Important conversations the two of you should have early — and often — include:
- How the ill spouse can support the caregiving spouse.
- What the ill spouse can do to take care of himself or herself.
- What can the well spouse do to make life easier?
- What are your feelings and thoughts about the illness and how it’s affecting your life, our marriage, and the future?
- Do we need more outside help and support?
- Are our coping styles in conflict? Is one of us a staunch optimist, the other a realist?
- Are we finding time to enjoy each other and life, despite the illness?
Listen — even when it’s a tough job. Dealing with medical limitations can leave you feeling depressed, angry, fearful, and guilty — whether you’re the “sick” or the “well” spouse. And sometimes a civilized talk won’t let you or your partner really vent. Allow yourselves to express your true feelings about the illness, without blaming or criticizing each other.
Don’t be the health police. The health cops are always on patrol, checking to see if the sick spouse is taking her meds, eating all of his high-fiber cereal, following through with medical treatments, and looking over test results. Trouble is, studies show that when the well spouse joins this police force, the ill spouse is more likely to resist following doctor’s orders. “Don’t nag, blame, shame, monitor, fuss at, or criticize,” Dr. Sotile says. “Research shows these are ineffective ways to help your spouse — they just don’t work.” What does work: support, encouragement, expressing concern, compassion. “It’s enough to tell your spouse that you hope they’ll develop a specific new health habit because you love and care about them,” he says. “Leave it at that. Pushing the issue could easily backfire and hurt your relationship at the same time.”
Throw negativity out; invite happiness and fun in. Often one spouse in a patient-caregiver relationship feels angry or isolated, anxious or depressed or pessimistic. “It’s tough for the other spouse not to fall into the same way of thinking,” Dr. Sotile says. “It’s vital that the other partner continue to express love, concern, and care while refusing to participate in this form of misery. Joining in can lead both of you into anger, conflict, and worry. If you both burn out on negativity, it’s not going to help either of you.”
The antidote? Declare periods of time when you don’t talk about the illness — it could be for an hour, a day, or a weekend. Do whatever you can still enjoy together. “If you used to go country dancing, and now one of you can’t dance, think about everything you enjoyed about that experience and try to re-create as much of it as you can,” Dr. Sotile says. “Don’t throw it all away. You enjoyed the music, seeing friends, dressing up, getting out of the house, laughing. There are other ways you can still have those parts of the experience.”
Likewise, spend time appreciating small pleasures together: the sun on spring leaves, a CD by your favorite musician, a new movie.
Don’t do it all — or sideline the sick spouse.“You both need to feel necessary,” Dr. Sotile says. “We all need to feel needed, including someone who has a health condition. Letting the patient be a source of strength and encouragement helps everyone.”