Caregiving: Are you Following the Yellow Brick Road? 

Lester cares for his wife Jan on a full-time basis. Jan has brain cancer. Over the years Lester and Jan have shared many happy memories, both as a couple and a family with three adult children. In fact, it was only a few years earlier that Jan took care of Lester while he underwent radiation for his prostate. Lester reminds himself how Jan stood by him night and day with her loving reassurances that he would recover and enjoy life to the fullest.

Jan’s now unpredictable and declining state is taking a toll on Lester. The kids have asked if he wants outside help. He has dismissed the idea, wondering how he could abandon Jan when she has been there for him. Lester doesn’t notice the time of day or how sluggish his body feels. The cognitive impact of Jan’s illness has left little room for warm conversations or advice on how to do laundry. Jan no longer initiates hugs or eye contact. The overall lack of connection is taking a toll on Lester’s heart.

The tornado called cancer sweeps Lester and Jan high into the air. Everything changes so fast. Lester has discovered caregiving is riddled with unexpected and overwhelming twists and turns. He wonders: Is there a structured path for caregivers to follow? Is this my new normal? Answers may lie in following the Yellow Brick Road (from the movie The Wizard of Oz).

What is a caregiver? A care receiver?

The National Council for Aging Care states caregiving “is a general term referring to anyone who provides care for a person who needs extra help. This could mean a family caregiver, a respite caregiver, a home caregiver, or a primary caregiver [or someone else].”

Caregivers often start with doing little things like picking up prescriptions or taking someone to the doctor. These responsibilities increase over time and become an active part of the daily routine. Some caregivers suddenly find themselves caring for someone due to a major health event, accident or fire. The urgent need to help and “do whatever it takes” can mean that priorities get shuffled around until the crisis subsides and a care plan is in place. In either instance, caregiving becomes the new hat to wear for an indefinite period of time.

Care receivers are people dependent upon another person to assist with ongoing needs of daily living. The needs of care receivers vary from the non-medical such as meal preparations to the medical like administering medication. The importance of the emotional and spiritual needs of a care receiver cannot be overstated. The struggle to get better and to resume an ordinary life is an uphill battle for care receiver. Caregivers need to infuse kindness, patience, compassion and humor on a regular basis to ease the difficulty inherent in these situations.

How does the Yellow Brick Road Benefit Caregivers and Care Receivers?

On the Yellow Brick Road Lester meets other caregivers who encourage him to use a simple phrase: “There’s no place like H.O.M.E.” What could they possibly mean? Lester asks himself. A caregiver chirps up and translates:

H = Having fun

O = Opening up

M = Making memories

E = Expressing emotions

Lester recognizes he’s no longer in Kansas. He walks this new road with new friends. Each teaches Lester the roles they play in the life of their care receiver.

Dorothy offers hope and possibilities. For her Beloved, HOPE restores calm to an overactive mind and frees the spirit to trust the world again. Hope also means the strength to carry on and to minimize sliding down the slippery slope of despair and suffering.

Lion tells us how FEAR limits us and shuts down our ability to see with eyes wide open. In the caregiving world we need COURAGE every day to steer us away from doubt, to keep us dreaming and being honest.

Scarecrow says it takes the practical and the CREATIVE sides of us to care for others. When we use creativity to boost joy, when we remember to clear the mind of negativity we make more room for the most important files in our mental cabinet. To the receiver of care, CREATIVITY replaces stale approaches with expanded opportunities and possibilities.

Tin Man shows us how LOVE motivates us to see beyond pain, confusion and appointments. To the receiver of care, LOVE reminds them we are more than a dependent. We are someone with feelings and interests. LOVE allows beauty and light to shine.

The Wizard recognizes the importance of planning. He isn’t looking for big sweeping changes, but for little shifts connecting him to something bigger than routines. The receiver of care wants to know the illness isn’t dictating every move. They need to be part of a plan allowing for independence, growth and control – whatever that might look like in the moment.

The Witch believes POWER provides the energy to walk one more day in crazy town, to advocate for our Beloved, and to take a break from caregiving. POWER gives caregivers fuel to do the heavy lifting in order to lighten the load of care receivers. For receivers of care, POWER can mean the ability to say something hard or the strength to get up in the morning and face their illness again.

How do communication and caregiving work together?

Lester has gathered so many good ideas to share with Jan and the kids! As they keep walking the Yellow Brick Road, the group teaches him the value of clear communication. Verbal communication “includes the sharing of information by the use of speech and using appropriate tone of voice to match the message”. For Lester and Jan, words were becoming increasingly difficult.  Jan can’t complete her thoughts like she used, to so it can be confusing to figure out what she really wants. Instead of getting frustrated. Lester tries non-verbal communication techniques like hand gestures, eye contact and gentle touch. Over time he and Jan develop their own language. They’ve adapted to present circumstance and can refocus to create joy and make memories.

Lester’s friends lead him the towards the path of making good choices. The signs along the Yellow Brick Road read:

  1. Choose your guilt. Caregivers know how easy it is to get caught up in the guilt of not doing, giving or being enough. Care receivers experience tremendous guilt feeling they are a burden to others. With all of this guilt in the air, how does joy have room to show up? Face it: guilt is part of the caregiving journey. Instead of letting the big types of guilt wear us down, can we change gears and take on just a little guilt?  For example, Lester had a meeting and wasn’t available to take Jan to the doctor. One of their kids offers to drive her to the clinic. Lester realizes he has a choice: to feel guilty or to be grateful to his daughter. His daughter says she is glad to have the chance to spend quality time with mom.
  2. Choose your stress. Caregiving is a stressful job especially when it’s piled on top of all the other responsibilities. Constant stress takes a big toll on the body, mind and spirit. After a while, we start to believe everything is a big crisis and it takes a lot of effort to climb down from that mountain. We can choose to let either stress or our personal values drive our situation. If we value love then it has to show up more than stress. Holding emotions or avoiding them never does the body good. Opening up and expressing our emotions takes the edge off stress and contributes to a healthy outlook.
  3. Choose to carry or care.At one point, Lester believed he could carry Jan’s cancer story. By choosing guilt, judgment, blame and pity, Lester thought this was the right way to love Jan. In time, however, he notices a lack of energy and his anger weighs him down. He recognizes he is more miserable than helpful. With this realization Lester reaches out to his friends who explain the benefit of caring for Jan instead of carrying her story. Love now comes first. He can forgive the cancer and act with compassion. Lester now feels energized, rested and willing to explore the journey from a place of expanded curiosity.

Can a gold coin be our Joy?

Before Lester says goodbye to his new road friends, they give him a shiny gold coin called Joy. One side of the coin says “Boost” and the other side says “Bust”. Joy boosters are internal cues to keep us in the present moment, thriving and free. Joy busters occur when something on the outside makes us feel stuck, throws us into survival mode and limits our possibilities.

Lester pulls out the Joy coin and tosses it. When he sees the “Boost” side he smiles and walks to the Joy Bowl and picks a suggestion. Today he has to play a song and dance around the house. Jan and Lester have scheduled fun time – a joke or funny video – every day at 9:00 in the morning.  Once a week they host a “happy hour” for friends and family to stop by for laughs.

When Lester flips the coin to the bust side he and Jan remember how quickly they can get swept away with the fear of the unknown and feeling hopeless. They turn to their favorite quote, poem or prayer as a way of getting back to the Yellow Brick Road and returning to H.O.M.E.

Written by:
Rita Abdallah, LISW-S, LCSW-C, ACSW
Speaker, Intuitive, Wellness Coach
Turning Point Services, Ltd.
ritaabdallah.com  

Samantha Skelton
ss@triagecancer.org