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Caregiver to Caregiver: We Are Not Alone

October 13, 2016

There’s nothing like sitting in a room with people you don’t know, looking into their eyes, listening to their stories and concerns, receiving words of wisdom, and learning that you truly are not alone, to crack the dam of pent-up emotions caused by dealing with a stressful situation and a future of the unknown.

It doesn’t matter that I’ve been in this ‘business’ of patient empowerment, advocacy, education, support, and community for many years now. It doesn’t matter that I’ve written numerous articles on various aspects of dealing with a chronic disease. And, it really doesn’t matter that I’ve identified resources available for ‘other’ people dealing with patient and caregiver issues.

On Saturday, I attended an all-day conference with a family member who deals with multiple chronic conditions. At this particular event, I had very little in common with the patients in attendance. I didn’t have the primary disease being discussed and I didn’t know ‘everything’ there was to know about the disease and its treatments. I was simply a typical caregiver or family member who was attending their first conference.

The way this conference was organized was great. There were opening and closing sessions for the entire group that presented information about the disease, treatment, and research. During the day, there were breakout sessions designed such that you had to choose what to attend. It was during some of these breakouts that the organizers created sessions for ‘caregivers only.’ Literally no patients (with the featured disease) allowed.

We had twelve people during the last breakout of the day. The majority of the people in the room were parents of people with the disease from 9 to 46 years old. There were a few siblings, at least one spouse, and only one child of a person dealing with the disease. That child was me.

The session started with the facilitator asking us about our relationship to the patient and what we hoped to learn during our hour. I answered the question and added that I wanted to pick up ideas about caregiving to share with my own patient communities. It wasn’t long before any thoughts of being there as a detached advocate fell away. I was left with the raw emotions of a person who doesn’t have all the answers.

Imagine that: not having all the answers, not being able to make suggestions to others, not even being able to stop the hot tears from streaming down my face as I listened to other people share their experiences and concerns.

After the session was over, several people came up to me to simply give me a hug. To reinforce what had been said – that I was not alone, that others understood, that it was going to be okay.

While I believe that several organizations, including pharmaceutical companies, have jumped on the ‘caregiver’ bandwagon and are reaching out to the ‘loved ones’ community to attract members or customers, there really is a need to help people connect.

On a personal level, I had never considered seeking out a support system for caregivers, nor had I signed up to receive information about my loved one’s diseases from the appropriate advocacy organizations. Each of these things would be a good place to start.

In searching for additional information about ‘caregiver’ programs or materials offered by the National MS Society, I see that information is gear towards people who attend to the activities of daily living (bathing, dressing, eating, managing personal finances and schedules, etc). The material available is not necessarily aimed at supporting the needs of friends, family members, or coworkers who are looking for information and support.

In thinking of my experience on Saturday, I don’t know if I’ll be able to attend in-person support groups in the area because of my own crazy schedule. I don’t know if I’ll be able to dial into a phone group either. But at least it is comforting to know that I am not alone and that there are others out there who deal with similar challenges, no matter if they are parents, siblings, or children of someone facing serious health challenges.

https://multiplesclerosis.net/caregiver/caregiver-to-caregiver-we-are-not-alone/