The Caregiver's Handbook

Caring for a loved one—and yourself

Caregiving: A Disease?

A 6-step remedy

Long-term and terminal illnesses shatter lives and relationships. Unfortunately, the act of caregiving intensifies the destruction. For the caregiver, relations with the ill person are certainly shattered when death occurs. But damage occurs long before that time from the stresses and strains of dealing with illness on top of the impending loss. The result is that loved ones are often turned into adversaries. 

As a caregiver you may feel almost as if caregiving is a disease in itself. Given the physical and emotional toll, and premature death of caregivers, thinking of caregiving as a disease isn’t a very big stretch—at least metaphorically. Fortunately, by following simple strategies you can discover options, choices and remedies.

Caregivers have common concerns. Ela and Paul find it hard to handle the many unexpected changes that come their way now that Paul is suffering from Parkinson’s. Watching her husband decline is difficult enough, but on top of it, she has to deal with more challenges than ever before. These challenges are showing up in her physically, as well as in her changing personality. Hygiene and appearance concern Ela, as they do many caregivers. Paul has lost a lot of weight, and his Parkinson’s caused his posture to deteriorate. Ela is concerned that others might think she’s failing in her “wifely duties” because he looks unkempt. So, she criticizes him, in front of others, saying he looks like he’s slouching in his suits. This is deeply embarrassing for everyone present.

Find a Therapist

Search for a mental health professional near you.

Unfortunately, caregivers avoid discussing difficult issues with their ill loved ones because they feel guilty, they're afraid it will upset them or they think it won't make any difference. Ela, like many caregivers, simply didn’t know how to do it. And that’s where the problems began. Instead of having a compassionate discussion, Ela was cruel to the man she adored.

Using learned communication methods remedies many problems. Ela decided she had to make significant changes. Using my book, she learned Six Steps to better communicate with Paul - steps she could use for any difficult discussion with friends and family.

Step 1. Declare your concerns—to yourself.

Ela began by writing down, for her eyes only and without censoring herself, every concern or complaint she had. A typical list may include topics ranging from minor annoyances (You leave your medication bottles all over the house. I can't take your complaining.), to fears (How will I pay the bills after you're gone? You'll fall down if you don't use the walker.), and everything in between (I'm sad we can't make love anymore. I wish I could get a break. I'm mad that you're still sneaking cigarettes. Your family takes me for granted).

Step 2. Determine what’s important to discuss.

Next, Ela organized her concerns to help her decide what to talk about with Paul. Four categories were all she needed: 1.Things she wanted to say but didn't expect a response to; 2.Things she wanted to say but wouldn’t because it wouldn’t make a difference; 3.Things she wanted to say but should only share with a friend; and 4.Things she really needed to talk about, know about, have resolved, or make a decision about. The last group is what she would discuss with her husband.

No topic is off limits, but the way you express yourself will determine the proper category. For instance, saying, “You really stink and I can’t stand being around you”, isn’t off limits, but is something only to share with a friend or confidant, not your loved one. However, saying “I’m concerned about your hygiene” is appropriate to share with your loved one.

Step 3. Use simple tools to frame a successful discussion.

Here are a few simple tips and techniques Ela learned: not asking "why" (you really don’t want to know why your husband leaves the toilet seat up, you just want him to change his behavior and put it down.); letting him keep his opinion, while changing his behavior (It’s all right if he hates his medicine, as long as he takes it.); reflective listening, where you repeat back to him what he just said, instead of interpreting (If you interpret what he says, it will stop a conversation dead in its tracks); using "I" statements (It’s more effective if you don’t presume something about another person by using the inclusive “we”); speaking his language, which means structuring your statements in the way he will most easily understand them (If he's very reason- and logic-oriented, for example, you might ask him what he "thinks" about something, rather than how he feels.).

Step 4. Make a "talking date" and use what works for you.

Using her new tips and tools, Ela arranged a talking date with Paul. Rather than saying “We need to talk”, Ela began, “Paul, I have some concerns about your appearance. I know I’m not handling that very well, so I’d like to talk about it. Would this evening be good, or would tomorrow morning at breakfast be better?” She used an “I” statement because, it wasn’t Paul’s desire to talk. Then she gave two closed-end options, knowing that just asking Paul when they could talk might be answered, “Never!"

Ela remembered that she and Paul always had their best conversations at the kitchen table, so she chose that as the setting for this important talk.

Step 5. Prepare yourself.

Take time to calm and relax yourself before you begin. This will start you on the right path for you and your loved one to work collaboratively to resolve issues and problems.

Step 6. Collaborate with your loved one and create agreements.

Having employed mutual respect and compassion in their discussion, Ela and Paul came up with several agreements about expectations for themselves and others. For family visits they decided; “From now on, our families will only visit on Sundays, and only if we invite them."

Occasionally, partners hit an impasse and have the option to agree to disagree in order to reestablish peace in the home. This is much healthier than continuing to argue over something that won’t change.

Ela is now making her life and relationships work, and making her life easier in the process. Rather than being in an adversarial position with friends and family, she now has the ability to collaborate and reclaim loving bonds.

See more tips and tools at my other caregiver articles: Caregiving-Where Do You Begin?, Who Helps the Caregivers?, and Five Survival Tips.

Diana B. Denholm, Ph.D., L.M.H.C., is a medical psychotherapist and the author of The Caregiving Wife's Handbook.

more...

Subscribe to The Caregiver's Handbook

Current Issue

Just Say It

When and how should we open up to loved ones?