Family Reunions

"Family faces are magic mirrors. Looking at people who belong to us, we see the past, present and future. We make discoveries about ourselves." ~Gail Lumet Buckley

One of my co-workers stopped by my office today to discuss summer vacation plans.    Sophie told me that she and her three sisters had just decided to take their mother to visit her mother’s sister in South Carolina.  Sophie’s Aunt Lois was rapidly beginning to decline from Alzheimer’s disease and over the holiday weekend her mother had announced to her daughters that she definitely wanted to go to her sister’s funeral in South Carolina when the time came.  Sophie and her sisters immediately chimed in, “Why wait?  Let’s go now while Aunt Lois will be able to enjoy the visit too.”   Their mother was delighted with the proposition and they have synchronized their schedules and plan to head south before the summer is over.  They have planned a great reunion for these sisters.   

Recognizing that time spent together while we are still able to enjoy each other’s company, to listen to their voices and to see the smiles in our loved ones eyes are gifts that no one can take from us.  Time is precious and taking the opportunity to visit with a loved one should not be delayed if at all possible.  Circumstances may be unavoidable and a face-to-face visit may not be viable but there are other options; videotape your children playing for their grandparents to enjoy, send a digital picture frame filled with family photos taken over the last year for long-distance relatives to view or record a favorite past experience you shared with your distant loved one and send it off -- not only will it invoke memories they will delight in the sound of your voice.   

Moment of Remembrance

"We cherish too, the Poppy red
That grows on fields where valor led,
It seems to signal to the skies
That blood of heroes never dies" ~ Moina Michael

Memorial Day, originally called Decoration Day, is a day of remembrance for those who have died in our nation's service. This year we marked the passing of the last known combat veteran of WorldWar I, Claude Stanley Choules. The remaining World War II veterans are also rapidly decreasing in number.

Multitudes of veterans come home but bear the physical, phychological and emotional wounds of wartime. As caregivers, we have seen the effects these scars may have on the well-being of the individual and their loved ones. My beloved Uncle Frank was one of those brave individuals. He served in the army during World War II, fighting in France and earning a purple heart for his physical injuries. Frank entered the service as a quiet, gentle and loving man, he returned with those same qualities as well as life-altering emotional scars of war. 

Uncle Frank could not leave the trauma of war behind, he found comfort in alcohol.  Long before post-traumatic stress syndrome was recognized as a legitimate post-war injury for veterans, these battle scars went unacknowledged by the govenment and many found comfort escaping their nightmares in other ways. Uncle Frank asked for nothing from his government and his bravery persisted; he went back to the induction board and requested that he be sent to Korea instead when his younger brother, Nick was drafted. Frank never wanted his brother to have the experiences he did; the military refused his request.

Uncle Frank was a hard worker all his life, he loved his family and especially his nieces and nephews. I fondly recall that we always had to kiss him hello and goodbye on both cheeks as the French did. We all became a caregiver in some capacity during his life-- whether it was providing a safe ride home, expressing a reassuring comment or staying near his bedside in his last hours.

Today, our military and veterans need to be recognized as caregivers too. They bravely venture to foreign lands to maintain our safety back at home. We owe them an immeasureable depth of gratitude. Please take a moment from your caregiving responsibilities to remember a veteran who sacrificed their life for our freedom. Seek out the opportunity to thank a member of the military--current or past-- for their service to our country. 

I would like to thank those in my family who served our nation: my father, Arnold; my uncles--John, Mike, Frank, Nick, Dominic, Tom, Paul and John; my cousins--John, Gary, Dennis and Nicky; and the other special individual in my life--Bill, Jay and Gary.
　

Garden Therapy

“He who plants a garden plants happiness.” ~Chinese proverb
 

Recent studies have shown that this ancient wisdom holds true today.  According to Eva Shaw, PhD, author of Shovel It: Nature's Health Plan, gardening reduces stress, lowers blood pressure and helps fight depression. A study done by Kaiser Permanente showed the brainwave activity of a gardener mirrored that of someone praying or meditating.

For many with disabilities or illness; too often the easiest form of entertainment is television or videos. Gardening gets them away from the screen and fills some of their day with gratifying and tangible work.  Engaging others in gardening can give both of you a sense of purpose and broaden the scope of your relationship.

Gardening is one of the non-prescription interventions that has been shown to slow the rate of decline with those who suffer from Alzheimer’s disease and other forms of dementia.  Dr. David B. Carr, a geriatrician at Washington University in St. Louis feels that those individuals who are given constructive activities to perform actually do better in the long haul and staying active can also decrease the repetitive nature of their conversations.

The garden does not have to be large; raised beds and container gardens are very popular nowadays and require less preparation and physical strain.  Working in the dirt, whether you choose to grow flowers, vegetables or herbs to grow can be very rewarding.  The simple act of caring for the garden and watching the fruits of your labor blossom then ripen can renew your spirit and sense of wonder at the world around you.  The smell of tilled dirt, a home-grown tomato or just-picked basil can be a reminder of past experiences or create new memories that can be look back upon fondly.

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Caregivers reap even more benefits when they introduce gardening into their caregiving mix. As a caregiver, you can actually step away from the focused, everyday caregiving process for a while as you do something totally pleasurable whether alone or with a loved one.  Treat yourself to this gentle backyard therapy that will continue to offer rewards all summer long.

Sickness, Stigma, and Social Segregation, Part 2

"There is no fear in love, but perfect love casts out fear; for fear has to do with punishment, and whoever fears has not reached perfection in love." (1 John 4:18)

When an individual and their caregiver are coping with an illness or disability that bears a social stigma, education is essential – for the patient, for family caregivers, and for friends and neighbors.  Education quiets fears and prejudices, roots out misconceptions, and leads to greater acceptance.  Misinformation (particularly via the internet) is common, so it is important to learn the facts from a credible source; the health care provider and reliable internet websites ( www.nih.gov and www.mayoclinic.com are good choices).

Disease-specific support groups can educate and diminish your feelings of isolation and shame; these support groups provide a network of friends when other friends choose not to be available.  You, too, can become a source of information if you and your loved one chose to share your experiences with others.  The more we learn about a disease and the more we can observe those who face it, the less likely we are to stigmatize.  When you choose to share information about your disease, you do not have to answer inappropriate questions such as, how many sexual partners did you have, how much did you smoke, or how much longer will he live?
 

Learn to protect yourself and your loved one emotionally and physically. Disabled individuals are often openly stared at or ignored rather than be appropriately acknowledged.   Try never to put your loved one in the position of being embarrassed because of their disease process.  If you know they hate to go out in public because of a symptom or a functional limitation, do not force the issue.  If you, as a caregiver or family member, are embarrassed by these same things accept, it for what it is and don’t force yourself.  Your loved one is often better off if someone else accompanies them, so that you discomfort does not become their discomfort, too.  Continuing to include your loved one in outings as long as possible is emotionally healthy for all involved.

The value of human contact can never be underestimated.  Talk to each other, laugh and cry together. Touch each other gently and lovingly as you did before.  Touch is healing:  it allows us to comfort and bring peace and pleasure to those we care about.  Family and friends should be encouraged to touch a hand or share a hug. There are some diseases that require protective measures for caregivers.  If you have questions about contact, ask your trusted healthcare professional about appropriate safeguards – but don’t withhold contact out of fear.

When a loved one is ill, they may give little thought about what their family caregivers are going through.  Share your feelings in an open, honest, but gentle manner.  If you are uncomfortable with some aspect of caregiving, share your feelings and find others who can assist with these tasks.   

Sickness, Stigma, and Social Segregation

“If you judge people, you have no time to love them.”  Mother Teresa of Calcutta

My mother recalls when her older sister, Kay, had smallpox.  A bright red quarantine sign was posted on their front door and the children with whom they had played just days before now crossed to the other side of the street to avoid walking in front of this “infected” house.  Social isolation was a vital and appropriate part of controlling this highly contagious and deadly disease. 

Decades later, my mother’s family again experienced an episode of social isolation, but this time for a non-contagious disease:  my grandfather’s cancer.  Stomach cancer is not contagious, but in the early 1960s society had a palpable fear of “catching” cancer.  That fear was fueled in large part by popular media; in a cover story in 1962, Life magazine declared:  “Cancer May Be Infectious.”  Researchers had just identified a particular cancer as a virus, and the conventional wisdom of the time was that all viruses were highly contagious and incurable.  Speculation soon led to fear:  could quarantine prevent the spread of cancer? 

At the height of the AIDS outbreak in the 1980s, I was working in ICU where many young men dying alone with this disease.  Because so little was known about AIDS and so much media coverage was again spreading fear and ignorance, some of my coworkers became so fearful of contracting the disease that they would limit the comfort that human touch can bring.  They refrained from doing the things they would do with any other ICU patient, such as offering a gentle and reassuring touch on the arm or spooning ice chips over cracked lips and parched mouths.   Those of us who followed the medical precautions of those times while still maintaining compassionate contact with AIDS patients did not “catch” this disease – and we were able to experience the quiet peace that comes from comforting others in desperate need.  

Today, thanks to breakthrough research and medical advances, we know so much more about the causes of many diseases.  We know, for example, that some types of diseases are contagious and potentially deadly (AIDS, TB, influenza) but we can easily learn the facts about how these diseases are contracted, how they spread, and how they can be prevented and treated.  Yet despite all we know, we still see far too many instances of social segregation, isolation, and under-treatment for diseases that are not contagious – such as ALS (Lou Gehrig’s Disease), MS, cancer, and Alzheimer’s Disease. 

Sometimes the “social segregation” expresses itself most clearly as stigmatization:  we believe the patient (and his family caregivers) are responsible for their disease because of poor lifestyle choices or personal weaknesses.  Consider:

·        For years, cancers of the breast or testicles were silent killers because talking about these diseases was too intimate or too lurid for some, including doctors and nurses.

·        Science has clearly demonstrated that there is a genetic predisposition to alcoholism, yet so many continue to shun the alcoholic and his family because we believe they simply lack willpower or have made poor moral choices. 

·        Too many still believe that HIV/AIDS is contagious through any contact – and that the patient’s suffering is God’s punishment.

·        Too often the first reaction to hearing someone has lung cancer is to ask, “Did he smoke?” and then proceeding as if this makes the suffering somehow less acute (or the sufferer less worthy of compassion).

When society treats some diseases as the inevitable consequence of personal weakness or bad choices, it limits our sensitivity, compassion, and even physical presence.  

All disease is psychically isolating for patients and their loved ones, because no one can really know the extent of another’s suffering. When we add social isolation and stigmatization to the mix, we do a horrible disservice to the suffering, to their family, and to our own sense of humanity.

Take the First Step

Experts on aging, concerned about the 77 million baby boomers and the rapidly growing older population, feel more people need to adopt a commitment to physical activity. The epidemics of sedentary lifestyles and obesity in this country and the additional epidemic of an aging nation are extremely worrisome on many levels. The need to maintain independence and mobility of older adults is emerging as a national health priority.

The University of Florida is one of many campuses doing pharmaceutical research to find other ways to stop aging, yet so far there is nothing more promising than physical activity.   “Exercise is the closest thing we have to a fountain of youth," says Marie Bernard, deputy director of the National Institute of Aging. "With all the gains we've made over the years allowing people to live longer, it would be nice if more people would take advantage of exercise to improve the quality of a longer life."

Physical activity is important the older we get as a buffer against many age-related problems, including dementia and the muscle and bone loss that ultimately leads to frailty and loss of independence. Exercise also reduces the risk of getting heart disease and type 2 diabetes and helps prevent depression.  Individuals who have remained active and fit heal faster too.  The guidelines established for older adults by the U.S. Department of Health and Human Services require 150 minutes a week of moderate-intensity physical activity. More than 62% of adults do not meet the exercise guidelines set by the Centers for Disease Control and Prevention.  

Many fear exercise; they are afraid it will hurt or they will sustain an injury.  Others are just unmotivated.  The University of Maryland School of  Nursing is in the midst of a research project on how to motivate older adults to exercise; the average age of the participants in this study is 90.  They are being encouraged to exercise daily with onsite visits and many have been able to discard their walkers to ambulate independently, some have been able to progress to treadmills and stair-step machines.

Walking is the one form of physical activity that most of us can do; it requires no special equipment or travel time. It is also the least stressful exercise for the body.  Set attainable goals to start; walk around the block 3 times a week, park the car twenty feet further from the store entrance, push the shopping cart down every aisle of your local grocery or drug store--these extra steps count. 

What Hospice Won’t Do

“Seeing death as the end of life is like seeing the horizon as the end of the ocean.”  David Searls (Biologist)

A popular magazine recently featured an article by a writer who described the last days of her mother’s life as she rapidly progressed toward the end stages of a terminal neurological disease.  Her mother wanted to end her own suffering and had sought her daughter’s advice with the final act.  This difficult request is not as unusual as one might think and many family members make illegal pacts with each other as they age or suffer from serious illnesses and disabilities. 

The statement that caught my attention and provoked my ire was the author’s response to her mother:  “There are ways…talk to hospice.”

As an experienced hospice nurse, I was appalled that a national publication would not conduct due-diligence fact-checking when running such an article.  It is true that there were rare instances when, as a hospice nurse, I was approached by either the dying individual or a loved one asking how the end of life could be hastened.  But it is imperative that the role of hospice be clearly understood in these circumstances:  hospice is a family-centered service designed to meet the physical, emotional and spiritual needs of an individual during the end stages of their disease process. The focus of hospice care is comfort and the control of pain and symptoms when curative treatments such as chemotherapy are not continued.  Hospice services provide hands-on care as well as teaching and emotional support to caregivers. But hospice does not at any time or in any manner assist or hasten the death of the individual.  Hospice health care professionals do not administer deadly doses of medications or teach loved ones how to give mortal doses.

I am not an advocate of prematurely ending life, yet I know there are individuals who consider this action and I understand the pain, fear, and agony that leads to this life-ending decisions.  I cast no judgments.  But questions and concerns in these morally charged matters must be directed to the physician providing care for further counseling.  For the faithful, discussions with clergy are strongly recommended.  Many individuals and families also seek legal counsel.  There are no easy answers, but many terminally ill individuals and their families will find resolution and peace simply by understanding that hospice will control their pain and symptoms provide the entire family the much-needed support as end of life approaches.

To ensure the greatest benefit, hospice services should be initiated as quickly as possible with a life-limiting diagnosis is made initiation of hospice services as early as possible with a life-limiting disease process allows for the greatest 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.

How Do You Cope?

This afternoon, I had the opportunity to meet my parents for a leisurely dinner.  On the solitary ride home I had ample time to consider their current health care situations; Dad’s battle with cancer and Mom’s chronic and debilitating digestive problems.  I considered how they are coping and have coped with health care issues in the past.  This led my thoughts to reflect on the variety of coping mechanisms many of us employ when facing health care issues: 

• There are those who choose to relinquish their concerns to a higher power; often utilizing the “whatever will be, will be” frame-of-mind.  Is this really the most effective coping mechanism or is it an abdication of responsibility?

• Others choose to “put on a good face” for those around them; often pretending not to be worried or keeping information from others because if they don’t appear concerned they must be relieving their loved ones from anxieties.  But can this blind-eye coping lead to poor decision making and priority setting for all involved?

• There are those who organize or reorganize their health care decisions; making their well-being a top priority by changing diet, improving exercise regimes, increasing medication compliance and altering lifestyle choices.  Will they be able to maintain these new positive choices over a lifetime or are the changes only a stop-gap measure until the crisis is over? 

• Others worry about everything; each and every ache and pain is cause for grave concern.  How will they cope if something serious occurs and why are they expending so much emotional energy over often trivial concerns?
  

In reality, most of us vacillate between any or all of these coping mechanisms, some of us may have even developed a more unique skill set of our own to cope with health care issues.  Will you share what has proven most effective for you or your loved one?

Independence Days

We have lived next door to Sara, our 91 year-old neighbor, for several years now and we have always known her to be a very independent, active and healthy woman who drove around town in her little red car between senior centers and shopping malls.

Two weeks ago, Sara’s daughter Carol knocked on our front door.   She was distressed because Sara was in ICU.  Only at that point did we learn that Sara had not been feeling well for some time, but since she had no specific complaints she saw no reason to bother anyone --  including her physician.  Sara also had a friend with similar complaints who was diagnosed with cancer; for Sara, the fear of discovering that she, too, might have cancer prevented her from taking action.

 Sara and her daughter had been out to lunch when she became acutely ill and she was rushed to the hospital.  After many tests, Sara was diagnosed with a bleeding ulcer and required multiple drug transfusions.  She is now stable and will be returning home in several days.  The thought of Sara going home alone terrifies Carol, for good reason.

Sara has always been determined to remain in her home, alone, despite her increasing age and her home’s increasing hazards.  Her children and neighbors are willing to help with anything that needs doing, but Sara is unwilling to make the changes that might make her safer in her home.  Several times a day, she climbs the steep stairs to her bedroom despite everyone’s expressing concerns about the risk of falling.  Sara’s bathroom is on the first floor and an unused parlor off the living room could be converted into a bedroom, but Sara won’t hear of it.  Nor will she get an emergency alert system – even though her hearing deficit makes contacting her a frustrating and fearful experience at times. Sara is fully aware of the risks she is taking; she doesn’t want to cause concern to her children and neighbors, but she values her independence above all else – and for Sara, independence often expresses itself as a defiant resistance to change. 

Carol feels terribly guilty that she did not recognize something was wrong with her mother.  But Carol also feels frustrated.  Because her mother is completely resistant to adjusting her living conditions, Carol is having to radically alter her own lifestyle, incorporating much more frequent “check-in” visits with Sara into her daily routine. 

Many family caregivers grapple with a common reality:  their aging, disabled loved ones desire their independence at all costs – and quite often to the point of open defiance and illogic.

The hardest thing for us to accept is that unless our loved one has cognitive or physical disabilities that prohibit them from living alone or unless their living arrangements have been warranted legally unsafe, our options for intervention are extremely limited.  We cannot force a change in their living arrangements; we cannot mandate common-sense safeguards.  As a result, poor outcomes that could be prevented – such as injuries, falls, and emergencies – occur. 

We can easily feel guilty that we aren’t doing enough.  Our guilt rapidly deteriorates into frustration and anger that we just can’t convince our loved one to change and adapt.  Left unchecked, these emotions can sour our relationship with our loved one.  We need to recognize that we are reacting to our own guilt.  Then we need to figure out what we can change and what we can’t.  If we can introduce incremental change into our loved one’s household or routines, we should do so.  But the reality is that we will not control everything, or even most things, in their lives.  And if serious consequences occur, we must learn to forgive ourselves and our loved ones.

Sometimes, the very best we can do is love someone enough to let them be as independent as possible for as long as possible.  That’s not an insignificant gift, because it usually comes at great cost to our own peace of mind. 

Long-Distance Caregivers, Part 3

For long-distance caregivers, a visit to an elderly or ill loved one often feels more like a cross between a business trip and emotional roller coaster than a homecoming or reunion.  There is only so much that can be accomplished each visit, so it is important to set realistic goals.  Balance is key.  In weighing the importance of multiple priorities, tilt the scale in favor of “visit” time with your loved ones.  Those opportunities are irreplaceable.


The timing of your visit can be important.  It’s beneficial if your visit coincides with your loved one’s appointment with his/her primary physician.   If that’s impossible, another option is making an appointment to meet independently with the doctor, with written permission from your loved one.   Many long-distance caregivers plan their visits to give the primary family caregiver a much-needed break.  Frequently, these visits become focused on getting things settled for a loved one; remember to make time to enjoy each other’s company.


As you plan your itinerary, take the time to:

    * Have a discussion with the primary family caregiver, if there is one.  Face-to-face conversation provides an ideal chance to raise and resolve issues, identify specific ways you can help from a distance, and develop contingency plans for long-term or crisis care for your loved one.  Discuss options for sudden illness, rapid change in condition, or the need for more assistance.


    *  Meet others who play roles in your loved one’s life:  the pharmacist, the homecare nurse, neighbors, church members and friends.  You are building relationships that provide a safety net for your family member; obtain their contact information and share with them the easiest way to reach you.  Be sure to obtain their contact information and share your own.


    * Closely observe your loved one’s condition.  Be prepared for the subtle and not-so-subtle changes that cannot be detected over the phone.  Those changes also include behavioral changes, unusual forgetfulness, or mood swings.

   
    * Carefully observe your loved one’s surroundings.  Identify:

          o Possible falling hazards – loose throw rugs, poor lighting, and unsafe clutter.

          o Safety concerns – lack of grab bars in the bathroom, hard-to-manage locks, and steps           that should be replaced with a ramp.

          o Personal care needs – dirty or disheveled clothing, stale urine or stool odors in furniture or carpeting.

          o Household management needs – lack of food in the refrigerator or cupboards, excessive clutter or filth, evidence of hoarding, stacks of bills and mail, piles of laundry.

          o Healthcare risks – medications in disarray, missed physician appointments.
         

It’s important to remember not to handle your observations as an investigation or interrogation; when you view your loved one’s surroundings with the fresh eyes of a visitor, it can be easy to offend your loved one or the primary caregiver.  It’s especially important to remember and recognize the difference between an individual choosing not to care for his/her own needs (self-neglect), the inability to care for oneself, and circumstances of elder abuse.


When issues are identified, our ill or elderly loved ones may choose not to acknowledge them or may become angry when approached.  It is important to respect their privacy and independence while also obtaining current and correct information from them.  These are delicate conversations for all family caregivers; it is better to begin them by asking respectful questions or offering gentle suggestions rather than making judgments and criticisms.  Don’t impose your standards, preferences, or opinions.  You may feel strongly that you loved one needs a new doctor, changes in diet, or living assistance; you will make more gains by loving persuasion, rational discussion, and patience than by force, assertion, and pressure.


Some of our loved ones are willing to discuss their healthcare wishes and legal and financial standing with us.  But sometimes they prefer to share this information with an attorney or physician.   Both options are legitimate choices that should be respected.  The important thing is that your loved one expresses his/her preferences to someone.


Can the issues you’ve identified be corrected during your visit or is personal care, housekeeping, home improvement or lawn care necessary?  Does a health care professional need to be involved?  Some long-distance caregivers hire a geriatric care manager/healthcare advocate to identify the needs and oversee the care your loved one may need.  If these arrangements are necessary, aim to make them before the end of your visit to assure they will be implemented in a timely fashion, and recognize that continuous follow-up may be required.


Above all, take care to not make promises that you may not be able to be keep.  For example, in an attempt to reassure a distressed love one, it is easy to make a commitment that he or she will never have to leave their home; despite all our effort, there may come a time when remaining in an independent living arrangement is no longer be an option for your loved one.

Happy Mother's Day

I want to thank the three most important women in my life-- my maternal grandmother, Johanna, my mother Dorothy and my sister, Stephanie-- for teaching me the three most important things in life; the love of God and family and the strength of perserverance.

I wish you all a Blessed and Happy Mother's Day.

Long-Distance Caregiving, Part 2

“I live 12 hours away from Mom and Dad; how can I help them on a daily basis?”

Whether you live 12 hours or 1 hour away from an ill or aging loved one, it is easy to feel isolated or overwhelmed.  Rest assured that you are not alone.  The National Institute on Aging estimates that 7 million Americans are long-distance caregivers – and as is the case with most caregiving statistics, that number is probably under-estimated.  

As you start the caregiving journey, your first essential steps are planning and preparation.  Long-distance caregivers must map their courses carefully and learn how to recognize and avoid detours and how to find alternative routes when delays or roadblocks occur.  And they will need to do these things virtually or through others.  

Information is your biggest navigational aid.  You can research your loved ones’ disease or condition online, at your local library, or through your local disease-specific support group immediately upon diagnosis.  The Internet is a powerful resource, but like all resources, it must be used intelligently. Especially when reviewing information online, it is really important to check your source.  Who is responsible for the content?  Is the author credentialed or certified…or selling something?  Is the information dated?  Are the opinions fact-based, or a matter of personal opinion?  Do multiple sources corroborate the findings?

The best source of information is likely to be your loved one’s physician.  Ask your loved one to sign a release form allowing the doctor to discuss their information with you.  With the permission of your loved one, seek an appointment – even if by phone or email – to obtain more detailed information.  The doctor or a member of their medical team may even arrange to provide email or telephone updates to you because you live out of town.  The sooner you make these arrangements, the easier your journey will become.

Organization is the next step.  Many caregivers find that keeping a journal or compiling a portfolio notebook that can be divided into sections is every bit as helpful as a GPS system in the car:

•              Dedicate one section to documenting dates, symptoms and diagnoses.  Insert a calendar to track appointments.  List the medications--both prescribed and over-the-counter drugs-- that are being used; include the doses and scheduling times.  This information may be hard to ascertain if you only rely on a loved one, but it can be verified by the pharmacy or physician’s office.  Even if you are not the primary caregiver, being organized in this manner makes a tremendous difference. 

•              Vital information deserves its own section in the notebook.  If available, document and/or store full legal names, places and dates of birth; marriage and divorce certificates; social security numbers and military service numbers; stocks, bonds, and deeds; the date and place of military discharge and discharge paperwork (DD214);  insurance, credit card, and bank account information; recent tax returns; and the location of safety  deposit keys.  If this information is not available, document where it can be found for future reference.  Your loved one may have an attorney who handles their affairs, so you need a contact number for that individual; or, you may consider hiring an attorney to assist as each state has its own laws.

•              Develop a personalized phone book.  List the names, specialties and contact numbers of physicians involved in their care.  Also list the numbers of neighbors, close friends, clergy and church members.  Make sure that all these contacts also know the best way to reach you.  At least one family member should have written permission to receive medical and financial information and this usually involves a signed release of information form.  

•              Use a section of the portfolio to create your own manual of the region’s resources.  The information can often be obtained from the internet but a local phone book is invaluable especially if you have been living away from the area for any length of time.  The directory should include senior centers and services, professional caregiving and in-home help agencies as well as recommended and visited assisted living and skilled nursing facilities.  The physician should be able to offer direction with many of these services.  There are also national agencies that can assist; the National Respite Network and Resource Center @ www.archrespite.org  is a source of area respite information for caregiver relief or short- term placement until long term arrangements can be finalized; the National Hospice and Palliative Care Organization@ www.nhpco.org  offers information on these agencies in a specified area and the Eldercare Locator @ www.eldercare.gov provides guidance in locating senior resources. 

•              Include a copy of advance directives, living wills, and power-of-attorney documentation for ease of access.  Another copy should be kept in your loved one’s home and their primary physician should have one for the medical record.

•              Keep a section for questions and answers.  

In addition to the notebook, consider technology your best enabler.   If your elderly parents don’t have cell phones, purchase a plan for them and program it with the contact numbers they need.  If your loved one is tech-savvy, purchase a video-cam system so that you can have regular visits with them and actually see them.  If your loved one is in a nursing home, see if you can install a private phone line in their room so you can reach out to them directly.   

A few simple physical preparations are important for the long-distance caregiving journey.  For example:  keep a bag packed and ready to go.   It’s impossible to know how quickly you may need to visit, so having your essentials ready to go will help you enormously.  Make sure you take your notebook journal with you when you visit, and update it regularly with information, questions, and impressions.

Finally, if you are employed, talk to you employer as soon as possible about the caregiving situation you are facing.  Most employers will be able to explain any company-specific benefits available to you.  Ask in particular about FMLA- the Family Medical Leave Act- to protect your own employment status when you need to be away.

Long-Distance Caregiving, Part I

Family caregivers routinely “go the distance” with an ill or elderly loved one.  But what if the family caregiver also must “bridge the distance” because geography separates them from their family member?

Family caregivers have long been typecast as middle-aged women – usually wives and daughters -- who reside near or with the individual needing care.  Reality has sharply blurred this picture, however.  Family caregivers now increasingly work outside the home; reside farther from the person needing care; and are, in growing numbers, men.  Gender, income, age, social status, employment, physical location -- none of these prevent an individual from taking on caregiving responsibilities. 

Our economy is significantly increasing the ranks of caregivers who have moved away from their family members – especially elderly parents -- for job opportunities.  These caregivers are usually not able to move back home for any length of time when a loved one falls ill.  Long-distance caregivers face the same emotional and financial concerns as family members who live near by, but their roles and demands are uniquely challenging.

Consider, for example, that long-distance caregivers must:

·         Learn to discern whether a loved one’s condition is worsening simply by listening to changes in his or her voice;

·         Develop relationships of trust with doctors, nurses, therapists, home-health aides, pharmacists, and clergy we may never have met;

·         Coordinate medical care – including painful end-of-life decisions – from 3,000 miles away;

·         Recruit a support network of neighbors, housekeepers, and delivery personnel who can check up on our loved ones when we cannot be there;

·         Rehearse crisis and catastrophe plans.  What is our first response if Dad doesn’t answer his phone within 3 hours?  If his neighbor calls at midnight to report that he has fallen?  If a cousin calls saying Dad appears to be confused and disheveled? 

·         Develop detailed back-up plans for when we must be away from home to care for our long-distance loved ones.  Who will cover for us at work?  Who will take care of our kids after school?  Who will watch the pets?

·         Set aside emergency cash reserves for when we need to book an emergency flight home; when we have to help our parents quickly put their home on the market because they can no longer manage it; or when we have to pay for housekeepers to help clean the family home?

·         Cope with unique kinds of guilt, such as the guilt of not being there each day; the guilt of relying upon others; or the guilt of not being able to make radical changes to our own lives.

Medical advances have transformed caregiving into a long-term responsibility.  The caregiving journey may begin with a vague feeling that “something isn’t right” with Mom or Dad (or both); continue through diagnosis and treatment; and extend until recovery or death.  All caregivers must learn how to navigate each phase of this journey, while juggling their own personal and family lives, professional lives, and financial obligations.   For long-distance caregivers, these navigational skills are more important than speed or proximity. 

Arnie's Army

Individuals are often faced with difficult situations and complicated decisions that must be made in a relatively short frame of time.  My parents were among these ranks again this week.   They have been coping with extreme levels of stress since Dad's diagnosis; they continue to amaze me more and more each day with their faith in God, inner strength and determination.

They met with the oncologist to discuss a new plan of treatment since the first round of chemotherapy had to be stopped prematurely when a complication occurred.  Mom went equipped with a well-prepared list of questions my sister and I had developed and the determination to get answers.  Dr Lori, the oncologist took the long list of questions from my Mother’s hands and wrote the answers to each query.  She also gave them in-depth written information describing the qualifications of the surgeon she was referring them to in Cleveland.  Several days later, they met with the specialist at the Cleveland Clinic to discuss surgical choices and outcomes.  He spent time with them; discussing options, risks, complications and prognoses.  The same list of questions was answered.  His explanations were presented in terms my parents could easily grasp and they were comfortable with the information they received during the meeting.  Despite collecting an overwhelming amount of medical data, they had a great sense of confidence in the doctor who would perform the surgery.

At this time, I can only thank both of these doctors from a distance.  They have demonstrated respect, honesty and understanding towards my parents and the situation they were facing.  Dad has made his decision and he will have surgery as chemo alone will not destroy the cancer.  Our team of support has grown again and we know that every additional reinforcement makes our ranks stronger. 

Immeasurable Losses

Waking this morning to the news of the death of Osama bin Laden brought many emotions to the forefront in our nation; we exhaled a sigh of relief, we stood taller in our sense of pride of our intelligence and military communities and we felt the pain of loss anew from that morning in September nearly 10 years ago.

In the months following September 11, 2001; I was working at a hospice in Virginia answering emergency calls every night.  Those long hours are often the hardest for caregivers; their loved one is asleep and they cannot rest -- concerns, fears, anxieties and often pain-- prevent sleep from coming.  Many calls I received were from these individuals who had any variety of questions or concerns and often needed a compassionate listener who would offer guidance and support without judgment.

One such caller was Joseph.  He began to call weekly asking for advice in caring for his loved one who was rapidly progressing through the later stages of Alzheimer’s disease.  After a few calls, he shared more of his personal experiences as a caregiver.  Joseph was caring for his mother-in-law but he felt she was more like a mother to him as he had known her since he was a small child.  One night, he tearfully shared that his wife had been a passenger on the plane that crashed into the Pentagon on that fateful day and his sister-in-law had been one of those killed the same day while working in the Pentagon.  I had no words except to say “I am sorry” as I was in tears too.  Each day, his mother-in-law greeted him with the same question, “Where are the girls?”   His grief could never take the next step in the healing process after such a devastating loss.  Joseph’s impending loss of his mother-in-law would also be very difficult to bear as she was the last link to the bond he had shared since childhood.   

Caregiving in and of itself is incredibly stressful.  Unfortunately, there are many additional causes of stress and grief that enter our lives without regard for the rigors of caregiving.  We need to offer each other support every day just as we did those suffering grave losses nearly a decade ago.