Adapting and finding balance in caregiver-patient relationships

“I have always depended on the kindness of strangers,” Blanche DuBois explains in the closing line of Tennessee Williams’ play “A Streetcar Named Desire.” DuBois is a Southern lady in the declining years of her life, attempting to adapt to a changing world. Because her abilities are no longer the same as in her younger days, she develops coping mechanisms.

I see a lot of myself in that character. When cold agglutinin disease (CAD) intrudes into my life, I’m forced to adapt to my changing world. Like DuBois, I’ve developed coping mechanisms. They don’t depend on the kindness of strangers, but rather on those who are close to me. My husband, Mike, is the primary helper, ensuring that the household runs smoothly and that basic needs, such as laundry and meals, are met.

Living with CAD, a rare autoimmune hemolytic anemia, means navigating a world where my immune system mistakenly attacks my red blood cells, especially in cold weather, which causes fatigue and difficulty breathing. With no known cure, this condition requires constant adjustments as it subtly reshapes my daily life. For months, I’ve been facing the consequences of momentary actions, often finding myself sidelined like a spectator in my own life, while others, including Mike, step up to fill the gap.

Recommended Reading

September 11, 2025 News by Andrea Lobo

Glucocorticoid therapy successfully treats man’s CAD: Case study

Depending on others

Caregivers must walk a fine line between real and perceived needs. Ideally, the caregiver and patient would have perfect communication, like telepathy, along with understanding. I laughed as I wrote that sentence. We’re all human and make mistakes. Primarily, caregivers must develop awareness.

First, caregivers need to be aware of the dynamics a patient is feeling. At present, I don’t feel sick only when I’m being perfectly still in my bed or on the couch. Yet I don’t look sick. My ever-suffering husband has been the recipient of the growls and grumbles caused by this situation. As my caregiver, he needs to be aware that I’m not upset with him but rather the situation.

Mike often comes up with suggestions to help with my shortness of breath or lack of energy. To do so, he must be aware of many aspects of CAD. He knows that increasing my iron intake doesn’t help and may in fact be detrimental. He knows that my shortness of breath isn’t due to a cold or congestion, but rather is caused by my lungs “requesting” more oxygen to reach my red blood cells.

Finally, Mike needs to be aware of all the situations that may exacerbate or alleviate my CAD symptoms. He knows that although CAD isn’t considered a terminal disease, another disease may develop from my weakened immune system. More than once, he has suggested that someone refrain from visiting me to protect me from possible infections. He is more than willing to play the “bad guy” in this situation. This requires him to step out of his personal comfort zone.

We’re both out of our comfort zones and change our expectations moment by moment. I’m writing this on a Monday afternoon. Before CAD, I would’ve gone shopping, had a pedicure, and organized late afternoon activities — all before noon. However, by the time I was ready to go out today, I was exhausted and needed rest. I had to cancel everything. Mike is monitoring the afternoon activities, and I’ve ordered pizza to be delivered for supper.

At times like these, when things aren’t working out as I had envisioned, I draw on philosophies formulated a long time ago. In my teens, I became enamored with the works of English pastor and poet John Donne. In his poem “No Man Is an Island,” Donne writes, “No man is an island,/ Entire of itself;/ Every man is a piece of the continent,/ A part of the main.” I’m learning that we are all interdependent on one another. And in this interdependency, both Donne and DuBois were right.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.