All of a sudden, when you reach a “certain age,” your friends start sharing horror stories about caring for their elderly parents or a spouse who has just received a grave diagnosis. With advances in medicine, people are living longer with serious illnesses. For the patient’s loved one, that could mean many years of caregiving, which presents a number of personal and relationship challenges.
I spoke with an expert on this subject, Dr. Diana Denholm, who has written a new book devoted to the subject of caregiving. She has a 30-year private practice as a medical psychotherapist, specializing in helping caregivers and their loved ones navigate through the daily struggles of long-term illness and its damaging effects on family relationships.
Dr. Denholm, you have a compelling personal story that inspired you to write The Caregiving Wife’s Handbook. What’s your own background as a caregiving wife?
I was the primary caregiver for my husband for 11½ years. He was 16 years my senior. A month after proposing, he was diagnosed with colon cancer, with only a 20 percent survival prospect. Following surgery and chemo for a year, he not only survived but was pronounced “cured” after five years. After the cancer, though, he developed congestive heart failure. He declined dramatically for four years more until he was fortunate enough to receive a heart transplant. Following the transplant, a variety of body systems began to fail, resulting in his needing dialysis, having severe osteoarthritis, frequent bouts of gout, chronic urinary tract infections, a poorly functioning colon, diverticulosis and diverticular bleeds, hernias, chronic eyelid infections, skin cancers, fluctuating blood pressure, depression, a sleep disorder, free-floating blood clots, a choking disorder, and Parkinson’s disease.
Even with my training and professional experience, like others in this caregiving situation, I found no direction. Part of what inspired me to write my book was the lack of direction and information available for me and my friends who were going through the same issues.
How does the caregiver-patient dynamic affect a marriage?
One of the most painful changes for wives is gradually moving from the role of wife to the role of parent. Not only do our roles change, but so do those of our husband as he has to shed various responsibilities. Some marriages strengthen, while others disintegrate. Some women are in abusive relationships and find the abuse continues, and even increases, during these times. Others find, much to their surprise, that they become emotionally and/or physically abusive to their husbands. Some find they start or increase alcohol and substance abuse (including food) in order to get through the years. Some have affairs for emotional sustenance. Essentially, the marriage as we know it ends.
In your experience, how does it affect the caregiver?
We often feel isolated in our circumstance. Our life has been put on hold, and we can’t even imagine the future. Where once there were ideas and plans and mental pictures, it’s now all blank. There are so many things we’d rather be doing now, but we can’t do them because we’re the caregiver. We’re filled with many negative emotions, and feel guilty about them, even though they are normal. The day-to-day matters of our role in his care, our previous roles, our self-care, our ongoing lives, household management, sleep, sex/intimacy, changes in and strains on our marriage, current and future finances, and other issues are all right in our face. Practical issues continue that require action on our part. It’s mentally, physically, and emotionally exhausting, and the only end in sight isn’t a good one.