By Kim Tally, LPN, CCRC
The Expedition 3 Study Alzheimer’s patients I have had the pleasure of working with for the past few years have made a huge impact on my heart and mind. For example, just recently I was apologizing to a patient for several schedule changes and I was told: “Oh, it’s ok, you’re like family to us; we’ll do whatever you need.”
Family.
These people are not my blood family, but they have become like family to me because I’ve seen firsthand the ups and downs of these patients and their study partners. I hurt when they hurt and laugh when they laugh!
The first patient with whom I went through the study participation consent process broke down in tears during the visit. I had to stop and re-evaluate if this patient was appropriate for the study, that I had to know without a doubt they CLEARLY understood what they were signing up for. I calmly reminded the patient that participation is voluntary and explained the study again. Ultimately, they chose to sign the consent.
When the study was filled, I had seven wonderful patients with whom to share this journey. Some of the patients seemed to maintain their memories at the same level as when they entered the study, others did not. Yet they all remained optimistic that “this was it” – the study that would change the course of treatment for Alzheimer’s, if not for them, then for future generations. I didn’t want this study to fail for them or for me.
As the study continues, I have gained even more insight into the destructive world of Alzheimer’s Disease, not just what it does to the patient but to the “caregivers.” I feel so drawn to help these people who are dedicating their life to caring for their loved ones. I try to give them encouraging words while they sit and wait for the patient to finish their visit. I send them emails with ideas on how to care for themselves while they care for others, along with birthday cards! (the patients get them too). In turn, the caregivers share funny stories and some even bring food for holidays – such as Cinco de Mayo! They want to make our day as much as we want to make theirs.
While I would love to see this disease stopped dead in its tracks, that’s not going to happen soon. But progress is being made. I am currently looking for volunteers for two more Alzheimer’s clinical trials. Patients need to be in the early stage of the disease, mild cognitive impairment or mild Alzheimer’s Disease.
I will continue to give 110 percent to each one of these dedicated patients and caregivers in hopes of making a difference, if not for them, then for future generations.
– Kim Tally is a Licensed Practical Nurse and a Certified Clinical Research Coordinator at the Clinical Research Center
