Here’s a question for you that we have been asked no less than 11 times in the last two weeks: “Do you feel the leadership (DoD, VA, service branches, Caregiver Coordinators) truly understand what Caregivers experience?”
This is a volatile question, to which I give no answer, but listen for the occasion that elicited the comment. There is great frustration by Caregivers that we hear often, and I think it boils down to this: Leadership is shielded from the family caregiver experience. We believe there are good leaders who care, but there are many surrounding them who keep controversy from their bosses. Is this good? In our opinion, no. For without real observed examples, the leader is not leading with the right information. And, can you fix something if you don’t know it is happening? No.
Daily living essentials matter. For a month recently, there was no hot water at one of the residence barracks at Walter Reed. For a month. Despite many mentions of this problem at group meetings, it wasn’t until the problem was quietly researched that progress was made. The contractor, subcontractor, and sub-subcontractor were contacted to ensure the event was reported appropriately to maintenance and afterward, the resultant mixing valve issue was solved. See, once they knew, proper process was followed and problem resolved. Hot water is pretty necessary for health and hygiene, wouldn’t you say?
Invisible Injuries are still invisible. A caregiver at a recent VA appointment was asked “Why aren’t you looking for a job? He’s doing so much better,”. She then explained the severe lack of short term memory for her husband that nearly resulted in a home fire catastrophe the previous week. Better yes, but good enough to leave unattended and take on a job? No. The doctor doesn’t live with your veteran 24/7 – you do. See that the record reflects the reality of your experience.
We suggest this to you. Respectfully note and bring real-life caregiving challenges to your appointments and town hall meetings. Unless leadership know about them, they cannot research situations or make changes. And, if they are not amenable, or there are repercussions, there is help. We must collectively raise the visibility of caregiver experiences to bring about positive change. Share your Caregiver challenges (and wins) in order to make it real. Together, let’s help leadership to lead!