Brenda P. - Too Young
Carl was a brilliant man. He taught at the university for years and years and was frequently recognized by both students and colleagues for his excellent teaching and student rapport. He was a good father and husband on the home front, teaching our daughter and son life lessons that are still important to them. We loved to travel and to experience as much as we could pack into our days. Carl was quirky, too, and we loved him for that. That quirkiness led us off many a beaten path onto a better one less traveled and more explorable. We never even considered looking at this 50 year old man through an Alzheimer's lens.
When he started to become messy, it didn't bother me too much because I tend to be that way sometimes, too. However, when school things -- which I knew were very important to him -- began to be troublesome, there was a nagging feeling I couldn't quite identify. I began being engaged more and more in his work: helping to put together a course syllabus, grading test papers, helping to meet deadlines. Every now and then there'd be a scathing student end-of-course evaluation. Of course, that made me angry. How dare students think they knew enough to evaluate him so brutally? However, things didn't improve, and before I realized it I was fully involved in helping him prepare for classes. He seemed always to be disorganized or to have lost some critical something. He couldn't remember students' names, where he had placed papers to be graded, etc. We would fight about it at home. I was sure he was just being careless. He never really responded to my criticism.
It is so easy to look back now and see the markers, but at the time we all were blinded by our own assessments of him. His affection towards me, which had never been overt, wained to a point that I even wondered if there was "something going on." At some point, though, the light came on for me and I realized that there was something terribly wrong. He was repeating questions over and over, getting lost in places he knew well. Those student evaluations were now more full of scathing reports than complimentary ones. I started, without success, to suggest we see a doctor.
Five years later, when life had become so difficult that Carl realized it, too, we went to see the neurologist, who proceeded with a host of tests that would, utimately, give us a diagnosis of Alzheimer's Disease. I think we all were crushed, for the disease was not new to us: Carl's father had lived with it for 25 years, so we knew what we were in for.
Now, all these years later, we are still wrestling with this disease. Carl is in the final stages and is becoming more and more demanding in the care he requires. I have committed to keeping him at home as long as possible, and I have had great assistance from family and friends towards meeting this goal. It is maddening to see this insidious disease rob us of a brilliant man. It is infuriating to watch him as we also watch our new grandson, seeing how similar the two are in their interests and interactions, but knowing that soon the baby will leave the man behind.
It is sad, too, when the good day / bad day responsibility is mine, for I am emotionally mercurial. My good days are great days. My bad days are hellish. A few friends really understand this. Most people would like to think they understand it, but they don't. The lonesomeness I feel on a daily basis is paralyzing at times. I miss conversations, help around the house, spontaneity, affection, and being able to live without a detailed plan. We had planned to do so many things upon our retirement. None of those are going to happen -- a reality which is undeniable. I feel guilty when I dream about what I will do after he dies. I worry about what will happen to him if I should die first. I want our grandson to remember Papa as the brilliant, fun, family-loving man who he was.
I have always described myself as a person of faith. That, too, is something that I now question. I go through periods of great anger towards God, and I question how a loving God can allow this to happen, especially after so many have prayed so hard for some other option. Sadly, my church has offered me very little to hold onto during all this. It is just one more way that I feel alone.
So, why am I committed to stopping this disease? Simply put, I hate it. I hate the way it is so inconsiderate of its victims and their loved ones. I hate the way it robs its victims of their most precious gifts: their intellect, their ability to communicate and interact, their profession, and their very essence. If this disease was a waring nation, we would be up in arms, using our biggest and strongest artillery to fight it and stop it in its tracks. We would do whatever it took to destroy it.
As a caregiver, I have only a small artillery. It is family, humor, friends, occasional self-pampering, and hope. Those who stand with me, who assist me even when I don't know I need help, who cry with me and laugh with me, who spirit me away from the real world every now and then -- they're the reason that I can get up in the morning and slog or walk or run through a new day. I am thankful for them and know that if Carl were able to articulate it, he'd say they're everything we need.