What They Need Isn't What I Need


What They Need Isn't What I Need

I've been writing about attending last week's Science of Caregiving meeting. (See Dressing the Part, Family Caregiver, M.D. and Rather than Research the Problem, Fund the Solution.)

During the two-day event, I asked several questions of the researchers. At one point, I asked if they know of any research around interventions to help traumatized family caregivers. (I also suggested a good place to find traumatized family caregivers is the emergency room. A traumatic event at home, like a caree's fall or a stroke or a heart attack, impacts the family caregiver.) I also asked if they've researched effective interventions to help both family caregivers and carees on Diagnosis Day in order to connect them to support and help.

For the most part, the researchers answered my question by talking about the patient. On the outside, I smiled and said "Thank you." On the inside, I screamed: I'm asking about the family caregiver! We are here to talk about family caregivers!

And, that speaks to the problem: We have traumatized family caregivers sitting in the emergency room because health care professionals still focus on the caree and overlook the family caregiver even when the family caregiver is pointed out to them.

Last night, a colleague connected me to a Facebook conversation; my colleague is looking for help for a friend who cares for her mom. The family caregiver is struggling to balance her priorities, she wrote. I happily offered my help. I'm now connected with the additional comments around this conversation. This morning, a life coach offered her services because she understand the aging process. Even when the family caregiver clearly states her need (balancing priorities), a professional turns it into the caree's aging process.

This particular incorrect assumption (the aging process one) makes me crazy. Often, people will lump my work into the "older adult market." Some family caregivers are older adults. But not all family caregivers are older adults. A solution for older adults may not be a solution for family caregivers. Anyone of any age can be a family caregiver. Family caregivers are thrown into an experience which changes their life (i.e., their priorities).

In other words: AAAHHHHHHH!! Focus on us!!

Last spring, I had a conversation with an organization interested in creating support groups for family caregivers. They asked about having carees join the support group. I understand that thought process, which makes it easier for the family caregiver to attend the group when they bring their carees. But, family caregivers will not feel comfortable discussing their stress and worries in front of their carees. The organization staff got it after I explained that to them. While we share an experience, we need different support.

My parents' struggle differs from my struggle. We're sharing an experience but we are not sharing the same impact. I work. They don't. I'm trying to save for my future. They've saved for their future. I'm trying to juggle my schedule to make their doctor's appointments. They have lots of flexibility when scheduling appointments. I'm trying to keep a life while helping them. They've had a long, wonderful life. I saw what happened to them. They saw me, smiling and comforting.

When I started working with family caregivers in 1990, I spent a lot of time educating others about the caregiving experience. It's incredibly frustrating that 27 years later people still don't get it. My parents need help. I need help, too. But, it's a different kind of help. We share an experience which affects each of us differently. What the caree needs is often not what the family caregiver needs. Please, know the difference.

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That is why your work is so vital. I know it doesn't help you in this moment but I feel a tipping point is right around the corner and you my sister are leading the charge.


Hi Becca! I just want to make sure I'm answering the question you are asking. :) It sounds like the doctor has made recommendations to your mom that your mom is not following. The doctor is asking you for an update about his recommendation. How do you respond? I think it's important for us to state the truth: Your mom's choice, right now, is not to follow the recommendation. You understand how important it is so would love suggestions to make it happen. \r\n\r\nDoes this help? If I misunderstood the question, please let me know!\r\n\r\nThanks so much for being with us! I always enjoy reading your comments_mysql.


Denise, thank you for sharing about your long term frustrations in trying to draw attention to the caregiver. You are right on the money. Go to the ER, caree is out to lunch, they ask the caree questions and glance towards the caregiver from time to time. I have learned to insert myself squarely into the conversation. I am a bully in that area. :)