Friday, February 11, 2011

In the Beginning there was Billy and Kathy

If you find yourself reading this you probably know Billy and me, and you probably know our recent past, but indulge me to share that again. Billy and I married in 1981 after dating for five years. During the first five years of our marriage I taught school, and Billy worked for the state of Texas and then for a retail nursery; we bought our first home; and we welcomed two beautiful children into our lives. Shelley was born in 1983, and Andrew was born in 1986. Soon after Andrew's birth, Billy was transferred to west Texas, and off we went. We intended to stay in that area for a year or two, and 20 years later, we found that we had raised our children in west Texas, and we had put down pretty deep roots in that desert sand. We felt the yearning to return to a place near our family for several years before acting on the desire, but when my brother was diagnosed with stage 4 colon cancer in late 2005, we suddenly felt an urgency to head back home. Making a big move when you are approaching age 50 is a challenge, but when the opportunity came, we sold our house and packed up our belongings to come home.

Our daughter lived in another state at that time, and our son stayed back in west Texas to work. Our immediate family had realized for several years that Billy's memory was failing, and we had concerns. I had insisted he see our family doctor who did the simple memory test on him. He passed it with flying colors, and she referred him to a psychologist who felt that Billy had adult attention deficit disorder, putting him on Aderral. When we moved to this area, he sought out the help of a psychologist and continued to take ADD medicine. I never noticed an improvement in his memory or his ability to attend to details. In June of 2007 we received the devastating news that our son had died from an accidental overdose. Losing Andrew was the hardest loss we've experienced, but the care and compassion we received from family and friends was comforting. That summer, we put Billy's mom on hospice. She had been diagnosed with Alzheimer's disease many years before that time and had been in an Alzheimer's facility for several years. In May of 2008, my brother lost his battle with colon cancer and died at the age of 47. He had been such a support to me as we sought answers to Billy's memory issues, and I miss him everyday.

In February before that, Billy had seen a neurologist and a psychologist who both used the term mild cognitive impairement and put him on Aricept and Namenda. I had contacted the Alzheimer's Association months before that looking for advice on dealing with the disease. I also took him to UT Southwestern Hospital in Dallas where a leading psychiatrist interviewed him and administered the MME (a test for memory). He confirmed the mild cognitive impairment and told us he felt that Billy had a 50/50 chance of developing AD. Within 6 months or so, Billy's condition seemed to deteriorate and work became quite a challenge for him. He seemed to struggle constantly with all the details of teaching. Because Billy was teaching in the same school district where I am a principal, I had a professional relationship with his principal. Billy told me of a few conversations he had with his boss, and I felt like it was time to intervene. With some hesitation from our HR department, Billy was finally able to give written permission for me to visit with his principal about the issues he was having at school. I knew he was having a rough time at home, but I really didn't know about his everyday life at school.

When I had a long visit with Billy's principal, I wasn't prepared for how difficult it would be to hear all the issues he was having. I had been so conflicted because as a professional, I know the importance of the teacher's abilities in the classroom. Being a good teacher entails so much more than knowing your subject matter. It requires positive relationships with students, organization, lessons that keep students engaged, grading, parent communication, etc. Billy was struggling in every area, and as a ninth grade teacher, I believe some of the immature students were "eating him alive." I knew the principal was doing the best he could to keep parents at bay, and I knew what had to be done.

Telling Billy that it was time to check into disability retirement was one of the hardest things I've ever done. He really struggled with acknowledging that he could no longer do an adequate job of teaching. We were both concerned about finances because we had lived on both our salaries for years and years. His retirement annuity is less than one third of what his salary was, so in essence, we lost an income. One of the biggest differences in early and late onset AD is that most folks with late onset are already retired and usually do not have dependents at home other than a spouse. Early onset AD folks often have children at home or large debt.

Billy has been on disability retirement now for almost 2 years. The first year and a half, he stayed at home by himself while I was at work. When he had a complete evaluation in the spring of 2010, the doctors told me he should not be left alone. I really had not fully realized that, and I had not prepard well for what we would do if he needed someone with him all the time. I work 8-10 hours each day and often have obligations in the evenings. I decided I would assess things while I had some time off during the summer. Shelley was getting married in July of that summer, so we were incredibly busy during my three weeks off in the summer. The first week I returned to school in the summer, Billy had major delusional episodes daily, and I got a very clear message that he could not be alone all day every day while I was at work. He currently goes to an adult daycare facility while I am at work. The daycare he attends is fabulous. I had envisioned a sterile nursing home type place, and I really dreaded it. Instead we foud the Rose Cottage which is like a big beautiful home with nice living areas, a coffee bar, and wonderful study with computers, books, and games. He loves it, and he feels safe there. From the way he talks and acts, I think Billy believes that he is an employee at the Cottage. He doesn't like to miss going and worries he might get into trouble if he does. All the folks who attend the Cottage are self-pay, and it is not cheap. After struggling for so long, I made the decision to ask for help. My sister and brother in law welcomed us into their home, and we now live with them. That allows me to pay for daycare - which costs more than many people's mortgages. The care he receives there, and the peace of mind that I have when he is there make it worth the sacrifice of not having our own home. The living arrangements have worked out well so far, and we are in our fourth month of it. I will be forever grateful to Leslie and Shawn for the selfless act of allowing us to move in with them. They have two little ones: Connor will be 4 in April, and Claire will be 3 next July. Life at home is never dull! We all help each other, and I am so thankful to have their help with Billy.

I've written too much on this first post, and I plan to scale it down from now on. I get a bit too verbose when I write, but I have so much I want to share. Life is different now. Your prayers are desired, and they are felt. Thank you for being part of our lives and for caring so much about us. Love to all.

1 comment:

  1. Thank you for sharing your story. I've just started reading but it's so helpful.