It was Alexander Graham Bell who said, “When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.” Mr. Bell phrased that so eloquently. What I was thinking was that when one door closes sometimes your foot gets smashed in the door and it takes a while for you to get it out so you can look around and find that open door because maybe that door is open just a little bit, and you need to go over and open it more.

Steve’s MCI diagnosis in December was followed by the sound of a slamming door when his employer put him out on disability. And yes, my foot was caught in that door, although I kept moving on with the day-to-day tasks of keeping a household and family running.

I think Steve’s done an exceptional job of pulling his foot out of the door. He immediately signed up for a machine shop class and started learning new things. Together we joined an introductory group at the Alzheimer’s Association for younger people with an early onset of memory loss and later began attending their continuation support group. Steve is now taking a sheet metal class and mentoring young men in a sheet metal club at the school. He is actively trying to determine how to reinvent himself.

For me, except for having my husband home, not much changed and I didn’t do a lot to make things change. And then we participated in the panel discussion. Participating in that seems to have flipped a switch inside of me and made me feel like maybe there is something after all that I can do to help Steve. I tugged on my foot and it came out of the door!

First I e-mailed the Alzheimer’s Association headquarters. I told them our story and explained that they needed a better advertising campaign. People think that memory loss only happens to older people. MUCH older people. Not people in their 50’s and that people need to know about this, too. I also stated that they needed a better slogan, if they even had one. They e-mailed back the next day and said they had an advertising campaign and directed me to our local office. When I read the letter to Steve and our son, it was our son who pointed out that it was a polite response but that was about it. At least they responded!

World Alzheimer’s Day was the next week, and frankly, it was the first time I ever cared about it. I was anxious to read all the articles about it in my local paper, and hear the stories about it on my favorite NPR station. And guess what? There was nothing! No stories in the paper and no stories on the radio. I was disappointed and decided to let them know.

I e-mailed the local newspaper and told them that I was disappointed there were no articles about World Alzheimer’s Day including no article about the reports published that day. I also said their full page coverage of whether or not the celebrities on Dancing with the Stars had plastic surgery made Orange County look very shallow. I sent an e-mail to the radio station and expressed my disappointment in their lack of coverage as well. I mentioned that stories about MCI and EOAD need to be told, and I told them about us in two sentences. I was very polite. And I e-mailed the Alzheimer’s Association again telling them about the lack of coverage that World Alzheimer’s Day had received.

Wednesday I received a phone call from our local Alzheimer’s Association, unrelated to the e-mails inviting me to attend the Visionary Women’s Luncheon as their guest. It is an event celebrating caregivers and they were inviting a number of people. I said I would go and Friday mingled with other caregivers and enjoyed lunch while Olympia Dukakis spoke.

Meanwhile, the phone rang Thursday afternoon and I saw on caller ID that it was my favorite NPR station calling. I figured it was pledge time and they wanted money, but I answered it. Holy Mackerel, it was Larry Mantle who I listen to almost daily on KPCC! I was beyond excited! I just couldn’t believe I was talking to him on the phone and actually said, “You sound just like yourself!” His producer had forwarded my e-mail to Larry and he was calling me for more information. We talked for a little over ten minutes, during which time Larry agreed that MCI and EOAD do not get much coverage and need more. We ended with his telling me that he will be talking to his producers.

I felt like maybe I was seeing a glimmer of light from an open door.

I e-mailed someone I know at the local Alzheimer’s Association to tell them about my phone call and e-mails. She said that someone from their office will call me early this week to talk to me more about how we can bring further awareness of EOAD and MCI.

And while all of this was going on, I e-mailed someone I know at our city’s Senior Center and volunteered to teach a weekly one hour brain exercise class. I’ve looked for something like this for Steve but haven’t been able to find it. My e-mail was forwarded to someone else. I spoke to that person today and my weekly class will begin November 2nd!

I am excited. I really feel like I’m doing some positive things that hopefully will not only open a door or two, but may help Steve and others with like him.

Program Note: G-J will share her tips for opening the door and getting your message out and into the community on Monday, October 4, at Noon CT (1 p.m. ET, 10 a.m. PT) on Your Caregiving Journey. Be sure to listen here.

Related Articles

• On World Alzheimer’s Day, Words from a Researcher (caregiving.com)
• Unique Situation (caregiving.com)
• Upcoming Panel Discussion (caregiving.com)

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