Caregiving

by Bud Focht

Hi, my name is Bud and ever since my wife Terry was diagnosed with Early Onset Alzheimer’s Disease, I have been called a Caregiver.

Now I’ve been called a lot of things in my time, many not fit for print in a family newspaper (not sure what the rules are on blogs. Of what I’ve seen I think George Carlin’s entire list of seven words you can’t say on TV is eligible for use on blogs), but this Caregiver moniker is new to me.

So I do a few more chores around the house. Big deal.  Back in the 1980s I always wanted to be Michael Keaton in Mr. Mom. I would always say to my father, an electrician, when discussing the wiring in our kitchen “Yea, 220, 221, whatever it takes.”

Now I fix Terry’s breakfast and supper, and if I am home I fix her lunches. (Combination of me not liking Terry using the oven or stove and combination she sometimes doesn’t think of making herself anything to eat). I give Terry her meds every morning so she doesn’t have to try to remember if she took them or not. I do the dishes and the laundry, because it just doesn’t dawn on Terry to do them. I’m sure if I ask her to do it she would with no problem, she just doesn’t think of it.

If we go somewhere, I never let Terry out of my sight. I hold her hand like we were teenagers when we walk in crowds or near traffic. I make more decisions for her, almost all, especially the important ones. I now have to know where everything in the house (and her car) is, where Terry puts things, so if she doesn’t know where they are, I do.

It’s a good thing my given name is Anthony. Saint Anthony is the patron saint of lost things. Catholic school kids for generations have been told by the nuns to pray to St. Anthony if they can’t find something. At our house, it is like Easter Sunday every day with all of the Easter Egg hunts we have, looking for hidden items.

I’m trying to find a comfortable balance between Terry’s independence and my increased assistance. I don’t know if doing all of these things makes ME a Caregiver. I think I’m just a husband.

A husband who is taking care of his best friend, his soul mate. There is nothing that I would not do for my Terry.  Terry, on the other hand, has over the years often sung that song by Meatloaf to me. “I would do anything for love, but I won’t do that!”

For me, the caregiving is the easy part. It is the role changes that bother me the most, not so much my role but Terry’s role in our relationship. She is slowly but surely moving from spouse to ward.

Sometimes I feel a great sense of aloneness. Aloneness is not the same as loneliness, it is much worse. Terry was once my confidant, someone I could turn to for advice. I miss the conversations Terry and I used to have. Terry has always been reserved, quiet, but never failed to throw her two cents in around the house. These days it is more like me constantly asking “a penny for your thoughts?” In pop culture the running joke is that men always wish their wives would let them get a word in edgewise. Not in our relationship. If I don’t start a conversation, we could go hours in silence. Hours that are becoming scarce.

But despite the aloneness and the added chores and responsibilities, I feel Alzheimer’s has brought Terry and me closer together, if that is possible. We’re joined at the hip, have been for over 30 years. Recently when we became ‘empty-nesters’ we reverted back to our newlywed days. Instead of our roles being parents we were two individuals living together, taking care of ourselves. Now, there is a lot more of an ‘us’ then a ‘him & her’. Which is good as well as bad.

I mentioned that I give Terry her meds every day.  Like Reader’s Digest says, Laughter is the Best Medicine. Terry continues to laugh every day, which is good medicine for me as well as for her.  I’ve seen a lot of beautiful things in my life (my kids being born, the sunrise over the clear blue Pacific, the ball going over the fence for my first collegiate home run) but there is nothing as beautiful as Terry when she is laughing.

Even though we know there is no cure for Terry’s EOAD, I believe there is some healing that can occur.

I don’t mean a physical healing (those plaques and tangles are forming no matter what we do), but more of a healing of a spiritual nature.

There is a difference between cure and healing. Doctors Cure a disease. In the case of Alzheimer’s, that is Mission Impossible. Healing is a process with the patient.

Healing means to make whole. To make Terry whole, or keep her that way, means helping her be able to lead a fulfilling existence without being overwhelmed by her circumstances.

We visited her family last weekend for her mother’s 85^th birthday. The next morning Terry was writing in her memory book. I expected it to bring a smile to Terry’s cute little face, having just enjoyed a rare visit with her family. But it was just the opposite. She was sad, crying even, all morning. She told me she was dreading the day she did not remember her mother.

This was the first time in a long while that Terry has been physically upset over having EOAD.

So that’s where I come in, the husband, the Caregiver. I’ve got to keep Terry smiling, for both of our sakes. I’ve got to keep her talking. I’ve got to keep her whole. For as long as I can.

“Good Morning, Bud. Your mission, should you decide to accept it…”

I accept it without hesitation. It is not an impossible mission. Sometimes I just hope I don’t self-destruct.

Until next time, give and take care.

Bud