Educating the Caregivers

For someone with FTD, everything we attempt to do quickly becomes a challenge. Everything takes much more effort than it did pre-FTD and can leave us totally exhausted. Throw in a few curve balls, and the task quickly becomes not achievable and may leave those of us with FTD in worse shape than we were going into the activity. Yesterday was a great example of that for me.

Two or three months ago, I was granted permission to set up a display table on FTD at a local conference being held by the Geriatric Interest Network. Since I  had just done a display at our local mall and this one would be smaller, I believed it would be much easier.

Of course, things don't usually go that way. The person coordinating the conference was suddenly no longer the one in charge and her replacement had never coordinated one of their conferences before. It was no longer clear whether the permission to display would still be granted. After waiting a couple weeks, it was finally approved and the fee to display was again waived. The coordinator and I touched base a few times and the day before the event, she called and told me that I could definitely have some space on the display table. 

Problem! I have a display board and enough materials to fill an entire table with no room left over. As I usually do, I started to panic and then realized I was defeating myself. I decided that even if I could only display a portion of the AFTD's information, that was more than would have been there previously. This organization sponsors conferences for both professional and non-professional dementia caregivers each year, for a total of four a year. I really needed to be as cooperative as possible so that we could have the opportunity to display at more of their conferences. 

I am not known for my calm and laid-back personality (to put it mildly), but this time I was and there was a reward for this phenomenon. When we arrived (My sister is also a volunteer for the AFTD), the original coordinator was there right beside the new one. They had an entire long table set up for us right next to their registration table and bent over backward to make us comfortable. The last part of their conference was a healthy lunch and they insisted we join them. We felt totally welcome and part of the event.

The conference was held at a local rehab hospital, Health South. They closed their employee cafeteria to accommodate the conference and could not have been more helpful. The best part was, that since the cafeteria was closed, the employees had to go into the kitchen area to pick up their lunch "to go." The way to the kitchen was right past where our display was so we not only had exposure to everyone attending the conference, but also most of the employees.

Many staff members stopped by and checked out the display and many picked up some information or asked questions. The best and worst moment of the event was when one of those staff members stopped by and was closely reading my display board. I started picking up some printed info to give her and she turned to me with a look of joy and sorrow.

This woman started saying, "This is me, this is me! I keep telling the doctors there is something wrong, but they won't believe me." Considering this is the town where all I received were three incorrect diagnosis, I was not surprised. We gave her all the information we could, along with the hotline number for the AFTD. She gave me an awesome hug in return. My sister and I were so happy that we were able to help her. We were also broken hearted that one more person most likely has the disease. 

I am guessing she was in her mid to late 50's. I don't know what her position is at the hospital, but she definitely was someone I would love to have caring for one of my loved ones. I pray that we are wrong and that there is a much better answer for her symptoms than FTD so that this awful disease does not have the opportunity to steal one more valuable life.

The conference itself strayed from their usual format of having healthcare professionals come in and speak about dementia. This time, it was all about "caring for the caregivers." They had massage stations, reiki stations, yoga and more. All things to help the caregivers learn to relax and take better care of themselves so that they are better able to care for their loved one. 

I know I often write about how important the caregivers are and wonder whose role is harder, the one with FTD or the caregiver. It was wonderful to see this organization recognizing that and providing some comfort and reminding the caregivers how important it is to take care of themselves so they are able to take care of their loved one. I was so happy to see the direction they had taken for the event and I loved seeing so many relaxed and smiling caregivers as they were leaving at the end.

I hope the Geriatric Interest Network appreciated what we did as well because I hope to be welcomed back again for their next conference. 

Of course, the event took its toll on me. I was totally exhausted after the six hours. My FTD symptoms worsened afterward even though I was so happy. It continues to amaze and frustrate me how anything can cause a setback. Fortunately, this time, I should bounce back after two or three days of extra sleep and less activity.

If you are a caregiver, please remember to take care of yourself first whenever possible.