Diana Denholm can relate to the challenges of being a caregiver. A month after her husband proposed, he was diagnosed with colon cancer.
While he survived the cancer, he was later diagnosed with congestive heart failure. Even after receiving a heart transplant, her husband continued to deteriorate and develop other conditions, including severe osteoarthritis, skin cancer, kidney failure, depression and Parkinson’s disease. Denholm was her husband’s primary caregiver for over a decade.
Even though Denholm, Ph.D, LMHC, is a medical psychotherapist, she felt incredibly unprepared for her role and found little direction for navigating the many stresses and challenges of being a caregiver.
This inspired her to write the book The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself, which gives women the practical tools to traverse their day-to-day lives and communicate with their husbands.
Denholm writes honestly about the realities and roller-coaster ups and downs of caregiving. She says what most caregivers know: It can be an ugly experience. Caregivers often do everything from dressing wounds to changing catheter bags; they experience resentment and may lash out at their sick spouse; and they can turn to unhealthy coping behaviors such as alcohol and substance abuse.
Denholm wants caregivers to know that while your marriage and life will change, they’re not over, even though it may seem like it. The best ways to circumvent the pressure of caregiving are to prepare yourself and continuously communicate with your spouse. Below you’ll learn more about effective communication and other key considerations of caregiving.
Denholm emphasized the importance of communicating with your spouse as early in the illness as possible. There will be many topics you might want to cover, everything from finances to intimacy. She created a step-by-step process of effectively communicating with your spouse.
- Write down a list of your concerns. In the book, Denholm gives readers prompts to facilitate the process, such as: “I am angry about the following things;” “I’m angry with myself about;” “I don’t want to do these things for my husband;” “I want him to;” “What do I say to people about.”
- Sort the topics into categories, including the words you want to say but won’t get a response to; the words you want to say but feel won’t make a difference; the words you want to say but should share with a friend instead; and the words you really need to discuss, know and make decisions about. Of course, it’s this last category that you’ll discuss with your spouse.
- Before talking to your spouse, learn basic communication tools, such as using “I” statements; letting your spouse have his or her opinion but working to change his or her behavior; and using your spouse’s language. For instance, if your husband is more of a thinker than a feeler, ask him what he thinks rather than what he feels.
- Plan a time to talk with your spouse by saying something like “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?”
- Prepare for your talk by reviewing your list and the discussion in your head. The key is to be as respectful as possible. In her book, Denholm cites a quote from Indian saint Shirdi Sai Baba: “Before you speak, ask yourself, is it kind, is it necessary, is it true, does it improve the silence?”
- Create “understandings” and put them in writing. According to Denholm, understandings are simply “devices that make life easier and make it work.” This could be anything from both spouses agreeing that family will only visit on Sundays to the caregiver not nagging his or her spouse about a specific topic to carving out one night a week for romance. On some topics, couples will just need to agree to disagree. Either you’ll never talk about it or you can bring it up after X amount of time has passed. Caregivers also can create understandings with themselves.
Emotions are another big stressor for caregivers, Denholm said. Caregivers often feel angry for a number of reasons. Their lives have changed, they’re stressed and they can’t fix their spouses. They may be angry that their spouse is responsible for the illness, whether directly or indirectly, and still won’t do what they need to for their health and well-being.
In the book, Denholm includes a helpful exercise for processing and releasing anger called “The Boulder Activity.” Sit in a comfortable position, and take a few slow, deep breaths. Pretend you’re in the woods in a beautiful setting, and come across a large boulder. It represents something that either annoys or angers you, such as something you or someone has said or done, or an event or situation. (According to Denholm, it’s never a person, including yourself, because you never want to send negative energy to anyone.)
Next to the boulder is a sledgehammer, which you pick up. Use the sledgehammer to hit the boulder. (“You’re not going to try to break up the boulder or even break pieces off it, because you can’t change what has happened. However, you can unstuff your emotions.”) As you strike the boulder, be specific about why you’re upset. Name the issue in detail in your mind, so you can remove your anger.
Self-care is the most difficult thing for caregivers, Denholm said. Caregivers know what they need to do but rarely feel like they have the time or energy. But the biggest hurdle is permission to practice self-care, she said. Caregivers worry that enjoying themselves is a betrayal of their sick spouses. Denholm summed up the issue in the following question: “What kind of a terrible wife am I that I’m at a yoga class while my husband is in bed suffering?”
If guilt is an obstacle to self-care, harness these feelings. Denholm suggested thinking of self-care as a way to sustain your well-being for your spouse. If you’re exhausted and emotionally drained, you can’t take care of anyone.
If time is an issue, avoid taking on all the responsibilities and micromanaging, she said. In fact, doing everything for your spouse is a bad idea in the first place. Not only do you become exhausted, frustrated and resentful, but you turn your spouse into an invalid, she said.
While it might not feel like it, remember that as a caregiver, you do have choices, Denholm said. You have choices about the roles you take on and the ones you don’t.
Learn more about Diana Denholm and her work at her website.