ELIZABETH SHULMAN, DMin, STNA
Dementia Caregiver Consultant
Illustration by Nicole Xu
"When we are no longer able to change a situation, we are challenged to change ourselves." These words by Holocaust survivor Viktor Frankl can offer brilliant guidance to those caring for someone with Alzheimer's or another dementia-related illness. There
are more than 16 million dementia caregivers in the U.S. Not surprisingly, a sense of burden and depression are two of the most researched areas in the field of caregiving.1 Whether it's limited support, a response to their loved one's
behavior or just a general sense of loss, it is not unusual for caregivers to wish things were different in some way. However, when a stressful situation offers no immediate solution, caregivers may discover a sense of hope and well-being not by changing
their actual circumstances, but by changing how they look at their situation.
LOOKING FOR GOOD IN CHALLENGING CIRCUMSTANCES
There is a story about a farmer who was working his field when a traveler heading into town came upon him. The traveler called to the farmer, "Excuse me, good man. May I ask what kind of people I will find in this town up ahead?"
"What were the people like in the town you came from?" asked the farmer.
"Oh, I thought they were wonderful! I found them to be so helpful and full of cheer. I was sorry to leave them," replied the traveler.
"Have no worries," said the farmer. "You will find the same type of folks in the town ahead."
Feeling hopeful, the traveler went on his way. A short while later, a second traveler happened by and asked the same question to the farmer: "You there, what kind of people are in this town I am approaching?"
"What kind of people were in the town you left?" asked the farmer.
"Scoundrels! I didn't trust any of them. I'm glad to be rid of them!" answered the traveler.
"I'm afraid to say," replied the farmer, "you will find more of the same in the next town." Disgusted, the traveler continued on his way.2
How we currently experience life can be a good indicator of our outlook toward the future. In simple terms: Do you consider yourself a "glass half-full" or a "glass half-empty" type of person? Research has shown that simply approaching a problem with
the assumption that there will be a positive outcome greatly increases the chance of that result happening.3 Fortunately, if you tend to worry and forecast bad outcomes but are willing to approach challenges in a different way, you may
be rewarded with a newfound sense of optimism and hope.
POSITIVE PSYCHOLOGY AND REFRAMING
In the 1990s, American psychologist Martin Seligman's research became the foundation of what is known today as "Positive Psychology." Positive psychology studies the positive influences of life, including what brings about authentic happiness
and meaning to it. The idea of reframing is one aspect of positive psychology. Reframing is perhaps one of the most powerful tools in a caregiver's toolbox because it is free, unlimited and completely self-driven.
Reframing is a learned behavior. When problems arise, it is very easy to focus on the negatives associated with those difficulties. In fact, it is so easy that it is usually the default. However, because we are created in God's image, we are also imbued
with God's infinite love and all the limitless solutions that it provides. This requires a willingness to look beyond and above a problem, even when we are knee-deep in its challenges. Reframing takes practice, but because of some of the many symptoms
of dementia (for example, forgetfulness, repetitive questions and confusion), caregivers have numerous opportunities to practice.
FOCUS ON A GOAL FOR RELIEF FROM NEGATIVE OUTLOOK
Reframing replaces problem-oriented thinking with goal-oriented thinking. Let's be honest, some problems cannot be solved: Alzheimer's currently has no cure, there are only so many hours in a day, and other family members may not ever step up
to help out. This is where focusing on a goal, rather than on the problem, can offer some relief. For example, say you were cooking on the stove and a fire started in the pan you were using. Would you stare at the fire and wonder to yourself, "How
did this happen?," "What is to be done about this fire?" and perhaps the least helpful, "Why is this fire happening to me?" No, you would turn away from the fire to search for something to help put it out. In doing so, you did not ignore the problem;
you simply took your attention off the worries and fears related to it so that you could focus on the solution.
Therefore, reframing is not denying that a problem exists. Rather, it is using the problem (in this article's case, caregiving for someone with dementia) as a means to find a sense of meaning or purpose that is bigger than the problem itself. Caregiving
can consume the caregiver because so much attention is on the person needing the support. In my previous work as a chaplain in hospices in Tennessee and Ohio, I saw firsthand how "caregiving can kill the caregiver." And while taking time for ourselves
is extremely important, reframing can be done while actively providing care, thus allowing for real-time feedback and the opportunity to tweak our efforts and try again — or even commending ourselves when we've made strides forward in changing
our perspectives.
As an example, one of the most common frustrations I hear from caregivers that can provide an opportunity for practice is dealing with repetitive questioning. A woman once shared with me that she wanted to pull her hair out when her husband asked for
the 10th time in one morning, "What time is lunch?" After this went on for many weeks, she did some reflecting and chose to reframe how she heard the question. She decided that every time her husband asked her this question, she would pretend that
it was the first time he had asked it and would pleasantly answer, "Noon." She chose to meet her husband where he was in his mind, rather than force him into her reality. Immediately, she went from an irritated wife to one who was simply providing
an answer to her husband's innocent question (albeit, over and over).
It is important to remember that providing care to someone with Alzheimer's or another form of dementia is not about being logical or setting our loved one straight: it is about providing assurance. When we can reframe our daily scenarios in this light
and let go of the need to convince our loved one of something that they are no longer able to understand, it recalibrates caregiving to a different quality from which both the person with dementia and their caregiver can benefit.
DESPERATE TIMES CALL FOR THOUGHTFUL MEASURES
What about situations that turn into something we can no longer control? For example, your loved one's care has become so extensive that you can no longer care for them at home. Finding care in a facility is perhaps one of the most difficult
decisions a dementia caregiver will make. It is also a situation where you may be tempted to place your focus on negative scenarios (for example, thinking "My spouse will be so angry," "I'm a failure for not being able to care for him/her myself,"
or "What if the care is substandard?"). However, whether you are seeking facility placement or facing any issue that feels beyond your control, there are several ways to help mitigate the stress through reframing:
- Focus on the goal, not the problem (for example, saying to yourself, "I want to find a safe environment for my wife," instead of, "My wife will never forgive me").
- Rather than believing that you are alone, seek out others who have been there. Facebook and Reddit are two places that have many dementia caregiver support groups where users can get advice. Additionally, a couple of good reading resources that may
help on your path to reframing include Loving What Is: Four Questions That Can Change Your Life by Byron Katie and A Year of Positive Thinking: Daily Inspiration, Wisdom, and Courage by Cyndie Spiegel. Whatever your caregiving
dilemma, chances are there are others who have been in your situation who can help you navigate through it.
- Try not to become too consumed with how a solution to a problem will come about. Instead, envision the result you are hoping for, and use your God-given imagination to visualize how it will feel when the solution arrives. This creates space for the
Holy Spirit to do its work and allows for the "hows" to present themselves in ways you could have never expected. Note: this is not a passive act, but instead it is practicing Jesus' words: "Whatever you ask for in prayer with faith, you shall
receive." (Matthew 21:22)
- Watch your "self-talk." Change statements like, "I can't do this," to "I can do all things through Christ," or even simply, "I wonder how this is going to end up working out for me?"
- When a solution does present itself and you feel inspired to take action, do it.
A PERSONAL STORY
For me, reframing meant completely changing my attitude; although, I wasn't purposely meaning to, nor did I understand it as "reframing" at the time. In 2002, after 12 years of marriage, my husband was diagnosed with paranoid schizophrenia. Eventually,
after overseeing his care for six years with four children under the age of 10, I was beyond depressed and consumed with negativity. His noncompliance with his medication and subsequent behavior was erratic and bordering on dangerous. One afternoon,
while sitting alone in the car, crying, I threw my hands up and said, "You know what, God? Bring it!" At that rock-bottom moment, I went from having a "woe is me, life is never getting better" outlook to becoming a bit of a warrior. I didn't realize
it at the time, but I reframed my experience from a problem in which I was spiritually drowning, to a challenge where I was ready to fight. I no longer allowed my husband and his distorted sense of reality to make horrible decisions that negatively
affected our family. He was distrustful and angry with me as I acquired this new persona, but truth be told, his illness caused him to be this way, regardless. With my new attitude, I finally sought help and put myself first, discovering that I truly
was a better mother and able to make better choices for our family after I changed my approach by seeing myself in a new way.
CHOOSING A NEW VISION MAY REQUIRE ACTION
Caring for a loved one with dementia can bring about many challenges that may feel beyond our control. Negative feelings can be our internal guidance system that indicates when we need help, but we may need to take the first step in reaching
out. In fact, many clergy members during my graduate research expressed a desire to help caregivers, but were at a loss with how to do that. You can help others help you when you are able to share your specific needs (for example, saying, "I need
someone to wash my wife's hair two times a week," "I need someone to sit with my husband for an hour while I run to the store," or "I need Holy Communion brought to our house"). Sometimes we may not even know what we need, we just know things are
getting to be too much. Your state's Area Agency on Aging offices can offer direction and support, as well as local Alzheimer's Association chapters or other dementia support groups. Hospice services are also a vastly underutilized resource, especially
when it comes to Alzheimer's disease. Hospice social workers and chaplains are able to provide months or even years of support to caregivers.
Dementia caregiving can be fraught with unexpected dilemmas. Fortunately, our outlook on caregiving is one thing that is completely within our grasp. In fact, no one else gets to determine how we choose to view our life and all of its ups and downs. Perhaps
one of God's greatest gifts is hope. If our situation causes us distress, we can choose hope, put on a different pair of glasses and try to look at our situation in a new way. It may not be easy, but it is simple. It takes practice, but hasn't life
always been about learning and growing? So many things in this world would have us bend toward the negative — news in the media often being one example. Thankfully we are not created in the world's image, but instead in God's. Romans 12:2 says,
"Do not conform yourself to this age, but be transformed by the renewal of your mind, that you may discern what is the will of God, what is good and pleasing and perfect." When caregivers are able to transform their experience of caregiving through
the renewing of their mind, they, too, will discover God's good, pleasing and perfect will.
God, help me to see my challenges through your eyes, knowing that your vision is perfect and that the life I am living is always in your sight. Amen.
ELIZABETH SHULMAN has more than 30 years of ministerial experience and has served as a United Methodist pastor, university researcher and health care chaplain. She currently trains churches on how to become a resource in their community
for dementia caregivers and is the author of Finding Sanctuary in the Midst of Alzheimer's: A Spiritual Guide for Families Facing Dementia.
NOTES
- Sheung-Tak Cheng, "Dementia Caregiver Burden: A Research Update and Critical Analysis," Current Psychiatry Reports 19, no. 9 (September 2017): 64, https://doi.org/10.1007/s11920-017-0818-2.
- "The Two Travelers and the Farmer," Spellbinders, https://spellbinders.org/the-two-travelers-and-the-farmer/.
- Courtney E. Ackerman, "Self-Fulfilling Prophecy in Psychology: 10 Examples and Definition," PositivePsychology.com, April 17, 2020, https://positivepsychology.com/self-fulfilling-prophecy.