We want to share with you a very powerful story about a moment between Winifred, a resident at the Mt. Vernon Home, and Vanesa, the Resident Coordinator in that home. Vanesa first shared this story with Winifred’s family and they gave their permission to share it with the rest of the staff and our community. The story is a profound first-hand testimony of what it’s like to live with Alzheimer’s from a person who is living with it.

Winifred’s story

Here is the story, from Vanesa’s perspective: Winifred seemed troubled and kept looking around her room, so I went in and asked her if she was okay. She told me no, so I asked her what was going on. She said, “You know it’s the pits.” I asked what and she said, “This disease, the way it makes me feel inside.” I replied, “I know.” Immediately she said to me, “No, no you don’t know. You watch us, take care of us, feed us, and you know how we are and what we do all day. You might know us but you have no idea what goes on inside of us.” I had no words after that so I just listened.

Moment of Clarity

Winifred then stated, “You know my brain is deteriorating, smaller and smaller every time and I can’t do anything about it. I am speaking to you now and I know you are here now but in five minutes I will not remember that you were even here or that we spoke of this.” I said that she could count on me, that when she forgets, we will be there for her. She replied, “I know it now but I won’t in a few minutes, I trust you because I am forced to and because I see you have good hearts. Whoever invented this disease is cruel and had no idea what they were doing or how this would affect us.” I tried very hard to hold my tears in. She then promptly stated to me, “I want to thank you from the bottom of my heart for taking good care of us and I want you to know that I love you all. I want to tell you this now because in a few minutes I will forget about this.”

Profound Moment

In my 10 years of being a caregiver I thought I knew what dementia was like, but Winifred showed me that no one really has any idea; not the doctors, not the nurses, and not the caregivers. Only the ones that are going through this know. She shared with me a small sliver of what was going on in her brain at that time and it has changed my life as a caregiver, and most of all as a human. I can’t explain how intense this conversation was. It made me realize that, at times, they do know what’s going on inside of them and that when they remember, it really is the “pits.” Winifred has changed every way I see dementia. 10 years of this and I had never heard a single residents describe what it felt like. I will never forget those five minutes of real life conversation we had in her room. It is an honor to care for such a great woman.