To avoid ‘caregiver dementia,’ it’s important to find joy amid the devastation and frustration
Elisa cared for her husband who lived with dementia. When she couldn’t care for him at home any longer, she arranged for him to live in the only Alzheimer’s care facility in our community. My father eventually moved there too, and she and I became good friends after meeting at a caregiver support group session.
We’d visit each other’s loved ones. This reduced the feeling of needing to be there all the time, and still ensured our family members were provided with stimulating diversions.
Despite being in her 80s, Elisa maintained a full volunteer schedule, traveling hundreds of miles each week. She’d tell me that her children had a hard time keeping up with her. She was an energetic powerhouse who referred to her husband as her “short man.” She affectionately called him chapparo. I was eager to learn more Spanish words, but for some reason, could not remember this one. Instead, the word chalupa came to mind.
When I’d visit, sometimes, I’d say in Spanglish, “Hola, Jose. I am your wife’s friend, Brenda. She tells me you’re her chalupa.” He was bedridden with advanced dementia and reacted slightly. Yet, Elisa remarked on several occasions that he seemed to be more responsive to my visits than hers. So, why was it, when I called him chalupa, he didn’t respond? I would learn why during my next visit.
Elisa was at her husband’s bedside when I popped into the room and greeted them in my mixed Spanish and English. Again, he didn’t respond but she cracked up laughing. She then leaned in to tell Jose something. He turned toward me.
“What? Elisa, what did I say?” I asked.
“You’re calling my husband a boat,” she said semi-seriously.
We both had a hearty laugh. After that incident, I’ve managed to remember the difference.
Caregivers Say: ‘We Have to Laugh, Otherwise We’ll Cry’
Regardless of how uplifting and joyous we try to be, caregiving invites suffering at times. If we learn anything from the comedians who make us laugh, it’s to find the humor in life’s struggles. The following story illustrates how one’s past may create short-temperedness and anger, until something unexpected happens, causing laughter. It’s an example of how we can find the joy in caregiving.
The Flu and Wanting to Strangle My Father Before Laughter Saved the Day
After my father was diagnosed with dementia, his meticulous grooming and sometimes twice daily showers during his working years morphed into no showers and no change of clothes for months at a time. My mother passed away three years earlier, and lacking local support from my siblings, my husband and I agreed to move my father from Wisconsin into our California home.
By this time, his dementia had progressed to a diagnosis of probable. I had to keep an eye on my father to ensure he washed his hands before handling food after he came home from adult day care, used the bathroom or tinkered in the garage. Call me a germaphobe, but I can easily catch a cold or the flu. My husband didn’t fully appreciate my greater need for cleanliness, since he has a strong immune system, built as a boy who got into all sorts of messes. I was the lone soldier in this battle to make sure my father washed his hands.
I couldn’t watch him every minute. There were times when he’d reach for the middle slice in a new loaf of bread or dip his spoon into a jar of honey, lick it and then scoop out a spoonful of peanut butter.
Soon, he became ill. I raced him to urgent care when his fever topped 104 degrees. Then I became ill. Weakened and battling the chills, I felt anger toward him for causing this preventable situation.
Fortunately, the weekend brought a change of pace. With the emotional embers still smoldering, my husband, father and I sat in the family room reading the mail and newspaper. Suddenly, my father rose and stomped toward his bedroom. He stopped abruptly, turned around to look at us and sternly demanded, “Where’s my room?”
My husband said, “I’ll show you, Mardig,” as he rose to lead him down the hallway. I got up and followed closely behind. Still upset about the unnecessary illness we endured, I whispered, “David, look!” My father’s hearing was poor, so he kept walking as David turned to see me miming hands around my father’s neck, as if to strangle him. Since I typically don’t react this way, David began laughing. My father stopped, looked at David and then at me. Trying to cover up my guilt, I smiled like a Cheshire cat. David continued laughing. My father looked serious yet confused. Trying to figure out what was happening, he mirrored our reactions. A smile appeared and then he, too, began to laugh. Amazed at just how close to bottom we hit just a few days earlier, I started laughing, too.
What a breakthrough. Standing in the hallway, each of us laughing for different reasons, we must have wondered: “What are we doing, standing here laughing?” And this is what we mean when tears are dried with laughter. Thus, we returned to the family room with unburdened hearts filled with joy … for the time being.
5 Tips for Finding the Joy in Caregiving
- Learn about and use available resources in your community. My father attended adult day care services during the weekdays. I went to a weekly support group and learned as much as I could from local and online resources.
- Take a caregiver respite. Sometimes, just a five minute respite will help you regain perspective in a tense situation, and help you find a more workable approach to caregiving.
- Know that the person with dementia is trying hard to manage day to day. Alzheimer’s robs the brain of the cells needed to make sense of the world.
- Learn as much as you can about the disease or illness to know what to expect.
- Care for your loved one the way you would want to be cared for if you were living with the same disease or illness.
If you don’t do these things, you run the risk of getting caregiver dementia.