Love in the Time of Caregiving

Qualitative health researchers such as me are often silent witnesses to the human side of illness. Unlike our clinician colleagues, we don't diagnose, treat, or offer any tangible ways of managing illnesses. Instead, we ask questions and follow our study participants down the paths of their changed lives, and most of all we listen. Sometimes if we are lucky, we learn and receive more than just answers to our research questions. Sifting through the weight of words and memories, we weave together pieces of the illness experience where the beginning, middle, and end are never distinct or linear.

Sometimes we start at the end, as I did when I interviewed Ben for our research study on understanding caregiving in Parkinson's disease. Ben had been a carepartner to his wife, Paula, who had died over a year ago from advanced Parkinson's disease and dementia.

That is how it came to be that our conversation started at the end.

“Tell me about Paula,” I say.

“She was a beautiful lady,” he replies, and then pauses for a couple seconds, “I just still miss her…I know it's been 17 months, but it seems like yesterday.”

Seventeen months. Not almost a year ago. Not a year and half ago. But 17 months.

I nod and respond with a soft, “Hmmn.”

Seventeen months where each passing day was counted. Love lingers in the quiet of each day.

“You are nothing in this world without a good woman,” Ben tells me. His “good woman” was Muslim. He is Christian.

“She had her faith. I had my faith. But it didn't stop us from being good partners.”

When she died, he gave her a Muslim funeral. He then turns back the clock and tells me of the time they met. Time becomes a random jumble of meaningless numbers.

“We were together like 30 years, 33 years, I mean. We were together for about 8 years. Then we got married. We were married for 32 years, I mean, 24 years or whatever.”

That period of “whatever”—32 or 24 it did not matter—it was theirs, their time together. His eyes glisten with unshed tears and he says, “It was awesome, you know.” Then for the next hour, I listen to fragments of those 32 or 24 years. A little bit about the beginning, but we mostly stay at the end when Paula lay in a bedroom “upstairs,” unable to move but constantly in need of something. The time when she was in “no condition to do anything.” Still there was always the comfort of knowing that he could go into her bedroom, could see her, say “good night,” and tell her that he loved her. But love can be hard. It can be hurtful.

“Sometimes it was rough. I mean, it was brutal. And, you know, I-I used to get so frustrated. I used to tell her… I'll be so glad when you're gone.”

My heart lurches at the raw truth of those words. Ben shakes his head with regret. He adds that he had apologized, and she had responded, “I know, it's hard on you.” They navigated the rough days the best they could. He promised her that he would fight if she wanted to fight but when she was ready to give up, he would let her go.

“What was rough?” I ask naively, “Was it the physical part of caregiving? Or was it the emotional part?”

“It was both,” he replies, “I mean, emotionally it was rough because here's somebody you love, and-and you're sitting there just watching 'em dwindle away to nothing…and there's nothing you can do about it.”

Physically taking care of her was hard. It wasn't just because she fell a lot. It was because Paula did not want to be a “burden” and would attempt to walk independently when she couldn't. Not wanting to be a “burden” she offered to help him with chores. But “she was really in the way” and her “help” meant more work for him.

“If I had a chance to do it all over again,” Ben says wistfully, “I would let her try to help the best way she could.”

Then there was the dementia and memory loss. That made it physically and emotionally harder. Each day, he would repeat the same information to her, and each day she would promise him that she was going to try to remember. Then she would forget. But even then, Paula was cognizant that she did not want to be a burden on him. She never wanted to “disturb” him and would ask him, “Why are you so good to me?” There were two reasons in his mind. First because he had taken a vow to care for her in “sickness and health.” Second, because he loved her.

“I felt very lucky to have her in my life. I wish I could have had her longer. But it wasn't God's will,” he says. During their years together, they had had their ups and downs.

He adds, “She loved me with all my faults, and I loved her with all her faults.”

Love seemed to be an acceptance of what is. There was nothing Ben could do about the illness. Nothing could fix it or make things better for Paula, but he did everything he could despite the hardships and the futility. There was no one to help and some days it was just one difficulty after another.

I ask Ben, “During the whole process when you were caring for her, did it seem like a burden?”

“I never thought of it as a burden,” he replies. Then, after a brief pause, he adds, “I just did the best I could. I wasn't looking for any rewards, or blessings, or anything.”

And Ben continued to do his best. In her last days Paula was unable to talk, move, see, eat, or drink. While she lay in her bed awaiting death, he cleaned her, placed little drops of water on her tongue, and turned her over to prevent bed sores. Ben never thought he could “change someone's crappy diapers,” but he did.

“I guess the Lord has a sense of humor,” he says, “He made me eat my words…Because that's what I did…you don't even think about it…you're doing it because they would do it for you…and because you love the person.”

In the midst of deep grief, love is tender, protective. It has been 10 months since that day when we talked, and I have thought about our conversation often. Underlying the grief, the fears, the anger, the frustration is the caring, the love.

“I think the moment of joy for me was when she was gone because I knew she was not suffering anymore,” Ben whispers, “God was merciful.”

She was gone. It was an act of mercy. Love is keeping the promise to let go. Before I met Ben, I had read, written, and placed caregiving within the box of hardships and burden. But, perhaps beyond the hardships, caregiving is always about love. A love expressed through vigilant eyes that watch for falls but a mind that cautions against rushing to hold upright a frail body. A love that is seen in the hand that cleans a soiled body to preserve the dignity of the other. A love that flows with the tears when the words, “I'll be glad when you are gone,” tumble out of an unguarded mouth.

The day before Paula died, Ben sat by her bedside and held her hand. She could not talk or move. He put his head on her chest and wept. He asked her to forgive him for anything he may have done to hurt her. He asked her to blink once if she forgave him and twice if she couldn't.

She blinked once.

Ethical Compliance Statement

This personal reflection is based on an interview conducted as part of a study approved by the University of Rochester Research Subjects Review Board (RSRB Study 00007402) and met Federal and University criteria for exemption. The author confirms that as per the approved study protocol, written consent from carepartner participants was not required for this study and hence was not obtained.

Funding Information

This research was funded in part from an award from the University of Rochester 2022 Research Equity Fund Program.