Caring for the caregiver

Advice for those who help an ill spouse or parent

Consumer Reports on Health: November 2012

Caring for an ill or incapacitated family member can exact a toll on your mental and physical health, no matter how devoted you are to the task. But research shows caregivers feel more confident and satisfied when they get emotional and physical support and get the information and training they need.

To get some advice, we talked with Diana Denholm, Ph.D., a licensed mental-health counselor in West Palm Beach, Fla., and the author of “The Caregiving Wife’s Handbook” (Hunter House, 2012). Denholm has been a therapist for more than 30 years and was her husband’s primary caregiver for more than 11 years.

What’s the most important advice you offer to caregivers?

Most important, by far, is effective communication. The process caregivers face is not adversarial; it must be collaborative. So even though it’s important to speak your mind, it’s all about the way you say things. For instance, if you’re discussing long-term care, it’s always better to start by saying, “I’d like to talk” rather than “We need to talk.” Be clear and effective. For example, say, “We really need to talk about your care. I’d like if we could speak about it right after breakfast or lunch.” While there might be issues that really bother you, it’s important to communicate them in a productive way, and look for methods to solve them together. It’s not about blaming, insulting, or humiliating.

How does caring for a spouse differ from caring for a parent?

With a parent, there’s a natural progression, an expectation that they will die before you, so it’s not as shocking when a parent needs care. Sometimes there are problems with regression—where a son or daughter might lapse into a childhood mentality—but generally, children and parents accept the relationship and understand their roles. Your spouse is the person you’re in love with, the person you had hopes and dreams and plans with. You have a unique and intimate connection with this person, and everything changes dramatically as roles shift when a spouse needs care. These roles are not always as easy to accept and adjust to.

What are some pitfalls to watch for?

Another thing I would say is to avoid trying to do things for your ill spouse that he can do for himself. Putting away laundry is a good example of this. You might prefer to be in control, but if your husband can put his clothes away in the drawers, it’s best that he do it himself, even if they’re not perfectly folded, or if the task causes frustration and takes a lot of time. Enabling the person who needs care is often harmful for both the well-being of the caregiver and the patient. Caregivers who take on too many roles often experience increased levels of stress and anger and even resentment toward the situation and possibly the patient. In the case of the patient, enabling him or her could lead to a greater sense of physical and emotional invalidation, which can turn the patient into an invalid. The less you enable the other person, the more time there is to care for yourself, which is also very important.

When should a caregiver get some outside help?

The caregiver needs to determine what lengths he or she will go to in regard to the spouse’s care, and it’s always important to make sure that any safety issues are dealt with. You might enlist a nurse to help make the house accident proof, to offer advice about how to properly lift the patient, or to show you how to use a chair to help a fallen person to get up—things like that. Coping with financial and legal matters would also be a reason to contact outside help. It’s important to realize that the caregiver doesn’t need to do it all alone.

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