Our New Reality: Alzheimer’s

Turned topsy turvy by Alzheimer’s, our life is settling down into a new reality. After weathering the storm of the initial diagnosis, John and I have begun to straighten up our house – literally and figuratively. We had to make some pretty hard choices: Do we drain retirement funds? Save even more? Give it to the kids now? Blow it all and move to Hawaii?

We decided to do a little of each. We drained an IRA to pay off some bills and redo the kitchen. My fear was that 50-year-old cabinets wouldn’t be a great selling point if I had to quickly get us out of a mortgage. I didn’t realize how disruptive construction would be on John. Eventually I had to ask our 22-year-old granddaughter to move in with us to provide a layer between our contractor and my husband. It was a difficult month.

I was worried about what would happen to John if something happened to me. We visited a lawyer and created a family trust. I was soothed that John made some decisions now about his care later. When the time comes, I will be comforted knowing that we talked about what he wanted to happen. I won’t feel guilty.

We took a trip to Maui that was both challenging and fun. Glad we did it, don’t think I’m prepared to do it again any time soon. John was disoriented by the new living accommodations: often opening the front door, while intending to enter the bathroom. I didn’t feel that I could leave him alone for more that a few minutes for fear that he would get lost. But we were in paradise, one we had visited many times, so once and a while everything seemed normal, including us!

Within days of returning home John began hallucinating that there were people in our house and that inanimate objects were talking to him. A trip to the doctor discovered an infection was the cause of the hallucinations. A real surprise was that John scored really high in the cognitive tests he took that day. Our doctor said, “keep doing whatever it is that you are doing!” Hard advice to follow when your husband is having a conversation with a bronze statue.

In early spring the Alzheimer’s Association invited us to participate in a support group for early onset Alzheimer’s patients and their caregivers. I can bring a problem I’m having with John to the group and get great ideas from people that have tested out the solutions. What a life saver that group has turned out to be. I no longer feel alone.