Who's Who?

 

Our caregiver support group has a social event once a month.  It's a great time for patients and caregivers to enjoy stress free outings.  But sometimes we aren't sure who is who.

A Memorable Negotiation in a Smoke Filled Room

Back in the days when I was growing up, people would leave cigarettes sitting in a can on the living room coffee table for their guests to enjoy. One day, as my father was working at his desk in another room, I saw the cigarettes sitting on the coffee table and I quickly picked them up, along with matches and an ashtray, and hurried into my room to smoke. I was five years old. After I had lit my cigarette, I heard a knock at the door. It was my father calling to me, "Pauly, Pauly, what are you doing?" "I'm playing with my cars." I said back to him, as I pushed the toy car that contained my cigarettes under the bed. He opened the door to the cigarette smoke clouded room and immediately knew what I had been doing. My dad looked at me and said, "If you tell me the truth, you won't get spanked." I decided that was a good deal, and told him what I had been doing. My dad didn't shame me about it, instead he refocused and asked me if I'd like to go and grease the wheels on my toy truck. This is one of the best memories I have of my dad.

Stepping Deliberately

 

These stone steps leading into the woods are beautiful, but they are difficult for me to walk on because of their irregular shapes and irregular surface texture. Before dealing with Alzheimer's, ascending or descending a staircase was a routine act of mobility for me. Now I'm challenged by the irregular shapes and textures.

How Alzheimer's impacts me and my family

Adding salt to the water softener is one of those chores that husbands become accustomed to doing. Last night, as I struggled with opening and emptying the bags of salt, I was reminded of how my disease impacts those around me. 

Sally, my wife and tireless caregiver, is frequently put in the position of having to think, plan, and execute for both of us. Alzheimer's is my diagnosis, but it's also completely Sally's disease, too. She's put in the difficult, and at times unfair, position of having to take ownership of this disease in order to manage it. One by one, over the past six years, chores and responsibilities have shifted from my plate to hers. Things such as making appointments for oil changes and car repairs now find their way onto Sally's to-do list. This causes me concern for Sally's health and well-being.

Easing the burden on the primary caregiver is crucial. Friends from my men's group at church took turns mowing the lawn and snow blowing the driveway. In addition, our son-in-law and grandson have also come over to do yard work. We've occasionally had meals cooked for us by our daughter, Holly. Doing things with the kids allows me to get out of the house and be active. Because Sally can't be everywhere at once, we have caregivers who come during the week. Each caregiver brings something different to my day. My weekly routine includes working out at Lifeime Fitness, singing in the Lakeville Senior Chorus, blogging a photo of the day, and a wide variety of other activities. Sally attends a group for Alzheimer's caregivers where she gets re-energized and supported. Recently, our daughter Heather traveled to Boston to be our driver during our trip to East Hampton, Mass for my 50th high school class reunion. This was a great help and comfort to both Sally and me.

Alzheimer's shaves off a little of my life every day, but then the unexpected benefit is that friends and family around me pick up on that and restore lots of interesting activities to my life. And what a blessing that is on practically a daily basis. The blessings come about through the helpfulness and creativity of friends and family who are steadfastly determined to keep me from drying up in a nursing home someplace.