By Carol Zernial
WellMed Charitable Foundation Executive Director

Have you ever done something that seemed completely frivolous just for the fun of it? Have you done something frivolous since you became a caregiver? For most of us, caregiving is serious business. We’re dealing with serious illness or disabilities, medical appointments, long hours, and a load of emotions – doing something just for the fun of it doesn’t always come to the top of our list. That’s where Lincoln comes in.

Last week, I was speaking with a friend and colleague who had missed a conference call we had set up. He informed me that he had just enrolled his mother in hospice and some things were falling through the cracks. It turns out that his mother has been caring for his father who has Alzheimer’s for a number of years. In her eighties, she has literally worn herself out caregiving.

But the hospice story takes a magical turn.

It turns out that his mother had an IRA that no one knew about. Because of her age, she is required by law to take out a certain amount of money every year or pay a penalty. When asked what she wanted to do with the money taken out of the account this year, she said,” You’re father’s name is Lincoln. I think we should buy him a Lincoln car.”

My friend reminded his mother that Lincoln has Alzheimer’s disease and can’t drive. “Well,” she said, “then he should be driven in a Lincoln. Couldn’t his caregivers drive him around in his car?”
The more my friend thought about this frivolous idea, the more he liked it. The morning his mother had a long doctor’s appointment and was out for about 4 hours, he went down and rented a Lincoln and returned to pick her up in the new car. She was delighted!

He purchased insurance that allowed for his paid caregivers to drive Lincoln in the lap of luxury of his new car. Soon, Lincoln and his wife were going everywhere in style.

My friend’s mother is very frail. A few days ago, her hospice workers reported that they couldn’t get her out of bed. She wouldn’t take a shower. My friend called his mother and asked if she
wanted to go for a ride in the Lincoln. She immediate got up, showered, and was ready to go. The idea of splurging – of spending time, money or energy on something that really is just for
fun can make no sense at times. Renting a Lincoln for Lincoln makes no sense – and yet it makes all the sense in the world. He either always wanted one or his wife wanted him to have one.

I’d like to think that a guilty pleasure would actually relieve some of the guilt of being an imperfect caregiver. We might not be able to get a luxury car, but we could splurge on a triple decker scoop of our favorite ice cream. We might buy lunch from that favorite deli down the street that we used to go to all of the time. We might take a taxi or Lyft around the lake, around our old neighborhood, or just around town on a pretty day with the windows down.

I like the think of Lincoln and his wife sitting in their Lincoln smiling at whatever is going by. They may be on their way to a dreary medical appointment, but life is good on leather seats.

If you’d like to drive along with Lincoln too, see if his new website is up and running at LincolndrivingLincoln.tv. I know I’ll be looking out for him and smiling just for the fun of it.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and emeritus Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.

By Dr. Jamie Huysman, PsyD, LCSW

Being a primary caregiver can be a thankless job – particularly when you’re doing the best you can, and it’s still not enough. Family dynamics can be treacherous. Other family members may have very strong opinions about how they think things should be handled. Fortunate is the family that can work together for the greatest good without breaking the ties that bind.

“Be kind to unkind people; they need it the most.” – Robin Williams

It’s helpful to remember that everyone handles emotionally charged situations differently. Well intentioned, but thoughtless comments can wreak havoc on the psyche of a primary caregiver and/or their caree. While everyone should have a say, when you’re the one in the trenches coordinating all the moving parts daily, the last thing you need is dissension and undue pressure. That’s why having your own place to vent your feelings in a support group or to a trusted friend is so important.

It’s been said that 10% of conflict is due to a difference of opinion, and 90% is due to the wrong tone of voice. Sometimes it’s not what you say, but how you say it. Choosing words wisely, thinking before speaking, and speaking in a manner you would like to be spoken to are important communication skills; some say considering the source is an art.

There are some attitudes, feelings, states of mind, and personality traits that can impede being kind and genuine communication – these may belong to the caregiver, the caree or anyone else in the mix. They are human. I’ve identified the ones that seem to cause the most damage.

First and foremost is Fear. Fear prevents action and many times has its roots in unresolved anger. Self-judging thoughts of “What if I make a mistake” and “I can’t do this” keep us stuck. In the words of Eleanor Roosevelt, “You must do the thing you think you cannot do.”

Frustration is a manifestation of undirected negative energy; it will wear you out and can cause you to make errors in judgment and other mistakes. Practicing kindness toward yourself can mitigate the toll frustration can take on your health and happiness.

Guilt is a tyrant. It saps not only energy but also the confidence needed to be your best as a caregiver. Why are you guilty? Making amends for the past does not require guilt as an incentive. If you are present and doing your best, let the rest go; you are enough.

Impatience is frustration’s sibling. Its energy can fill a room and make everyone uncomfortable. There is time to do what you need to do without animus. You can always apologize for being in a hurry and just get on with it. Kindness is an unselfish act and only takes a minute.

The arch-rival of self-esteem is Perfection. The notion that things need to be just so is self-defeating, making nothing good enough, ever. It’s not a perfect world; get used to it.

Allowing for people, places and things to be perfectly imperfect will make the world a happier place.

Lastly, Resentment breeds contempt. Feelings of resentment are the #1 obstacle to effective caregiving. If you are resentful about being a caregiver, perhaps it is not a job you should undertake. It’s okay to know that about yourself. Not everyone is made for the sacrifices or level of responsibility.

In the end, kindness can prevail, in spite of the presence of fear, unresolved anger, frustration, impatience, perfection, and even resentment when practiced diligently.

My favorite mantra is, “BE KIND. For everyone you meet is fighting a battle you know nothing about.”

Dr. Jamie is a popular keynote speaker, media expert, and author. He co-authored the acclaimed “Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss.” Dr. Huysman writes for Caregiver SOS, Connections, JoanLunden.com, Huddol.com, and blogs on PsychologyToday.com.

By Carol Zernial
WellMed Charitable Foundation Executive Director

Caregivers sometimes have to make tough decisions – literally decisions of life and death. It doesn’t matter if we knew this moment was coming. It doesn’t lessen the intensity of the decision if the person is very old or in poor health. The question will be asked: What do you want to do now? But that’s not really the question, is it?

When we are making decisions about surgery, ventilators, feeding tubes, Do Not Resuscitate (DNR) orders, or even a decision to go for the full code – to try everything humanly possible – it’s not really a question of what we want to do. The real question is what does the person wants to do who is facing delicate surgery, life-prolonging interventions, or even death.

Hopefully, we have had the opportunity to have these discussions with the person for whom we are caring. Knowing clearly what the person would want if they can’t communicate for themselves is a lifesaver for us. Any discomfort we may have in starting the conversation about death with a loved one – of any age really – will become a great source of strength and comfort in a dark hour when we know what they would say.

It’s important to repeat this conversation as our loved one gets older, gets sicker, is in greater pain or, in the most likely outcome, is deteriorating. A person might make a different choice if the pain becomes too great or the effort to stay alive doesn’t equal the quality of life.

The question is not what we want. The question is do we know what our loved one would want at this time and in this situation. We have to step back from ourselves and be their voice – no matter how difficult and no matter how much we might want to disagree.

We might have to stand up for a decision we know our loved one would want against the loud voices of other family members. We might have to summon all of our strength to say, “Please just make them comfortable” knowing that comfortable means allowing our loved one to slip away.

The matriarch of our family, my 97-year-old great-aunt, recently passed away. In addition to her many other interests, she had formed a death and dying “club” where she and her older friends talked about what they wanted at the end of life. We all knew exactly what she wanted even when she could no longer say the words. When her time came, her friends and family came to her apartment in a steady stream for three days – holding her hand, brushing her forehead, whispering words of love and friendship. It was an amazing ritual.

We are not all going to be so “lucky” as my aunt, but she created this possibility. Embracing difficult conversations about life and death, and respecting these final wishes mean that we can all live life, up to the last moment, on our own terms.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and emeritus Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.

By Carol Zernial
WellMed Charitable Foundation Executive Director

How many family caregivers have sacrificed their financial futures through the act of caregiving? That was the question that ran through my mind as I listened to Elizabeth White, author of “Fifty-Five Unemployed and Faking Normal.” She eloquently described how a well-educated, middle income, professional woman fell into poverty. She was also middle-aged, meaning that she was unprepared to fight the sinking economy of the last recession and ageist forces that permeate American culture.

She wasn’t a caregiver, but she embodies the plight many family caregivers, particularly women, will face. When a woman quits her job to care for a loved one, she reduces her income over a lifetime by over $300,000 in lost wages and retirement earnings. She was already paid less than her male counterparts. She was already less likely be promoted, because she was a woman who might get married, might have children and might need to take time off to care for a family member.

The chilling truth is that most baby boomers, male and female, live either in debt, or paycheck to paycheck. Elizabeth quoted a statistic that most of us can’t raise more than $400 in an emergency. Of course, caregivers never find themselves in emergency situations.

Her most haunting comment was that Americans didn’t really want to hear about her slide into debt. People don’t have much sympathy for others who don’t manage their money. I wonder when two-thirds of an entire generation are financially failing in their old age if we will assume they did something wrong. Or, as she stated, will blame them for drinking too much Starbucks.

Elizabeth talked about the people she became aware of — while she was pretending to be okay — who were faking normal too. Caregivers do that all the time. We’ve got everything under control. We don’t need any help. As reticent as we are to admit we’re physically and emotionally exhausted and are hanging on by a thread, caregivers are probably even more
hesitant to admit they can’t make ends meet as well.

I thought of family members and friends who are just like Elizabeth. They’re single without retirement income other than Social Security and perhaps a little savings. Some have grown children. And many are caregivers.

What if we do everything right and still fail? We return the love of our family members with the care they need. We sacrifice our time and talents that were paid for with years of education or opportunities we turned down to be closer to home. Will others not care that we were the ones who did care?

Elizabeth talked about the importance of getting off of our thrones and admitting that we need help. This might be a true financial restructuring. But it could also be admitting to our siblings that we can’t go it alone. It could mean planning now for life post-caregiving to try to improve our odds in retirement. For me, it means seeing through the mask of faking normal in the faces of the people around me. And raising my hand to support those of us who really are caring.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at CaregiverSOS.org or toll-free at 1-866-390-6491.

By Dr. Jamie Huysman, PsyD, LCSW

A heartfelt CONGRATULATIONS to all cancer survivors! We are fortunate that we have access to so many unique stories of personal triumph. From the Norman Cousins classic, “Laughter is the Best Medicine” to Joan Lunden’s courageous “Had I Known,” each of these inspirational stories give hope and help to those who follow in their footsteps.

While the “official” survival celebration took place on June 3, every day marks a personal anniversary and victory over this too common perilous life journey. It’s hard to imagine that there is anyone in America that has more than a couple of degrees of separation from its effect on the one battling it or their friends and family.

Cancer is a very personal disease. I have spoken to many who have battled it and many whose job it was to care for the wounded. They all say the same thing; they all say, “It changes you.”

And so the walks, the 5K and 10K runs and relays, the dinners, and the pledge drives continue because we have to do something. We fight the good fight for all of those who lost their battles as well as those who have not yet seen combat.

The exact origin of cancer is not known, but there is evidence of cancer in the bones of a dinosaur found from 150 million years ago (American Cancer Society). Regrettably, it did not die out with them.

According to a 2014 article in Discover Magazine, an ancient Egyptian medical text, called the Edwin Smyth Papyrus that dates back to 1600 B.C., is widely believed to contain the earliest known reference to a cancerous tumor and a description of what is now accepted to be breast cancer.

There’s evidence of cancer in roughly 200 individuals in the human fossil record. In 2013 British researchers recently uncovered the oldest example of human cancer in a 3,200-year-old male skeleton found at an archeological site in northern Sudan.This is widely known as the oldest complete skeleton of a human displaying metastatic cancer.

Literally, billions of dollars are spent each year on cancer-fighting drugs with horrific side effects. The cost of new drugs approved to treat cancer is itself life-threatening for many Americans. Not to mention the myriad of drugs prescribed to combat the side effects. Is it any wonder that the word “cancer” can send shockwaves of palpable fear through a room?

Current environmental concerns and considerations aside, cancer has been part of our evolutionary journey throughout the Ages. It had its place in the primordial ooze and has now become a deciding factor in the human gene pool; it is part of our human DNA.

It is DNA research that holds the best hope for, if not finding a cure, at least abating the progression of the seemingly endless ‘kinds’ of cancer that have been identified and diagnosed. There is research pointing to the role of infectious diseases as precursors to cancer.

What is lost many times in the treatment of this 21st Century plague is the human element. While clinicians need to avoid the stress of having to deliver a dreaded diagnosis, patients need to know that they will have access to all available resources of support, the least of which is their own attitude toward being sick in the first place.

Celebrating cancer survivors forges hope; for without hope, all is for naught.

Dr. Jamie is a popular keynote speaker, media expert, and author. He co-authored the acclaimed “Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss.” Dr. Huysman writes for Caregiver SOS, Connections, JoanLunden.com, Huddol.com, and blogs on PsychologyToday.com.