2019 caregiver summit

More than 300 caregivers gathered Nov. 1 for support and education during the WellMed Charitable Foundation’s 2018 San Antonio Caregiver Summit, Navigating the Journey.

The summit, held at the Whitley Theological Center in San Antonio, Texas, featured John Leland, New York Times reporter and author of Happiness is a choice you make: Lessons from a year among the oldest old and Dr. Sharon Lewis, recognized caregiver expert and creator of the Stress-Busting Program.

With more than 43,000 informal caregivers in the United States, the annual Caregiver Summit plays a vital role in helping caregivers, providing support and information to help them cope with their important work.

This year’s summit is the third for Mayra Mendoza. The youngest of eight children, Mendoza started caring for her parents after her mother developed dementia.

At first, Mendoza cared for her parents part time while working full time, but has now quit her job and moved in with them to provide more intensive care.

“I thought I might regret moving in with them, but now I’d do it all over again,” Mendoza said. “It’s the hardest job of my life, and the best one, too.”

Feeling more confident about her role in her parents’ lives, Mendoza feels she can help younger caregivers like herself.

“At 32, I’m not like a lot of the caregivers here,” she said, indicating the mostly older people in attendance. “Many of these caregivers are retired and have a pension; I don’t have that and I know what it’s like. I’d like to reach out to the younger caregivers.”

The summit also featured lunch and complementary flu shots provided by WellMed. Attendees also had the opportunity to experience a Virtual Dementia Tour, a tool used by UT Health San Antonio to educate nursing students. Other resources included a panel discussion with local caregivers, and information from agencies such as the Alamo Area Council Of Governments, VITAS Healthcare, Area Agency on Aging and the Alzheimer’s Association.

Congratulations to the WellMed Charitable Foundation for another successful caregiver summit!

By Carol Zernial
WellMed Charitable Foundation Executive Director

We all want to be happy. We pop our heads up now and then to measure how happy we are. We buy things that will “make” us happy. We devote quite a bit of time and emotional energy searching for this seemingly allusive state. Don’t we have an inalienable right to life, liberty and the pursuit of happiness? So when we don’t feel happy, something must be wrong with us or our lives, right?

As a reporter for The New York Times, John Leland decided to write about the experiences of the oldest old, which must certainly be a sad tale about the downward spiral of old age, illness and death. This can often be our perspective as well. But the stories became his book, Happiness Is A Choice You Make: Lessons From a Year Among the Oldest Old. In them, John talks about how he went looking for depression and loss, and found people focused on happiness instead. Could this be us, too?

John recently spoke to a large group of caregivers at our annual Caregiver Summit. He wears a shirt with the names of the people he interviewed who are all age 85 and over. Each person made an impression on him with their resilience and positive outlook despite old age, illness, and yes, even death.

Ping Wong had worked physically demanding jobs her entire life – standing on her feet for years. As an older woman who was now physically worn out without much income, she qualified for some home care services – an aide to cook some meals and clean. She was astounded at her good fortune that she was now the care recipient!

The stories John collected each feature someone who can’t help but be happy despite their circumstances. When he realizes that they are happy, not because they are lucky or everything is going their way, but because they choose to be happy, he decides he would like to be more like them. I think this was my biggest take away – how he had internalized the notion that happiness is something we all really can choose. And why not? This type of reframing is exactly what we teach in our Stress-Busting program for caregivers. We can’t change other people or our circumstances, but we can change how we react.

We all want to be happy. What if we counted our blessings every day: The love we feel toward people in our lives, the change of the seasons, soft sheets on the bed, the companionship of a cat or dog. Rather than spending time wondering how to be happy, what if we choose to let go of the worry for things that we can’t really control anyway? What if we made it a goal to find a memory that makes us smile at least once a day? We might even write it down, so it’s easy to find again.

Choosing to be happy isn’t really a new idea. But if it’s us doing the choosing, and it’s our lives that are changing – because we want to feel better and let go of the anxiety and anger, then it’s new to us. I could see the John was serious about reacting differently and living his life differently. What if we choose happiness too?

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 Jamie Huysman, PsyD, LCSW

The holidays are upon us once again. Every year we make plans, have expectations of ourselves and others, and many times struggle with “what to get” for everyone. We juggle and try to make sense of lack of time, money, and overwhelming feelings of obligation. Caregivers give of themselves every day in service of giving someone a better quality of life. At all times it is a gift of presence for a reason, a season, a lifetime, even during a busy holiday season.

Caregiving is celebrated as a national month of recognition in November to raise awareness. However the greatest awareness needs to come from caregivers by way of committing to acts of kindness toward themselves.

Caregiving will never be a one-size-fits-all experience. It never takes a holiday. Intensely personal, at its best it is a tapestry of trust, understanding, and connection. Hence, each caregiver-care receiver relationship is a unique dance of interweaving your life for the benefit of another. That’s the “doing” of it. Beyond that, great value can be found in it’s being and becoming; caregiving can be the greatest of teachers.

Denial, anger, bargaining, depression, and acceptance have been identified as the “5 Stages of Grief.” Recently, a 6th stage has been added: anxiety. It doesn’t seem farfetched to me that these same stages can be experienced in caregiving, especially around the holidays. Occurring in no particular order, all of these are simply a part of our human “beingness” and come as they may, like it or not. Learn to let your feelings ebb and flow and be OK with whatever you are “being” at the time. Let your feelings be what they are; it is an act of self-love which you deserve.

The “becoming” of caregiving begs the following questions and I urge you to consider:

» What have you learned about yourself by being a caregiver?

» How has caregiving changed you?

Your answers to these may surprise you. Never take for granted what caregiving has given to you. There is a yin to every yang! “The greatest gift that you can give to others and to yourself is time. Embrace the gift of time whether you give it or receive it,” says psychologist Philip Zimbardo. In the words of Nike, “Just do it.”

As we embark on this holiday season, I would ask that you not forget or take yourself for granted. Spend some time with yourself and for yourself throughout the holidays. It’s been a crazy year in the world. Take whatever precious moments you can to love and celebrate you. After all, you are the gift. Tis the season; enjoy!

Peace and Love,

Dr. Jamie

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

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.