NMO Caregiver Support Group Meeting recap by guest blogger and NMO Advocate Lisa McDaniel.
The NMO Caregiver Support Group was amazing. The group was very open and it was a new experience for everyone who attended. For the most part, it was about sharing and meeting other caregivers and finding a common ground. Many of the caregivers had the same basic story, which seemed to bond them together.
This was the first in-person support group for all of those who attended the meeting.
We discussed topics like how to cope with a loved one’s illness. I started the conversation, but the group jumped right in with sharing stories, advice and supporting those who were having a difficult time. Taking time for themselves so they can better care for their loved one – this was a huge issue, as most of the group realized they do not take the time needed to care for themselves. Most of the energy for the group is focused on care giving, but in the end, everyone seemed to realize the importance of self-care and discussed ways to take the time each day.
We also discussed how to encourage a loved one when they are discouraged. As caregivers, it is difficult to encourage a loved one who is blind, paralyzed, bedridden, using walkers, etc. Patients are easily depressed throughout flares and often times feel like a burden. Many of the caregivers expressed frustration over trying to help a loved one when the loved one is frustrated as well. We talked about things to say, things to do as well as when it is time to give the loved one some space for a while.
Other topics included learning to give care through the various stages (newly diagnosed, flare-ups, recovery time, hospitalizations, everyday life, etc) and the importance of educating themselves about NMO so they could better understand and encourage their loved one.
Attendee Breakdown
- 28 total attendees
- 21 new attendees at NMO Patient Day
- 9 parents
- 16 spouses
- 3 patients
Outcomes
The biggest outcome seemed to be the relief on most of the faces at the end of the 2-hour and 15-minute meeting. I heard many say how they didn’t feel so alone anymore and how so many of the stories were similar. Many new connections were made. I also heard the new ones talk about how they were more comfortable going into patient day after attending the meeting.
I was able to put a few caregivers in contact with a support group in their area. I gave my business cards out to everyone and made sure they all knew to contact me if they needed anything. I also told them I could put them in contact with local advocates.
I think the caregiver support group was a great meeting. I was impressed with the willingness of the group to interact with one another. Many were nervous at first (understandable), but seemed to relax later on. Of course, many tears were shed throughout, as it was emotional to discuss many of the issues which came up. In the end, I saw many exchanging contact information and making plans to introduce their loved ones to one another.
Thank you to The Guthy-Jackson Charitable Foundation for allowing me to lead the discussion and the group. It was something I could totally relate to and I was able to draw on my experience as a caregiver and hopefully help some of the amazing people who attended.