Mother, May I?
by Teepa Snow, MS, OTR/L, FAOTA
For FTD – Frontal Variant (FTD-fv), asking and getting permission to do things is often a REAL problem. “Can I, do ____(something)?” is a very different question than “Is it OK if I do ________(something)?”. My perception of my ability to complete a task or form and maintain a relationship is typically different than your perception. My ability to use your cues is compromised, and my performance varies from moment to moment, based on initiation, sequencing, termination, and transition skills. But there is so much more to it.
This form of brain change can be one of the most disturbing for those around the person, as it tends to result in relationship issues and frustrations, more than most other forms. The person’s ability to be who they have been, seems to be broken.
Some of the greatest challenges can come from unawareness and lack of understanding on both our parts! Watch this clip from the webinar I did last year on FTD-Fv and see what you notice and could use to improve your level of knowledge, so that you can respond rather than react to situations that arise.
Did you come up with ideas about responding? How about environmental changes? Is there a possibility of a shared doing, versus something attempted alone? If you found yourself stuck and not able to think of much, it may be helpful to take a step back and seek support and guidance in how to live with FTD-fv.
On a different, but similar note. Let’s go ahead and talk about sexuality and intimacy in FTD-fv. The major shift or change that many family members and staff members may notice is that the person living with FTD-fv will not offer facial expressions that match verbal output and that the desire for physical intimacy is not expressed in acceptable ways or may now be so different than previous interactions that it just feels wrong.
What are two ideas you might have to change the dynamic and foster a sustained positive relation, in the face of the changes both of us are feeling and experiencing? Is it possible to use movement and music to find places and spaces where we can find each other again? Could this be a time when, as a care partner, I reach out to other’s in the person’s life to help us collectively come up with a plan that will work for all of us? Is it possible for us to change what we expect and how we respond, when we have the right support in place?
At Positive Approach, we believe it is just about the only route that will lead to life that can be lived well and fully for all involved. We also recognize the extreme importance of putting together the six puzzle pieces so that each person involved has opportunities to get something they like, want, or need every day.
Hopefully, when you are experiencing life with FTD-fv, you are able to find others who can provide what you are looking for so you can continue to be present when you are able AND so the person who is living it from the inside will be accepted for who they are, and not just missed for who they used to be.