high-strength vaccine, Fluzone High-Dose, is available to those 65 years and older, who typically have weaker immune systems.

If you are on the fence about the flu vaccine, this is a good time to consult your physician or your pharmacist, and research your options (check out www.cdc.gov).  If you are a family caregiver in the throes of “vaccination vacillation,” consider this:  if H1N1 or seasonal flu puts you out of commission, you could well become more of a risk than a help to your loved one.

A Wonderful Caregiving Roadshow

I want to thank Barb Stahley and The Boston Shoppes of Boston, Pennsylvania, for hosting our first “Taking Care of Our Caregivers” seminar on Saturday. It was a pleasure for me to meet local family caregivers and a privilege to hear their personal experiences and insights. The seminar was the perfect way to end November, National Family Caregiver’s Month.

During and after my presentation, I had the wonderful opportunity to address insightful questions from several of the family caregivers in attendance. Because so many of us share the same challenges and concerns, I thought I would share some highlights of our conversation:

• What can you do when a caregiver is not providing adequately for an elderly family member -- for example, when cheese and crackers are the daily meal? You might consider giving them the gift of Meals on Wheels for a one-month trial, to decrease the workload and financial burdens on the caregiver. Or, bring one-dish meals to their home that would be easy to freeze and serve. Finally, consider approaching the caregiver (with great sensitivity) to explore what might be happening and to learn about additional assistance they may need.

• Is there some resource that would provide in-home assistance to allow the caregiver some free time? Many options exist, including professional home-care, hospice, and community resources such as Area on Aging. Sometimes, simply telling friends, neighbors, church members or health care professionals that you need a break can make a tremendous difference. People want to help, but they may not know what you need. (Proving this point, the caregiver who raised this question at the seminar said she was so fatigued and just wanted help with housekeeping; another caregiver in attendance offered her a recommendation and contact information on the spot!)

• What should you do when you think your loved one may be experiencing symptoms of dementia? The best course of action is to discuss the changes you are observing with your loved one’s primary care physician, who can do some initial screening. There may be non-dementia causes that the physician can identify and treat.

We also discussed some of the topics I’ve featured in the Critical Conversations articles on this blog: when is it okay to say “no” to doctors’ suggestions for additional tests, procedures, and medications? (we discussed such things as communicating honestly with each other and advance directives); and the difference between home care, hospice care, and palliative care.

“The Caregiver’s Caregiver” seminars are great opportunities to connect with other caregivers and build a stronger caregiving community. The seminars are all about compassion and taking care of one and other. Stay tuned for more information on upcoming “road shows” and if you would like to schedule a seminar at no cost for your civic, church, social, or neighborhood group, just drop me a note at caregiver2caregiver@gmail.com.


I thank all who came to this event and made it possible. You made my Thanksgiving incredibly special.

A Four-Letter Word for Relief

Fatigue. Insomnia. Weight gain. Mood swings.

Each of these conditions can be a symptom of caregiver stress. If there is a common cause for these problems, could there be a common source of relief?

Quite possibly – and it can be spelled in four letters. Y-O-G-A. This form of exercise is too often viewed as either too exotic (think voices chanting “om” in unison) or too hip (think Madonna) to be practical.

In truth, yoga is a form of release and relief that is enormously popular and increasingly available. The health benefits of yoga are well documented and can be particularly important to harried caregivers. Yoga focuses on mind-body-spirit unity. It requires both physical and mental discipline. The Mayo Clinic reports that yoga, with its emphasis on posture and breathing, can help:

• Reduce stress. Yoga requires quiet and concentration. It impels you to close your mind to stress and discipline yourself to seek peace.

• Increased fitness. Those who stick with yoga cite improvements in balance, range of motion, muscle tone, flexibility and strength.

• Weight loss. Yoga emphasizes self-control and discipline, including discipline over diet.

• Management of chronic conditions. Yoga may help with depression, anxiety, and insomnia as well as fatigue and mood.

Yoga is considered safe for people of all ages and abilities – even the wheelchair bound. Different types of yoga require different levels of intensity. If you are concerned about starting, talk to your doctor, particularly if you balance problems, uncontrolled high blood pressure, certain eye conditions, or severe osteoporosis.

Beginner’s yoga classes are not difficult to find; local gyms, churches, and YMCA/YWCAs typically offer them. On line, check out “Everything Yoga,” which provides a directory of yoga classes by zip code. If your loved one is well enough, he or she may also benefit by participating with you. Or, if you can’t leave home, many books and videos allow you to learn and practice yoga at home. Yoga requires very little equipment: comfortable (breathable clothes) and a yoga mat (which can be rented).

Yoga isn’t a cure-all, but chanting “om” may in fact be your password to more peace.

On the Road: Saturday, November 27th

The Caregiver’s Caregiver is taking a road trip, and I hope you’ll come along.

I’ll be appearing at The Boston’s Shoppes in Boston, Pa, just outside of McKeesport, on Saturday, November 27th, for two special seminars, the first at 11:00 a.m. and the second at 1:00 p.m. If you are in the greater Pittsburgh area, please stop by. We’ll share caregiving stories, insights, and experiences, and I’ll be happy to answer your questions.


The holiday season can be particularly frenzied for family caregivers. This event offers us respite and refreshment, as we learn and cope together while enjoying some holiday treats and holiday shopping in the lovely Boston Shoppes setting.


If you are a family caregiver, or if you know and love someone who is, won’t you please join us (and spread the word)? I am eager to meet you, there is no cost for this event, and no reservations are required. If you would like to schedule a seminar for your group or organization, please contact me at caregiver2caregiver@gmail.com

Thoughts to share today

“Today we have gathered and we see that the cycles of life continue. We have been given the duty to live in balance and harmony with each other and all living things. We bring our minds together as one as we give greetings and thanks to each other. Now our spirits are one.”
Haudenosaunee Thanksgiving Prayer


Dear Caregivers,

Today may we take a moment to give thanks for our blessings, to ask for patience in our actions and words, to ask for perseverance each day, and to care for our loved ones with compassion and gentleness. We offer thanks to those who reach out to us every day in so many ways to love us and support us on this journey.

Karen

Critical Conversations-Part 2

Talking about end-of-life issues can be difficult for anyone. Often the best way to address the subject is to begin the conversation with sharing views about values, spiritual beliefs, and desires related to what makes life worth living for each individual. These conversations may also be stimulated after the loss of another family member or friend. Those who cannot have actual conversations may still share their desires in letters to loved ones. Learning about another’s wishes is invaluable in meeting their desires when they can no longer express their needs.


Everyone should take the initiative to make their own decisions while they are able to as leaving others to make these decisions for you may not result in choices that you would made or may cause much dissent within your family. Sharing your decisions with your loved ones, your attorney and your doctor is also very crucial to having your wishes respected.
These decisions should be reevaluated and altered over time if circumstances change. Advance directives do not expire. They remains in effect until the individual changes it.


An Advance directive, living will, personal directive, or advance decision are all terms used to mean the same thing; they are simply written instructions to communicate one’s wishes and/or to appoint someone to speak for them when they are no longer able to due to illness or incapacity. A living will can be as simple as naming someone to make medical decisions in your behalf or written as; “If I suffer an incurable, irreversible illness, disease or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued” or can become very complicated addressing every single wish. Advance directives should provide specific directives regarding such issues as : where the individual wishes to reside if terminally ill, if intravenous fluids or artificial nutrition is desired, if life support equipment such as a ventilator is wanted, if life support is to be discontinued if brain death has occurred, if CPR is desired, if antibiotics for infections or pain relief is desired?


Advance directives have increased in popularity with 30-40% of Americans having them in place.


They only are effective if 2 physicians certify that the individual is unable to make medical decisions as per individual state law.
Advance directives are legal in every state but the laws of each state may vary so it is important to comply with your state of residence.
You do not need an attorney to complete an advance directive, it becomes a legal document as soon as it is signed in front of the required witnesses. Family members, heirs and medical providers cannot be witnesses.
Living wills have nothing to do with an individual’s personal possessions.


A medical power of attorney, durable power of attorney (DPOA), a healthcare agent or health care proxy are all terms used to identify the person appointed by the individual to speak for them if it is deemed that the individual is unable to make their own medical decisions. It is usually a part of an advanced directive.


The choice of a healthcare agent must be wisely made to ensure that the decisions are followed as the agent will have the legal authority to speak for the individual regarding health care decisions only. This person will have the legal right to make decisions regarding treatment for the individual as if they were still capable of making and communicating health care choices even if family members disagree. Some will also appoint a second individual in case the first would not be available to make decisions. The agent cannot make decisions if the individual regain the ability to make their own decisions.


You MUST discuss your wishes with the person(s) you have chosen to speak for you.


Templates for these documents can be purchased, local hospitals should also have forms or one may write a letter in their own words. Many individuals will have a combination of living will and health care proxy. Once these decisions are made and the paperwork is completed give copies to family members, your doctor, your attorney and health care proxy. Documents must be easily located in time of need.


Once again it is important to follow the laws of the state you reside in. If you reside in different states, you must make sure that your decisions are legally correct by each state’s laws. More information can be obtained at http://www.caringinfo.org/index for state specific details.


It is important to be aware that out-of-hospital emergency personnel (EMT’s, paramedics) cannot legally honor living wills or medical powers of attorney. Some states have specific forms for out-of-hospital resuscitation efforts. Once the individual is evaluated by a physician, advance directives can be implemented.


Other important decisions:
Power of attorney (POA), letter of attorney in common law systems or mandate in civil law systems is an authorization to act in another’s behalf in a property or financial matter not health related matters.


A will or testament is a legal declaration by which a person names one or more persons to manage their estate and provide for the transfer of property at death. Any person of legal age and sound mind can draft their own will with or without the aid of an attorney.


Planning funeral services, memorials, life celebrations has become increasingly popular. Individuals can plan and finance their own funerals, memorial services, or life celebrations before they die. This ensures that their desires are met and removes the emotional and financial burden for the family.

On the Road: Saturday, November 27th

The Caregiver’s Caregiver is taking a road trip, and I hope you’ll come along. I’ll be appearing at The Boston’s Shoppes in Boston, Pa, just outside of McKeesport, on Saturday, November 27th, for two special seminars, the first at 11:00 a.m. and the second at 1:00 p.m. If you are in the greater Pittsburgh area, please stop by. We’ll share caregiving stories, insights, and experiences, and I’ll be happy to answer your questions.


The holiday season can be particularly frenzied for family caregivers. This event offers us respite and refreshment, as we learn and cope together while enjoying some holiday treats and holiday shopping in the lovely Boston Shoppes setting.


If you are a family caregiver, or if you know and love someone who is, won’t you please join us (and spread the word)? I am eager to meet you, there is no cost for this event, and no reservations are required. If you would like to schedule a seminar for your group or organization please contact me at caregiver2caregiver@gmail.com

"Critical Conversations" Part 1

As medical advancements have changed life expectations, they have also changed lengths of stay in busy hospitals. As a result, people are going home sooner -- and often sicker -- than they have in the past. Consequently, some of the hardest caregiving decisions occur as our loved one is being released from a healthcare facility.

Most hospitals and skilled facilities have discharge planners who assist families in preparing to take loved ones home. Discharge planning should begin as soon as the individual enters the hospital. If this does not occur, family or friends need to ask questions of the medical and nursing staff as quickly as possible and certainly as soon as the word “discharge” is mentioned: will my loved one need oxygen, IV therapy, a hospital bed at home? Will respiratory therapy continue? Preplanning is essential.

Home Care

Options for getting professional caregivers vary depending on the individual’s needs. Often home care is suggested. Home care must be ordered by a physician for a specific purpose, or what is called “a skilled need.” Home care involves nurses, home care aides, several types of therapists, and social workers, and the hospital staff will make these arrangements. Although home care does not begin until the individual leaves the facility, caregivers need to plan in advance for oxygen, hospital beds, IV medications, and other related treatments. If home care was not initiated prior to discharge or if the individual has not been hospitalized but has had major changes in condition while at home, the physician can order home care without hospitalization.

Home care staff provide care and instruction to individuals and caregivers regarding disease processes, medications, treatments, therapies, hygiene, safety, and community resources. Home care is a limited timed – not long-term – service. The expectation is that the individual or caregiver will learn how to provide the care that is needed. Home care services can take place in private homes, group homes, personal care homes and assisted living facilities.

These services are funded under payment plans like Medicare, Medicaid, private insurers, or by the individual. Under Medicare and some private insurers, the individual must be “homebound” – in essence, it must be a taxing effort for the individual to leave the home for treatment.
Home care services do not cover the cost of medication, some equipment or supplies. Some insurers cover the costs of IV medications, supplies and some equipment if ordered by a physician. Other medications require separate coverage. The discharge planner or your insurance company case manager should be able to clarify this for the family.

Lab work may be done by home care staff if there is an additional skilled need, but lab work alone is not sufficient reason for home care services to continue. After an individual has been discharged from home care, the physician may contact a lab that offers in-home services for blood work if medically needed and if it is difficult for the individual to leave the home.

Hospice Care

Individuals facing life-threatening or life-limiting illnesses must also make decisions. They may opt for home care and then transition to palliative or hospice care, depending on their needs and desires. Honest discussions need to occur between the ill individual, family and physician regarding the disease process affecting the individual. Difficult questions need to be addressed:

• What is the prognosis with and without treatment?
• What is the quality of life with and without the treatment?
• What kind of care is going to be needed?
• Where does this individual want to spend his or her remaining days?


Many health care providers have a difficult time initiating end-of-life discussions with those in their care. Many physicians have enjoyed long-term relationships with the individual and their goal is to heal those in their care. Healing can take many forms, however, and sometimes it means simply lessening pain and letting go. So the individual or caregiver may need to initiate the conversation. Make a list of your questions and concerns. If at all possible, have someone else with you to listen, take notes and offer support.

Most Americans say they would prefer to die at home, yet less than 25% do. The reasons vary: sometimes, it is the result of family preference, lack of caregivers, rapidity of decline, and uncontrollable symptoms. Hospice and palliative care can be provided in private homes, group/personal care homes, assisted living facility, nursing homes and hospitals. Hospice services can also be provided in hospice care facilities.

Hospice is a family-centered service designed to meet the physical, emotional and spiritual needs. The focus of hospice care is comfort and the control of pain and symptoms, so curative treatments such as chemotherapy are not continued.

Anyone at any age with a serious illness whom the physician feels has months rather than years to live is eligible to receive hospice services. The physician must order hospice services but unlike home care, the family may call the hospice to initiate the call to the attending physician. The physician will certify that if the disease process progresses normally life expectancy is less than 6 months. Hospice services can be recertified after six months if the individual has shown a decline in their condition. Some patients improve once pain and symptoms have been controlled and are discharged from hospice; they can be readmitted if conditions worsen again.

Hospice services include nurses who provide direct care with the focus being pain and symptom control, teaching and emotional support; aides who provide hands-on hygiene care; volunteers to “sit” with the individual to allow caregivers time away; social workers who help with financial concerns, end-of-life directives and emotional support; chaplains who help meet spiritual and emotional needs; and bereavement counselors who support the caregiver, family and friends before and after the individual dies. Adjunct services such as art, massage, music and pet therapies are also available. Respite care is available allowing the individual to stay in a health care facility for up to 5 days at a time, to allow for caregivers to have rest and relief.

Medications related to the life-ending illness, as well as medications for pain and symptom management, are covered. Oxygen, equipment, and supplies such as adult incontinence pads are provided.

Medicare, Medicaid, most private insurers cover hospice services. Those unable to pay may qualify for free care with some hospices.

Palliative Care

Under this form of care, aggressive treatments such as chemotherapy can continue, but pain management experts work to control pain and symptoms too. Coverage for this care varies depending on insurance plan benefits. Many will transition to hospice care if conditions/desires change.

Please do not let words like “hospice” and “palliative care” become barriers to receiving the care and support you and your loved one need. Hospice is sadly underutilized. Initiation of services as early as possible allows for maximum benefit to all.

To find the hospice or palliative care agencies in your area, contact the National Hospice and Palliative Care Organization Helpline at 1-800-658-8898 (toll free) or http://web.nhpco.org.

The Ninth Caregiver Right:

I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers. 

Americans are living longer lives than ever before, but we are not necessarily leading healthier lives.  Older Americans with multiple health problems are suffering needlessly, as are their family caregivers, because our health care system does not effectively coordinate their care.
 

·         One in 5 older adults has complex chronic health conditions that will require ongoing medical intervention; 90% have at least one chronic health condition, while 77% have multiple conditions.

·         Older adults with multiple chronic health conditions average 37 physician visits with 14 different doctors a year.  These same adults may receive as many as 50 separate prescriptions a year. 

·         Older adults with multiple chronic health conditions often face duplicative tests, procedures, and costly medications.  The more numerous the treatments, the greater the  potential for errors.

·         The family caregiver not only copes with the physical and emotional needs of their loved one, but also pays a hefty financial burden for these treatments: depleting savings and retirement funds; borrowing money; needing gifts of money from family members and friends; or seeking government aid to cover expenses.  Others cut back household expenses or their own health care needs.  Out-of-pocket expenses for the caregiver average approximately $6,000 a year. 

Because so little of this healthcare is formally coordinated, the already overwhelmed caregiver often tries to organize, coordinate, and record all the treatments, paperwork, and bills associated with care. Without sharp improvements to healthcare coordination and resources, patients and caregivers can expect to shoulder more costs, more complexity, more needless bureaucracy, and increased risks of errors. 
 

One way to mitigate some of these challenges is to ensure robust communications between all members of the healthcare team.  Physicians involved in the care of the individual patient must coordinate with each other to decrease risks of misdiagnosis and to avoid duplication of services.  When more than one physician is prescribing medication, it is imperative that only one pharmacy system be used to safeguard the individual from potential medication errors and dangerous interactions that could result in serious consequences.  Electronic medical records will ease some of these problems, but will never totally replace the need for physicians to communicate with each other.   

Families should not have to fend for themselves in finding support services for their loved one or themselves.  We need to come together as a caregiving community to share knowledge and information.  There are many support groups in place for caregivers, but it is often too difficult to leave the home to attend the meetings. The internet is considered an in-home support for a growing number of caregivers. Each of us needs to share information – including our personal lessons learned. 

As America ages, Baby Boomers – long known for their activism -- are expected to play a very important role in health care reform.  Their sheer numbers will almost double the population of seniors in the next two decades in America.  They will be more technologically savvy then earlier generations, and more demanding.  They are not expected to sit quietly and allow their healthcare needs to be overlooked.

Yet we cannot afford to wait for a rising generation of seniors.  We need to be activists for better care today.  We need to learn about our health care issues, needs, medications, and choices.  Despite the ongoing national debate, we can expect that our system of healthcare will change – and we have both the opportunity and imperative of shaping that change.  We need to learn all that we can; we need to make our informed voices heard.

The Campaign for Better Care, www.CampaignforBetterCare.org focuses on making healthcare  comprehensive, coordinated and family-centered.  The goal is to bring the voice of the consumer into the current debates over healthcare reform.  Please take time to get involved and share what you learn.   Change is also occurring right now in individual states.  To learn what changes are taking place in your state, check out www.communitycatalyst.org.

In the end, the Caregiver’s Bill of Rights is only as effective as those of us who seek to uphold it.  Let us begin now.

The Eighth Caregiver Right:

I have the right to protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full time help.

Caregivers often make a total commitment to caring for another.  They sacrifice their own lifestyles to provide for their loved ones, often giving up jobs, friends, other family members, their own homes, and even their own sense of self.  Their lives revolve around caring and comforting their loved one.  In a very real sense, the caregiver gives up their life for another, which is the ultimate act of love.

When the caregiving responsibilities are over, do caregivers feel a flood of relief?  Are they able to return quickly to “normal”? 

Ironically, for most caregivers, the answer is no.  More often than not, caregivers find themselves facing a period of profound adjustment and grieving.  

Sometimes, we grieve the loss of a former lifestyle that cannot be reclaimed easily, if ever; sometimes, we grieve the loss of caregiving responsibilities, which gave us a heightened sense of purpose; sometimes, we grieve the loss of a loved; and more often than most of us would care to admit, we are grieving all these losses at once.

Each of us grieves at our own pace; there is no “normal” pattern nor prescribed amount of time.  It is important to acknowledge the loss, to recall the happy and sad moments we have lived through, and to allow ourselves time to adjust, heal, and resolve unfinished issues.   We would be wise to expect feelings of loneliness, uselessness, frustration, anxiety, and anger during this process. 

The caregiving experience will always be part of us; we cannot simply “give it up.”   Many find that keeping a journal at this time of adjustment is helpful in putting the experience into context, reflecting on the new skills we’ve learned, and recording our actual healing.    

Finding the way back to a “regular” lifestyle is often a matter of taking small steps; making a minor change or trying a new activity each day that gives us a new sense of purpose.  Many of us will return “full time” to activities we once gave up or scaled back:  work, church functions, hobbies, friendships.  Others will begin new experiences:  returning to the workforce, an exercise class, or a volunteer activity.  Whatever path we take, our journeys will be eased if we have someone to share it with.  Perhaps calling an old friend or reaching out to an individual from a caregivers support group will encourage us and give us the companionship of a “fellow traveler.”   

Just as when they were providing care, caregivers must remember that they do not have to be alone.  They are part of an extraordinary and rapidly growing group of individuals who put another’s needs ahead of their own. They now need to learn how to reach out to each other.

The Seventh Caregiver Right:

I have the right to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

As a young child, I watched my mother caring for her father -- my grandfather -- as he reached the last stages of his illness.  My mother was (and still remains) frightened of needles, but she learned to administer injections to relieve his pain.  I recall watching closely as she practiced on an orange.  She was tender and gentle and always fearful that she would hurt him.  Even as she cared for him, she was grieving the loss of her beloved parent while parenting two young daughters and working a fatiguing job outside the home.  Many nights, while my father worked night-shifts, she would bundle my younger sister and I up and drive to her parents home to help her father in the middle of the night.  Yet she wanted to do more for her parents.  It is now 50 years later and my mother still questions if she did all she could.  She has never given herself adequate credit for the sacrifices she made and the challenges she bravely faced.

We expect caregiving to be challenging and exhausting.  Yet we may not fully embrace the idea that caregiving can be among the most significant and satisfying accomplishments of our lives. 

The key to caregiving is communication.  Learning what your loved one wants and expects during this time is as important as acknowledging what you can and cannot provide.  These discussions are vital to the caregiving experience.

Once you and your loved one have reached these critical decision points, respect the choices you have made.  Your loved one’s choices may not be what you would have wanted for him, but if he is of sound mind, these choices should be honored to the best of your ability.  As hard as it is, setting end-of-life goals is as important as setting goals at any other stage in our lives.  Likewise, your needs and limitations as a caregiver should also be discussed and honored.

Often, those not closely involved with the day-to-day caregiving make suggestions or comments that may cause us to question the choices we, or our loved ones, have made.   In most cases, these comments are well intentioned, but they can rattle our confidence.  And – all too often – we allow our self-confidence to be shaken by questioning whether we are doing enough, and whether our earlier decisions were sound.   At times like these, we must consider the promises we have made, the progress we’ve already achieved, and the goals we are working toward.  Be directed by those decisions – not the opinions of others or group consensus.

During the most difficult times, give yourself credit for each task you complete and every challenge you meet.  Honor the fact that you have taken on some of the hardest responsibilities any human being can face.  Be gentle with yourself; be realistic about your expectations; don’t chide yourself for the things that don’t get done each day; and don’t compare yourself to other caregivers.  Your journey is unique. 

Make memories despite the challenges of caregiving.  Make the time to enjoy each other and each day – share favorite memories, sing, watch a movie, look at old family photos.  These simple activities will bring your comfort and remind you why you are the loving caregiver you are.  

The Caregiver’s Sixth Right:

I have the right to receive consideration, affection, forgiveness and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return. 

Ryan and wife, Joan, had two children together, a girl and a boy. When their toddler son became ill with cancer, Joan left the family because she could not cope with the pain and loss that was to come.

Soon after, Ryan’s father moved in to help care for the children because Ryan had to continue to work to support the family.  Several years past and the cancer gained control of this small boy’s life despite all attempts to stop it. 

Over these years, Ryan reached out to his then ex-wife but she continued to have no contact with the family. Their daughter blossomed in her father and grandfather’s care, her love for her brother knew no bound, but her resentment for her mother had also grown very strong.

The child was entering the last days of his life and a well-meaning family counselor contacted the mother and convinced her to come say goodbye to her son so she would have no regrets later in her life. Joan’s arrival at the home was unannounced and not well received; the child in his last moments of life was unaware of her presence, her ex-husband was stunned, her father-in-law was distant, and her daughter was angry.  She was so angry that she ran away from her brother’s side, crying uncontrollably.

Joan said her goodbyes to her son, but was hesitant to approach her daughter. The peace and love that had filled this small home, knowing that the child’s physical pain would soon come to an end, was shattered with shock, anger, and resentment. 

 There was no forgiveness for past decisions.

The path of our lives is rarely smooth and straight; most often, it resembles a rocky road, pockmarked with hard experiences and tough decisions.  The same description often applies to our relationships with family members.   Contrary to portrayals in popular media, having a loved one in need does not wash away past difficulties in families.  Death-bed reconciliations are more rare than common.  Indeed, the pain of past conflicts may actually intensify with the stress of caregiving.  

One of the most extraordinarily important and difficult tasks of caregiving is learning to accept family members wherever they are on the caregiving journey.

The caregiver who has been present every day does not want to be cast aside when the long-distance family member arrives on the scene.   Local caregivers may resent siblings who live long distances away and do not have to cope with the day-to-day changes and stresses. They may feel taken for granted or judged for their actions.

The long-distance caregiver often feels angry that decisions were made without him; she may feel guilt or despair because she was not able to enjoy special  moments in the last months, weeks, or days of a loved one’s life.  They may feel awkward at their lack of knowledge and ability to provide the care needed.  

Each family member has their own abilities and limitations in this crucial time of need. 

Each may be coping in the best manner they can in the current situation.

Each family member needs to examine the reason they are there:  is it to care for the individual in need, is it to relieve the primary caregiver, or is it to forgive and seek forgiveness?   

As hard as it may be, unresolved conflicts may need to go unresolved as a life one dies.  We may need to discipline our hearts to accept, forgive, and create peace.  And we have the right to expect these supportive emotions in return.

 

The Fifth Caregiver Right

I have the right to reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

Sometimes when our loved ones face uncontrollable illness and medical regimes, they seek to control their environment by controlling us. 

As family caregivers we need to learn to set boundaries to protect our own health and well-being – and we need to free ourselves from guilt trips.  It is acceptable to say no to unreasonable requests made by our loved ones and well-meaning family members and friends. 

Some unreasonable requests start gradually and innocently:  the expectation that you can accommodate every friend, family, or neighbor who wishes to come for a visit.  But left unchecked, these expectations can grow into enormous stressors for the caregiver.  As the holiday season approaches, “special requests” may intensify:  our loved ones might expect us to prepare and host Thanksgiving dinner just as we always have, or to maintain our holiday shopping practices.  We need to give ourselves a break: the caregiver does not need to maintain an open-door policy for every visitor or overnight guest, and you have the right to say you can no longer maintain every holiday tradition. 

It is important to be alert to attempts to manipulate us, as innocent as they may be.  When a loved one is hurting, it is easy to succumb to the pressure to say yes to everything, in the hope of staving off their depression.  But following this pattern leads to simmering resentments and caregiver depression -- feelings that interfere with the ability to provide nurturing care.  When caregivers frenetically try to plan the perfect holiday, they often find themselves run down, susceptible to colds and flu, and unable to render any care at all. 

One case in particular still troubles me, because the caregiver’s assent to an unreasonable request worsened another relationship in her family:

Rose was an elderly woman who lived with her daughter, Donna, and her son-in-law.  Rose was suffering from a circulatory problem in her left foot.  The doctors had discussed the options very honestly with her:  Rose needed surgery to correct the problem or the condition would worsen and lead to pain, infection, and loss of life.

Every day, Rose fluctuated:  should she have the surgery at 90, or should she just allow the condition to run its natural course?  Rose would ask Donna over and over again what she should do.   Donna was beside herself:  she did not want to make this decision for her mother, despite her mother’s persistent attempts to get her to do so.   

As the days progressed, Rose would not leave her recliner, demanding the full attention of her daughter and refusing to care for herself in any way despite being fully capable. 

But Rose was not the only family member in need.  Donna’s daughter lived out of state and was soon to become a mother for the first time.  She wanted Donna with her, and Donna desperately wanted to be there.   But Rose was having none of that.  She demanded that Donna not leave her with anyone else. Donna was torn, depressed, and angry.  

Ultimately, Donna conceded to Rose’s demands.  She stayed home with her mother while her husband went to the birth of the first grandchild.  Donna’s daughter was very angry at her mother’s decision – but her anger did not extend to her grandmother’s unreasonable demand.     

Caregiver’s Fourth Right:

I have the right to get angry, be depressed and express other difficult feelings occasionally.

Watching someone we love decline, lose their independence and perhaps their
life....

Having little or no ability to predict or control the changes that take place each day....

Losing the semblance of our “normal” lives ....

Feeling exhausted, frustrated, anxious, and hopeless....

The emotional strains of caregiving often overshadow the physical demands.  It is not unusual for caregivers to become depressed as our responsibilities increase and our sense of control decreases.

Depression manifests itself by many names and in many ways.  Many describe their feelings as anger, anxiety, guilt, irritability, loneliness, resentfulness, sadness, or stress.   Others experience a change in their eating habits, a weight loss or gain, extreme fatigue, loss of interest in things, a sense of inadequacy, chronic complaints of headaches, digestive problems and pain.  Most caregivers do not want to admit to being depressed.  But signs of depression are not signs of weakness.  If the caregiver or those around the caregiver notice that these symptoms are persistent or reoccurring, it is imperative that they seek help.

Studies have shown that 30-40% of caregivers have symptoms of depression -- double the rate of the general population.   Family caregivers comprise more than 60 million people.  The majority of these caregivers are wives or daughters of the individual requiring care.  Women are more likely to be depressed but less likely to seek care; they are embarrassed, or deny what they are feeling, or they don’t make the time.  Men deal differently with these same feelings; they are more likely to seek treatment or “self-medicate” by working longer hours or turning to alcohol.   Typically, men are less likely to express these feelings or confide in friends.  And more than 60% of elderly caregivers are at a higher risk of serious health problems than their counterparts because their bodies have been in an extended period of stress. 

Family caregivers may also experience these feelings after the caregiving experience ends.  The loss of a loved one, the loss of what was the focus of your life, and a diminished sense of purpose can exacerbate depression. 

How can you cope? 

·        Set realistic goals for yourself.  You cannot do it all, and you need not do it all alone.

·        Break the big tasks into smaller parts.

·        Do the worst task first.  Delay and procrastination increase stress.

·        Stay in touch with the outside world.

·        Make time for yourself.

·        Confide your feelings to a trusted friend or family member.  Don’t be ashamed to admit anger or exhaustion.

·        Discuss important decisions with someone first.

·        Contact a support group.

·        Find humor each day; the “M*A*S*H” approach to dealing with tragic events really can alleviate stress temporarily.

·        Find a safe release -- exercise, music, meditation, walking outside, or even screaming into a pillow!

If these feelings persist for a period of more than two weeks or if you experience thoughts of suicide, caregivers need to seek professional help without delay.  Depression deserves the same care that would be given to diabetes or high blood pressure.  The physician or therapist may recommend medications and/or therapy.

If you care about a family caregiver undergoing severe emotional strain, please do not try to mask the seriousness of the situation with soothing statements like, “You need to keep calm,” or “You need to have faith.” Faith does not preclude depression. Instead, concentrate on being a good listener, withholding judgment, and supporting the caregiver’s decision to seek professional help.

      

The Caregiver’s Third Right

Part of a continuing series.

I have the right to maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

Finding a way to steal 5 moments alone each day can be an incredible challenge for any family caregiver.  Finding an hour or more outside the home too often feels like mission impossible.

Yet having the ability to be away from home for extended periods of time is absolutely vital for the family caregiver.  A “refreshed” caregiver will ultimately be a more attentive (and less exhausted and frustrated) caregiver. 

To maintain their own life (and sanity), the family caregiver must plan to have free time.  Even though it will no longer come naturally or spontaneously, free time is possible.    Let me suggest three simple steps:    

·         First, consider what was enjoyable to you before and what you would most like to do again.  Was your favorite “time out” having dinner with friends, gardening in the yard, going to church services, window shopping at the local mall,  or golfing with your league?  Even in the best of times, our calendars don’t permit us to do everything our hearts desire, so pick your priority:  which of these activities would mean the most to you now?

·         Second, what plans need to be in place for you to succeed at this outing?  Can your loved one be left alone for an extended period (one-to-three hours), or do you need to make arrangements for someone to stay with them?  Will the individual have to assist with meals, medications, or treatments?  What plans can you put into place to make this experience easy and comfortable for everyone involved? 

·         Finally, walk out the door without guilt. Leave specific instructions, contact numbers, and well-labeled medications before leaving the home.  Inform everyone involved of the approximate time of your return.  Take a fully charged cell phone with you as a security blanket -- but calling home should not become the focus of your time away.  Discipline yourself to leave home mentally as well as physically.  Treat this as a “time out” – respite for yourself.

When we as caregivers can articulate our needs for private time, and do just a bit of advance planning, things can actually work toward everyone’s best interests. 

Let me share an example:

Ned was a kind and courteous elderly gentleman who was the sole caregiver for his wife, Lucy,  who was beginning the last stages of Alzheimer’s disease.  They had two adult children, one who lived locally and one who lived out of state.  Their sons had successful careers and families of their own so they did not visit often but called regularly.  Ned did not want to bother them by asking for any assistance; when he had attempted to in the past, he found that one of his children was always busy with other activities, and the other felt his mother should be placed in a facility.  So Ned was determined to handle things on his own. 

Lucy had begun to fall frequently and the need for constant vigilence was beginning to take a high toll on Ned’s health.  Their doctor recommended hospice for additional support for both Lucy and Ned.  I had been involved with them for several weeks and while Lucy was adjusting well to our interventions, Ned began to appear more and more depressed; at times, he was angry that strangers seemed to care more about Lucy than her family did.  A vital part of hospice is caring for the caregiver, so each visit to their home also included time with Ned to evaluate his needs, concerns and well being. 

In one of these conversations, I asked Ned what he missed most.  His immediate reply was, “I just want to be able to go to Mass again but the kids are all busy and I can’t leave Lucy alone that long.”  I offered to come over that Sunday and sit with Lucy so he could go to Mass reassured that she was safe.  He hesitated but finally agreed.  It was an easy wish for me to fulfill.  Ned went to Mass reassured that Lucy was safe at home.  When he returned from Mass, I could immediately observe that his demeanor had significantly improved, and that his anxieties were eased.  We chatted and I offered to do the same for him the following Sunday, only this time I told him to stay and enjoy the community spirit of coffee and doughnuts that followed the services.  He laughed and cried at my insistence.

This simple act promoted important changes to their family, as well.  When Ned’s son found out that the nurse was willing to come and stay with his mother on her day off, he and his daughter began to offer to do the same each Sunday.  This brought an even greater measure of peace and joy to Ned.

  

  

The Caregiver’s Second Right:

I have the right to seek help from others even though my loved ones may object. 

 I have the right to recognize the limits of my own endurance and strength.

One-third of all family caregivers are responsible for providing around-the-clock care, and many had no choice in taking on this role.  Caregiving falls most heavily on nuclear families and most often on women. This means little to no free time, and quite often requires making changes in  employment, housing and relationships with others.

It is often hard to admit that we cannot do it all.  We believe we can, and admitting that we need help often feels like admitting defeat.  But just as it takes a village to raise a child, it often takes a village to care for an ill, injured or elderly loved one.  There are many resources to help, but we may need to overcome a few obstacles first.

One obstacle often placed in the path to obtaining assistance is the individual who is relying on you for care.  He or she may not want anyone else’s help and they may not recognize the toll that caregiving can take on their caregiver.  This barrier is most often seen among the elderly and those who live in rural settings who have lived lives of self-reliance.  They may be embarrassed to admit their limitations and needs to outsiders; many are very private individuals; and many are concerned about the costs of additional care or even the security of having “outsiders” inside their home. The suggestion that additional help may be needed is often best received when coming from an “outsider,” such as a health care provider. 

Despite these obstacles, you need to remember that you are not alone -- you just need to know where to turn for help.  To avoid being overwhelmed, start by making a logical plan of action.

Identify your needs:

Make a list of what, when, where and how you could use help.  For example:

·  Do you need help understanding all the medications, treatments, or equipment that may be involved in the care?

·  Perhaps your needs relate to not being able to leave the house- do you need someone to run errands, or drive you and your loved one to appointments?

·   Do you have outside commitments and need someone to stay in the home with you loved one as a safeguard while you are gone?

·  Are you are unable to do more strenuous work, such as cutting the grass, shoveling snow?

·  Do you need help bathing, repositioning or moving the individual? Or,

     ·  Are you burning out? Do you just need a break -- a chance to get out of the house?

Identify your options:

·   Who can you ask for the help and advice you may need? Many turn to other family members, friends, neighbors, church members, and co-workers to seek information on resources in your area, to get reliable references, and to understand costs and limitations.

·  You may find a wealth of free caregiving information and pamphlets at the entrances of grocery stores, drugstores and doctors offices.

·  Others obtain advice and guidance from support groups, the internet, and blogs, such as this one.

·   A telephone call to your regional office on aging can help you obtain literature on available resources, or help you arrange for an in-home evaluation.  These evaluations are a helpful source of answers on home help options, supplies such as personal care items, and dietary supplements. Many of these services are income-based.

·   Seek professional advice.  Make a list of your questions and take them with you to the next doctor’s appointment.  If the doctor is too busy to answer your questions, nurses and social workers are also able to help – and will be an invaluable part of your caregiving support team.  Some caregivers make an appointment just to discuss their questions and needs with the doctor. 

·   Home care, hospice or palliative care services can also be arranged and require physician approval.  (I will explore these options further in another entry)

·   Some nursing facilities offer respite services for short stays to assist the caregiver if fatigue, illness or other family needs require the caregiver to be out of the home.

·   Adult day care is another option for those caring for individuals with memory disorders.  Some even offer transportation.

·   The Veterans Administration (VA) offers many benefits to veterans.  You can expedite services by pre-registering with the VA.

·   Insurance companies are also resources.  Request a case manager who can be a consistent source of help, guidance, and trouble-shooting for you and your loved one.

Verbalize your needs:

As hard as it is, caregivers need to ask for help.  Your friends and relatives may recognize that you need help, but they may not know what they can do.  Others may not even realize you need assistance.  It is essential that you ask for what you need, and it equally essential to have a “back-up” plan if for any reason you are unable to care for your loved one. 

·   Sometimes, it’s easier to ask “strangers,” such as home care agencies or health professionals, for help. 

·   Sometimes, we hesitate asking long-distance family members for help – and we fail to recognize how much they want to be involved.  If they cannot visit, they may be able to offer financial assistance.

·   Sometimes, when out-of-town family members come to help, we forget they are not guests.  Remember:  they are there to be of help to the loved one and relieve your stress – not to be entertained. 

·   If you have a host of family and friends offering care, develop a calendar of who is coming, and the specific help you’ll need from each.