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.
What are some typical fears, worries, and other concerns that arise for caregiving wives?
Women worry about finances and legal issues. They’re afraid they don’t have the skills or physical strength to handle caregiving. They have such terrible thoughts and emotions and don’t know what to do about them. Communicating with their husbands is a challenge. Wives aren’t sure how to get or accept help, nor how to get their husbands to agree to it. Husbands may not share what’s going on in their heads, and that scares wives. The roles he used to take on need to be filled, but they are new to many wives. They wonder how can they still have a life if they’re taking care of him, and whether caring for him will be the end of themselves.
Can wives — and should wives — discuss all of these issues with a husband who may be in the process of dying?
Wives avoid discussing difficult issues with their husbands because they feel guilty, or they’re afraid it will upset them, or they think it won’t make any difference anyway, or because they simply don’t know how to do it! But issues absolutely should be discussed during this dying process, because you can’t do it after he’s gone. However, not every issue and concern is appropriate, and wives need to have a way to decide which things to discuss, know how to raise these issues, and then how to have productive discussions with positive outcomes.
What practical strategies do you offer in The Caregiving Wife’s Handbook to help wives and husbands solve problems and improve the quality of their married life?
- Bring it all out into the open — with yourself.
For your eyes only, write down everything you’ve been wanting to ask him or say to him. Don’t censor yourself. Your statements will range from major annoyances, to fears, and everything in between.
- Choose your discussion topics — file the rest.
Now, sort all of your questions and comments into four categories: A — things I want to say but don’t expect a response to; B — things I want to say but won’t, because it won’t make a difference; C — things I want to say but should only share with a friend; D — things I really need to talk about, know about, have resolved, or make a decision about. Category D will be the topics you will discuss with your husband. Learn how to start conversations for each D statement using the tools in step 3.
- Familiarize yourself with basic communication tools.
Learn not to ask “why” questions; how to agree to disagree; how to let him keep his opinion, while changing his behavior; how to use reflective listening and “I” statements; and how to speak “his” language.
- Make a “talking date” with your husband.
This is actually one of the trickiest steps, because if you say, “We need to talk,” it puts him on the defensive. Plus, he may not want to talk on the spot. Here’s what to do instead. Start with a statement such as, “Honey, I need to talk about some things with you concerning your health and your care. Would Tuesday or Thursday evening work better for you?” Giving a forced choice is more effective than leaving this open-ended.
- Prepare for the “big talk.”
Take some time for yourself, look at your topic list, and briefly run the discussion through your mind, thinking about ways to encourage mutual respect. Then put away your list and notes and get yourself as calm as possible.
- Have your talk, and create “Understandings.”
Understandings are devices that make life easier and make it work because they supply a framework for your agreements, making them easier to remember and to act upon.
What message do you hope caregiving wives take away from your book?
Caregiving can destroy people and marriages. Part of that destruction comes from not giving ourselves permission to have our true feelings. It’s okay to be angry, or disappointed, or repelled when we know what to do about those feelings. Even at the end of a husband’s life, and in the midst of great suffering and sorrow, there’s a path we can follow to deepen our relationship, find mutual compassion, and arrive at a place of profound understanding and love. While we cannot avoid the fact that our husband is going to die, rather than having a negative experience resulting in irreparable damage and regret, a wife and her husband may acquire tools to get through their challenges, and can create a far different outcome. The possibility is that both we and our husbands can make it through these challenges, including the death itself, emotionally whole and with compassion for ourselves and for each other.