JAN'S STORY
Mon., August 23, 12:30 PM
I knew much of the content of Jan’s Story before I read it, because it had been featured on “CBS Sunday Morning.” That’s not too surprising, as the author, Barry Petersen, is a CBS correspondent. Knowing didn’t make it any less heartbreaking.
Jan Petersen was a vivacious attractive woman who had worked as a television journalist. She worked less after they married, as she preferred to accompany Barry on many of his worldwide assignments. She loved people, she enjoyed entertaining, she drew deep pleasure from living and traveling in Europe and Asia. But in her mid-fifties, she was diagnosed with Early Onset Alzheimer’s. Neither of them realized it then, but it was the beginning of the end of everything they loved.
When you read a story like this, you compare it with what you know. I thought to myself, Barry doesn’t realize how much worse it would have been if he did not have a job with a decent salary, if he did not have long-term disability insurance for Jan. He could afford to hire caregivers, not realizing that eventually the caregivers become “the enemy,” the target for the patient’s unreasonable anger. I think Alzheimer’s patients get very scared, and it comes out as anger.
We follow Barry’s journey as Jan deteriorates, until he cannot leave her home alone, until finally he is forced to place her in assisted living. He spends considerable time and money to make the new place pleasant for her, whether she realizes it or not, only to be criticized by people who have no idea what it’s like living with an Alzheimer’s patient.
I can empathize despite the difference in our situ-ations. My husband has slight dementia — well, he is over eighty — but his bigger problem is deteriorated lungs. Even with U.D.’s help, the time came when we could not keep him at home. He still blames me for putting him in the Home.
Over the past few years, Barry has watched Jan deteriorate, though she still looks perfectly well. (CT scans show that her brain is shrinking, however; there is no doubt that she is physically ill, even though the disease manifests itself as a mental condition.) At this point she welcomes him when he comes to visit but doesn’t know who he is. She will, however, complain on occasion that Barry never comes to visit any more — even if he was just there.
You have probably heard how difficult this situation can be when it’s your parent who is losing his or her grip on reality. It is more difficult when the patient is your spouse. Not only did you have dreams and plans together, the healthy spouse feels the guilt of not having done a better job of caring for his/her mate. You feel you are required to continue to be the caregiver, even as it makes you ill. (Statistics show that the caregiver spouse is more likely to die prematurely than others of a comparable age.)
All that I understood. Barry also felt that, because it was his job to protect his wife and he couldn’t do it, that somehow makes him less of a man. I don’t carry that kind of guilt, but then I am older and have learned more about dealing with the lemons that life gives you.
It’s a sad, sad story, but one that is well worth reading. We always can learn from the experiences of others.
