Shared Stories


On the road to New Bern, there is plenty of time to think.  I think about all the shared stories of those in Alzheimer world. This morning I received an email from a fellow sojourner.  I say "sojourner" because the definition refers to temporary residence.  Those of us who live with our loved ones in Alzheimer world are sojourners together in our temporary world effected by Alzheimer disease.  This beautiful wife shared what seemed to be "my" story.  Retiring from her practice, possibly selling her house, yet not knowing where she will go.  Her husband has been in his new home for about a year and a half and states "it's torture to watch his essence fade, never to return....but he still gives the best hugs."  She is able to focus on the good in the midst of the bad.

Yesterday, I was with a friend who's wife has been in her "new" home for about 6 months.  Our stories are similar too.  Somehow we find it funny how she loves to be in the bed and how he and the staff have to search to find who's bed she has crawled into.  Not funny....but somehow brings us a chuckle.  She doesn't always know who he is...but recently looked at him and said, "you have beautiful eyes."  which is probably why she fell passionately in love with him over 50 years ago. 

If there is anything consistent about this crazy disease, it's that it is totally mind boggling.  Though the boggled mind is the patient's norm,  the caregiver's mind is boggled most of the time too...always questioning "why?"  "what was he/she thinking?"  "why did he do that?" "how long can someone live like this?" "what do I do next?" and so on.   

The longer I've played this role of caregiver, the more I've realized that it is the caregiver who has to change....not the patient.  There is no amount of pushing and prodding or "figuring things out" that will bring our loved one back. I've stopped saying "remember when we...."  Of course he doesn't remember.  Why would I ask that?   Somehow, I think if I remind him about where we use to live or when we went to wherever, he would remember and somehow it will bring him back.  It won't.  Maybe that happened in the beginning stages, but certainly not now.   There are no expectations and I delight in any surprises. 

As of a few weeks ago, Jerry had quit eating.  He was growing weaker and more foggy. Hospice was going to be called in.  BUT GUESS WHAT!!!!  He is eating again and a tad less foggy again.  In fact, yesterday when I went to visit, I knelt down beside him, held his hands,  gazed into those beautiful eyes and said, "Hi Jerry.  It's me."  He blinked and tried to clear his eyes and after a few minutes said, "I believe I know you."  

So we find ways to see the good in the bad and we keep on trucking.  We don't dwell on the future because, for me, I know that God sees the future that I cannot see.  I'm seat belted in on this ride, safe, and holding on one day at a time, one moment at a time.   There is peace in that.