Are Your Caregiving Worries Harming Your Relationships?

If you're the caregiver for a seriously ill spouse and you're at your wit’s end, you're not alone. While a few marriages strengthen under such adversity, even many great ones will disintegrate without good direction. That's because being a caregiver is one of the most challenging and stressful roles a spouse is ever asked to undertake.

Although no two situations are alike, certain fears, worries, and concerns are universal for caregiver spouses. These tend to center on intimacy, hygiene, money, decision making, disrespectful treatment, family, communication, and strong emotions. These concerns are not to be taken lightly.

Meet Fran and Frank

Fran, a real estate agent in her 50s, married Frank 20 years ago. It was a second marriage for her. They raised her three children together. Frank, a banker, is now dying of emphysema—yet insists on his right to smoke. Fran juggles her very-unpredictable work schedule and her usual household duties along with caring for Frank and all the roles and duties that used to be his.

Acrimony fills the house as they argue over her concerns, including how his smoking makes him worse, the dangers of smoking with oxygen in the house, and that his secondhand smoke is harming Fran. She’s getting sick and tired of all of this, and just plain tired and sick from all the work and stress. Quite honestly, and understandably, she hates being home.

Problems Can Seem Overwhelming

Although Fran has a long list of problems, her most serious one is not knowing how to solve them. This causes her the greatest distress. Here is her "short list" of problems:

• Money: Like other caregivers, she’s worried about finances. No money can come in if she isn’t out selling properties.

• Legal issues: Legal issues with Frank’s disability coverage require working with lawyers while they worry that his coverage will end.

• Lack of skills: Fran often states that she’s a realtor, not a nurse, and is afraid she doesn’t have the skills or physical strength to handle the kind of caregiving Frank will need as he deteriorates.

• Communication: Communicating with Frank was always a challenge. Now that he’s dying, it’s worse. Frank is depressed and withdrawn, not wanting to talk about much, and certainly not important end-of-life issues.

• His mental state: Frank never shares what is going on in his head. That scares Fran because she’s afraid he might commit suicide—and that the children might find him if he does.

• Getting help: She isn’t sure how to get or accept help—or how to get Frank to agree to it. Like many husbands, he wants his dignity preserved and doesn’t want a stranger taking care of his personal hygiene. Yet it’s all right if Fran has to do unpleasant things like change dressings and tubes, and clean up his bodily discharges. Her dignity doesn’t matter to him. He thinks that as his wife, it’s her job.

Fran's thoughts and strong emotions concern and frighten her. She feels guilt, hatred, disgust, fear, loneliness, self-doubt, and so much more. She thinks her negative feelings toward Frank are terrible and that she must be an awful person to have them. She doesn’t know what to do about them and wonders if she’s losing it.

Caregiving Essential Reads

What Is an End-of-Life Doula?

5 Tips to Help Family Caregivers Navigate Healthcare Communication

She doesn’t have the energy, the knowledge or the skills to take over many of Frank's duties in the house, in addition to caring for him. She wonders how she can still have a life—and whether caring for him will be the ultimate end of hers!

There Are Solutions

Your life and your marriage are not over! Rather than just suffering with, and from, your concerns, you can use effective communication and resolution strategies. There are many ways Fran can make her life better. My book is filled with rebuilding strategies for caregiving spouses. But the most essential one for reclaiming the relationship with your spouse is communication. By learning a few communication techniques, you will be able to resolve many concerns.

Start by sorting your concerns. Write down, for your eyes only, all of your concerns. Next, separate them 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 spouse.

Learn some communication tools. First, learn how to present each D issue in a way that will encourage dialog. Don’t ask “why” your spouse does something, when you really mean “stop doing it!” Don't try to change your spouse's opinion; instead, work on changing his behavior (or yours). Practice reflective listening, where you repeat back to him what he just said, instead of interpreting. Use “I” statements, which help you avoid blaming or criticizing. And speak “his” language (if he’s very logical ask what he “thinks” about your idea, not how he “feels” about it).

Make a talking date to find resolutions. Set up a “talking date” with your spouse. Don't try to tackle all the problems at once. Choose one or two per session, and remember to use all the tools above. While you may need to agree to disagree on some topics, but you’ll still have other options and choices. Most couples I have worked with, even ones whose marriage is severely strained, are able to create mutually agreed upon understandings about important issues such as hygiene, visitors, intimacy, money, driving, and other universal concerns. You can too.

With mutual respect and compassion, you will have effective discussions and create agreements that will make life easier—and make your life and your marriage work. These understandings will let you remove the wedge between the two of you, and return to a more loving life together. Instead of home being a place you dread, it may now be a place of peace and warmth. Check my blogs regularly to learn more ways to make this happen and refer to The Caregiving Wife's Handbook for more detailed explanations of these concepts.