JOAN’S BLOG – MON/TUE, MAY 4/5,2009 – A LIFE OUTSIDE OF THE AD TUNNEL

Alzheimer’s Disease sucks the caregiver spouse into the Alzheimer tunnel. It seems to me that in the beginning, it is possible to crawl backwards towards the light of the “normal world” and spend some time there. As our spouses’ disease progresses, we are sucked deeper and deeper into the tunnel, in which the road back is now too far for us to reach, leaving us no choice but to keep pushing forward in the darkness, until, eventually we will see light at the end of the tunnel.

What happens to us while we are in the darkness? We struggle; we educate ourselves about the disease; we learn to be better caregivers; we gain friends who share our difficulties; we lose friends who cannot understand the tunnel and fear its blackness; we find emotional and mental strengths we did not know we possessed.

But who are we when we finally emerge from the tunnel? Our experience has surely changed us. We have been away from the “normal” world for so long that we must readjust, make new friends, find new activities that do not revolve solely around Alzheimer’s Disease, but still incorporate our newly gained strengths, insights, and personality.

In previous blogs, I have discussed the importance of cultivating non-Alzheimer activities and friends while still in the tunnel, so that we are not totally consumed with Alzheimer’s Disease to the exclusion of all else. I have discussed attempting to keep one foot in the outside world, while the rest of the body is inside the Alzheimer tunnel, and I have discussed how our Alzheimer life has become the "normal" for us.

I do not know about you, but I am now finding it almost impossible to find a life outside of the Alzheimer's world. I, who do not yet have to bathe, dress, feed, and “clean up” my husband, still have no time for a life outside of Alzheimer’s Disease. My website and my Alzheimer advocacy is now my full time job. Working at home allows me to be available for my husband’s needs, doctor’s appointments, medical emergencies that seem to arise on a regular basis, as well as support group meetings and activities. Add in household responsibilities of handling insurance, bills, record keeping, cleaning, cooking (barely), laundry, driving…………ad infinitum, and there is no time for “outside” interests. 

It makes me wonder – who will I be and what will I do if I emerge from the Alzheimer tunnel alive and somewhat healthy?  I will never cease advocating for Alzheimer’s awareness and funding, but I do not want it to be my entire life. I am thinking that maybe I will take my new found confidence in my writing and speaking abilities and use them in areas other than Alzheimer’s Disease.

Are any of you able to participate in non-Alzheimer activities? Do you ever think of who you will be and what you will do when you emerge from the Alzheimer tunnel?

Message Board Topic: Alzheimer Tunnel

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