Special feature written by Sandy Karger, MS 

When a family member or significant other is diagnosed with FTD, many emotions, feelings, and fears creep into our world. It is common to initially feel totally overwhelmed when a loved one is diagnosed with FTD, to be to be filled with confusion, and to experience a deep sadness. We are required to try to adjust to this life, not knowing what the future will bring and when. We attempt to go on with life with worries and concerns that perhaps had not been previously part of our everyday existence. Old worries and concerns are magnified, and new ones arise.

Being a part of an FTD Support Group has been tremendously helpful, not only to my co-facilitator and me, but also to many others who join us at our monthly meetings.   Meeting and getting to know others who have a loved one with FTD can be life giving; providing us a place of respite in the midst of those who intrinsically understand what we are experiencing. It is deeply powerful to be with others who are also searching for insight, support, knowledge, understanding, and acceptance.

Our support group is attended by family members of and/or caregivers for someone suffering from FTD.   Everyone has a chance to tell his/her story and to update the group on the various issues he/she is dealing with at any given time. We have learned that there are many variations in the behavior, language and physical symptoms that are part of FTD. Each person is in a totally unique place or situation, yet we share the common bond of this journey and struggle, and we truly learn from each other. The success of one person’s caregiving strategy can many times be adapted to meet another’s needs.

We encourage each other to share what seems appropriate at the time: anger, resentment, frustration, grief, and anxiety born out of fear of the unknown. And, at times, we find some humor and try to support others to do so as well. Everyone has a different story to share with different challenges, a unique set of experiences and feelings. However, we are joined by the common threads of profound loss and the desire to survive the journey and provide the best care to our loved ones as possible. It is a known fact that being a supported caregiver makes a positive difference in patient care!

We are awed by the strength and fortitude of those in our group, and we take that strength with us, savoring it until we are able to meet again.

The Main Line Suburban FTD Family Caregiver Support Group meets once a month on the second Thursday of the month. We begin at 7 pm and end promptly at 9 pm. Meetings are held at the Main Line Reform Temple at 410 Montgomery Ave., Wynnewood, Pa. 19096. Please call either co-facilitator, Sandy Karger at 610-647-2842 or Sylvia Gentry at 267-323-2089, for additional information or if there is any way we can be of assistance.

To locate an AFTD Support Group in your area, visit: http://www.theaftd.org/get-involved/regions/middle-atlantic