Throughout my years of writing about eldercare I've come into contact with many fantastic caregivers. My newspaper column brought me the friendship of one outstanding caregiver, a retired college professor, named Bob Tolbert.
Bob has contributed to my newspaper column, and he regularly comments on my other work, generally giving me a pat on the back. Occasionally, he'll add to what I've said with thoughts about his personal experience.
Bob is filled with the wisdom of a long-time, hands-on caregiver as he experiences the pain of watching his beloved wife Jane "disappear" into Alzheimer's.
At this time, Bob still cares for Jane at home, with some help from an in-home caregiver. Some time ago, Bob sent me what he calls his "musings" from a sleepless night. I've wanted to share his painful but eloquent words, as I know many people will relate. With Bob's permission, I'm sharing with you a look into the world of spousal caregiving and pain.
JANE, WHERE DID YOU GO?
By Bob Tolbert
Jane, we were married 56 years ago on November 7, 1953. This morning you asked, "Who are you?"
You look me in the eye and ask where Bob is. When I say that I am Bob, you answer, "No, I mean my Bob!"
You look at me and say, "You look just like Bob. But I don't know you!"
You look at me and see an old man (after all, I am 81). You say you can't be married to me, an old man.
It is bedtime and I start to get you ready for bed. You say you aren't going to sleep here. You see me as "a dirty old man." You don't even want me to take off your earrings!
Sometimes, you can be convinced we are married. You wonder why we haven't lived together for all those years.
You may accept that we are married. Then you ask if we have any children. I tell you that we have two boys, one born in 1956 and the other one born in 1960. You don't know their names, if they are married, or where they live
You like to ride in the car and since I like to drive, we take lots of rides. You ask whose car is this.
Most of our drives take us out in the countryside where we can admire the scenery. You ask if I like living here, out in the country. You follow this with, "How does your wife like living out in the country?"
While we were in the doctor's waiting room you became agitated. You were scared because you didn't know your own name.
We moved into our condominium fourteen years. You wonder whose place this is. And what are we going to do if the owners come home.
Our little log cabin on a lake shore in the woods has been our retreat for thirty-two years. "Whose cabin is this? Why are we here?"
We frequently take rides on our pontoon boat. At the end of our ride I tie up to our own dock. You ask why we are stopping here and how are we going to get home.
You took full responsibility for your mother in her declining years. You were with her when she died thirty years ago. Now you insist on calling her on the phone because you are sure she is at home waiting for you.
Your father died forty years ago. When we go out, you ask if he is going to meet us at the restaurant.
You say that you want to go home. But you are thinking of home in West Springfield, Massachusetts, as it was sixty years ago.
Our travels all over the world are recorded on videos and in albums. When we view a video tape of our trip to Switzerland you enjoy it. Then ask if you went along on that trip.
When we drive from Fargo back to Moorhead and you read the "Welcome to Moorhead" sign. You say, "Congratulations! You found our way back to Minnesota."
You were the president of the Moorhead Friends of the Library. Now you have several unread books. You read nothing by yourself. You follow along when I read greeting cards to you.
We had finished our meal in a restaurant and the waitress had cleared away the dishes. You wondered if they were ever going to come take our order.
You always enjoyed entertaining friends for a dinner party in our home. Now you will put the knives and forks on our place mats, if I ask. You are never sure how many are coming for supper.
You were always so much fun enjoying everything we did. Now you rarely smile. I haven't heard your wonderful laugh for many months.
When I kiss you as you go to bed you may still say, "I love you." Jane, are you still there?
Published On: October 09, 2010