Wednesday, September 5, 2012

The Faces of Caregiving: G-J - Early Onset Mild Cognitive Impairment

We continue our Family Caregiver Series with G-J who cares for her husband Steve. G-J and Steve are amazing advocates and parents to a terrific teenage son. Steve’s diagnosis of MCI has not seemed to slow down their volunteering and advocacy work!

G-J took time out of her busy schedule to answer a few questions for us about her caregiving experience and her advocacy work.

Robert’s Sister:   Tell us about your caregiving situation and a little bit about the disease your husband is facing.

G-J:  I am caregiver for my husband, Steve. He just turned 58 in June. In December 2009 when he was 55, he was diagnosed with Mild Cognitive Impairment (MCI), which may or may not turn into Alzheimer's. So far there is no sign of Alzheimer's, but one doctor thinks he has Lewy-Body, which is like a combination of Alzheimer's and Parkinson's. Prior to my husband's diagnosis, I had been my Dad's caregiver from August 2007 when my mother passed away until my Dad passed away 25 months later in September 2009. We have a son who is starting his junior year in high school and learning how to drive.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

G-J:   The biggest obstacle we've faced is getting a diagnosis we feel is correct.

Robert’s Sister:  How did you overcome that obstacle?

G-J:    Well, we're way beyond a second opinion. We started with the first neurologist who rapidly diagnosed MCI. I am thankful that our story is not one where it took years to get a diagnosis. While still seeing that doctor, Steve was assessed by a local university where we now return for annual assessments. We left the first neurologist and went to another neurologist who we are still seeing. We did try one more neurologist, but all that visit did was convince us that we're seeing the right doctor now. I'm okay with the MCI diagnosis, but not with the Lewy-Body. Truly though, that's really because I don't like that diagnosis.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

G-J:   We are involved with the local chapter of the Alzheimer's Association. Also, because of the research I did due to Steve's MCI diagnosis, I became involved with our city's Senior Center and started teaching a class, "Keep Your Brain Buff."

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

G-J:  I'm not someone who can sit and wait for something to happen. If there is any chance I can make a difference and improve Steve's situation, I'm going to take that chance. We're trying to keep life as normal as possible for our son, and if we don't fight this and try to help find a cure, things will be worse for Steve and others in the future. I was brought up in a family where both of my parents volunteered for everything from the military in WWII through the time they retired and were active in a local medical center and their community's library. I don't know how to keep from volunteering!

Robert’s Sister:  What have you done as an advocate or to share information with others?

G-J:   We speak on behalf of the Alzheimer's Association at a workshop called, "Making the Moments Count."  Steve is a member of the Advocacy committee for the Alzheimer's Association and went with them on a trip to Sacramento. I have participated in the Walk to End Alzheimer's and am speaking at one of the walks this year. I tweet about Alzheimer's. This September will be our second time participating on a panel discussion at a regional Alzheimer's conference on World Alzheimer's Day.

Robert’s Sister:  Is there anything else you want people to know?

G-J:  Despite everything, we're doing okay overall. :)

Robert’s Sister:  How can people contact you if they want to learn more about Mild Cognitive Impairment?  

G-J:   I blog on and you can connect with me on twitter. I am @gjandfamily.

Robert’s Sister:  Many thanks to G-J for her time and willingness to share her and Steve’s experiences! 

Next in our Family Caregiver Series, we will meet Bette who, for ten years, cared for her mom who suffered a stroke and then was diagnosed with Vascular Dementia.  

Before meeting Bette, however, Robert’s Sister will participate in the Talk About It Organization’s first annual Talk About Epilepsy weekend. Starting on Friday, September 7, the weekend posts will be full of epilepsy related information as well as an interview with Robert!  (Yes, I bribed him with a chocolate shake).

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