JOAN’S  BLOG – MON/TUE, OCTOBER 18/19, 2010 – IS THERE A REASON?

So I’m beginning to wonder – is there a reason I have become the filling in a dementia sandwich? Let me explain. I have been coping with varying degrees of success with my husband’s Alzheimer’s Disease for about 7 years now. My blogs chronicle my evolution from a sobbing, hysterical wife to a resigned caregiver. The story is not pretty, but all spouses experience it, and with the launch of this website, we have been able to go through it together, offering support and validation to one another.

On Memorial Day Weekend, I moved my lucid, cognitively intact, 92 year old father from RI down here to  Florida to the Assisted Living Facility next door to me. A combination of the trauma of my stepmother’s death, the move from his home of 75 years, and his NPH (fluid on the brain) condition have resulted in the onset of…………….. DEMENTIA. He is not as bad as my husband, but his short term memory is slipping steadily, and he is perpetually confused about time and circumstances. That leaves me as the lone lucid filling in a dementia sandwich. My husband on one side and my father on the other.

You are well aware of what it is like to live with a spouse with dementia. The constant repetitious questions, the confusion, the inability to hold a coherent reciprocal conversation. I have somehow lived through his arguing, rages, tantrums, and serious cognitive decline. Now imagine what it is like to double it.
My life is like a 3-ring circus. I tell my husband that I am going into the bedroom to lie down because I am exhausted. Half an hour later, the phone rings. I pick up. Sid has picked up the extension. Here is the conversation. Please keep in mind that I do not have an imagination fertile enough to make up nonsense like this.

Joan: Hello.
My father:  Joan? Joan? Joan?
Sid: Joan? Why are you calling? Hello?
Joan: Sid, hang up the phone.
Sid: What? What do you want?
My father: Joan? Joan? Joan?
Joan: Sid, HANG UP THE PHONE.
Sid: Huh? What? What’s going on?

I walk into the den, and my husband, phone in hand, says to me, “What are you doing here? I thought you were at your father’s! I was just talking to you on the phone. How did you get here so fast?" I then told him that I had been lying down in the bedroom (which I had told him before I went into the bedroom), and that it was my father who was on the phone. He looked totally confused and hung up the phone.

I then talked to my father:

Joan: Okay Daddy. I’m here.
My father: (Laughing) Oh, it’s you. I thought I was talking to Sid. Where were you?

And so it goes.

This week I was sitting with Sid, and he was asking me for the umpteenth (I gave up counting) time what we were doing that day. I told him. I then walked the short path to the ALF to visit my father. He loves to read. I have ordered him a variety of large print books. The first was Steinbrenner, The Last Lion of Baseball- 750 pages, which he finished, and I took back to my house. On this visit, he asked where the Steinbrenner book was. He said he wanted to read it. I told him he already read it. He was adamant that he hadn’t read it. Having 7 years of dementia experience with my husband under my belt, I knew enough not to argue. I said I would give it back to him. Sunday, he was in my house, and I gave him the book. He flipped through the pages, said he didn’t read it. Fine with me. I’m not going to argue. A little while later, he picked it up, looked at it, and said he didn’t want it because he read it. Fine with me.

Back to my original question – Is there a reason I was given dementia to deal with? If there is one thing in life that I value and need, it is intellectual, meaningful conversation. I love language, am intellectually curious about almost everything, and thoroughly enjoy engaging in exchange of ideas. None of which I get while surrounded by dementia. Maybe it is a test of my sense of humor, which is not only intact, but thriving in the midst of this circus.

MESSAGE BOARD TOPIC: Is there a reason?

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