Caregiver Confidential: Say What?

During your loved one’s journey with ALS, did friends, coworkers, or medical professionals make well-meaning but insensitive comments? Even the most well-intentioned person can utter inappropriate “words of encouragement” and behave in a hurtful manner. Being around terminal illness can make people uncomfortable, and as a result, they unintentionally say the exact wrong thing. As a caregiver, it’s not uncommon to hear, “It’s God’s will,” “Things happen for a reason,” “I don’t know how you do it,” “I know how you feel,” and “Aren’t you relieved that it is all over?”, among others. Isn’t it preferable to be a good listener, do a helpful chore for the family, or give a hug, which are true expressions of kindness and compassion?

Like many of you, I heard some questionable comments during my husband Brian’s 5-year battle with ALS. Let me relate two instances:

  1. After a hospice visit one afternoon, our visiting nurse told me that it would be better if Brian passed away. I was taken back and did not know how to respond to this unsolicited remark. Was she offering her personal opinion, or was there a medical basis for her comment? (I believe it was the former.)
  2. We had some friends over at a time when Brian was losing his ability to talk and be understood. One person commented (in Brian’s presence) that he must have lost some of his mental faculties. Nothing could have been further from the truth, at least in Brian’s case. Sadly, this friend conflated slurred speech from ALS with dementia or diminished mental capacity.

Fortunately, for every awkward, misguided comment, there are wonderful supportive friends, colleagues, and family who stand with you and your loved one and want to help. Actions speak louder than words, and you quickly learn who is and isn’t there for you and your family.

While doing research on what not to say to a caregiver, I came across a 2009 blog post by Fern Cohen, a writer and ALS patient, who addressed this topic from the perspective of an ALS patient. In her post entitled, “What Do I Do? What Do I Say?” (http://alsny.blogspot.com/2009/05/what-do-i-do-what-do-i-say.html), Fern discussed how people’s own attitudes toward serious illness may shape their interactions with an ALS patient, and she shared her coping mechanisms in these situations. Fern’s post helped put some of my experiences with awkward verbal exchanges into perspective in ways that I had not contemplated previously. For example, maybe I misread a well-intentioned but misplaced comment because of the stress I was experiencing that particular day. I now think that the interpretation of these comments may be partly influenced by the stress level in the household and on the caregiver.

Have you or your loved one been surprised by comments from friends or family? How did you respond? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, in the comments section. Let’s continue the conversation.

Idelle thumbnail
Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

 

 

Visit www.alsa-stl.org for more information and resources for caregivers of people with ALS.

5 thoughts on “Caregiver Confidential: Say What?”

  1. We had a friend who, time after time when seeing my husband who suffered from ALS, would extend his hand to offer a handshake. Time after time, I would explain that Don could no longer shake hands. While it was frustrating and even embarrassing, Don was grateful that the man cared enough to make the effort. Look for the positive!

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  2. Jim’s speech was slurred early on but he had no observable physical changes. A workout friend of his asked me if he was on drugs. When he ate very slowly on a cruise and asked that I bring something to do while he finished another passenger reamed me out for being rude. Jim carried a card at the beginning explaining that he could not speak but he understood everything. Bulbar ALS is a different animal and I get that people were confused.

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    1. Thanks for sharing, Lisa. I never contemplated the differences between bulbar ALS and limb-onset ALS and that it would be very confusing to people because the physical disability would be less apparent early in the course of the disease in a bulbar patient. It sounds like Jim handled a difficult situation with grace and patience on your cruise.

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      1. He moved his arms and legs until the very end but could not breathe. Speech and swallowing went very early although he golfed, drove and worked out for much longer. I expect if he had chosen to get a trach everything would have gone but he chose his own path for which I will be always be eternally grateful. Even the people who knew about ALS did not realize the bulbar presentation was very different and much less common.

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  3. Don had a wonderful, positive attitude and was obviously a gracious person. You are so right about looking for the positive.

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