Perspectives: Grieving the living

Over the past few months it seems like my father's condition is getting noticeably more advanced. All of us are handling it in our own way but I think Hillary is taking it the hardest. She has always had a hard time accepting impending loss. Over the past two years she has changed her own life for the better by becoming a vegetarian and losing sixty pounds. Now, Hillary thinks she can not only slow dad's decline through diet but actually reverse his Alzheimer's. At the time of this writing, there is no known way to reverse Alzheimer's through diet or any other means. If there is a way through medication, it is still not available to the public.
I have personally begun changing certain aspects of my diet in order to postpone Alzheimer's onset should I be so unfortunate as to acquire this condition in future years. Things pop up all the time in the media...what to eat, what to avoid, what can speed up the disease and speculation on what slows it down. Personally I eat homemade salads everyday, kale, onions, fresh tomatoes and carrots are frequent ingredients. Although I am not vegetarian I eat very little meat. What I do eat is very lean. Chicken breasts are grilled or roasted, not fried. Fish  is made on the grill...never farmed, either, and I pay attention to mercury levels. All of these things are relatively easy to research on the web.

The most recent thing I am looking into is something Hillary and Paula both brought up. Apparently there is some new evidence that suggests that coconut oil can slow the progress of the disease. Now Hillary has added two enormous coconut oil capsules to his daily meds. There has been no notable difference so far but I will keep observing for any progress. Truthfully, I don't believe it is possible to reverse his condition. At this point I am more concerned about improving his quality of life, as I am sure we all are. I want whatever best serves his remaining happiness. Unfortunately, so often his happiness and what will prolong his life are completely at odds. The brilliant, creative part of him has long gone. It is a moral dilemma between health and happiness. Selfishly I want to hang onto Dad but intellectually I know he is almost 80, unable to fly or build airplanes, unmotivated to leave his house for anything other then taking Buddy out to his backyard. Hillary believes, as do I, that the Aricept isn't doing diddly squat. Even if Kale, coconut oil, tomatoes or any homeopathic remedy can slow the effects of this insidious disease, the moral question becomes: to what end? So he can look forward to Columbo re-runs, more grudging visits from increasingly weary caretakers, or more looping conversations leaving him vaguely aware of the humiliation of losing his intellectual prowess...his primary source of pride. I struggle with this every day. It is unfair and inhumane, but he is my dad and until I have a clear understanding of what is truly right for him or some genuine breakthrough in Alzheimer's treatment is available I will continue to try to make him smile and give him a sense that he is loved, and loved by many.

I believe I understand and sympathize with Hillary's pain. I think she carries tremendous guilt about Jenny's death. Hillary couldn't save Jenny although she tried for years over and over to dry her out and get her back on track. I wonder if she blames herself for that. Having personally discovered the health benefits of vegetarian diet she is convinced that that is how she will cure Dad. One time I had brought him a steak sandwich. She begged me to scrape off some of the meat. I only did it that one time. He didn't get past the first three bites. As far as he was concerned, a sandwich without meat was pointless. How could she possibly expect him to embrace this idea when he can hardly hold a reasonably complex conversation?

This is how she grieves. For Hillary, grieving is an endless maze of saving and fixing things. When it comes right down to it, we are all experiencing the stages of grief. We are grieving for those parts of Dad that disappear everyday...a death of sorts on a continuous basis. To grieve the living seems strange but it is so obvious that that is exactly what is happening. Hillary is in the bargaining phase...."If I can just feed him the right things...If I can make him like certain things...if I can get him to not like sweets, meat, fat, etc....maybe he will stay a little longer. Maybe I can cure him."

I went through the anger phase for quite a while. I resented the visits and how they cut into my time with my children. Being the only one of my family with two children in school it angered me that I was expected to carry exactly the same number of shifts as others. Even Kelly voiced her own anger at the situation. "Why do you have to be there on week nights? Don't they understand you have a family at home?" When Allison's school work started to suffer I blamed the schedule, and in effect Dad, for my inability to properly supervise her homework. Mike was unable to be home early in the evening with his wholesale store hours. Why not bring her along on visits? As I have mentioned in previous posts, Dad was beginning to ask her embarrassing questions about her physical development. Allie has a good heart and as such she is also very sensitive to comments about her physical appearance. I couldn't expose her to a repeated line of questioning likely to make her feel self conscious, no matter how well meaning Dad might be. Although her grades were good, her ADHD almost kept her from being promoted to the 6th grade because of her difficulty completing standardized tests.

Because of this struggle to insure she was promoted along with the rest of the class I almost threw in the towel. I prepared an email to Paula detailing the problems the schedule had created in the lives of my family and offering to give up any portion of my inheritance to pay for additional home care for Dad. After thinking about what I had written I sent a message to Tom asking him to read it and tell me what he thought. It took him a while to get back to me but when he did, he surprised me.
"Don't send this yet, Erin. Let's think about this. What is your main problem? Time with your kids, right?" he pressed.
"Exactly", I agreed. "My kids are paying the price because I'm never around to help them when they need me."
"Well....what about this", he suggested, "I want to fly my plane on weekends and Anne stays home with Casey on weeknights, so I'm pretty well covered. What if you trade your Monday and Wednesday shifts for my Thursday and Saturday shifts? That way you get time with your kids when it matters most and I get my flying time."
I thought about it. It really was a near perfect solution. Time with the kids would be available and there would be a nice long break in between my last shift and my next shift. I accepted his offer and am happy to say it is working out beautifully. It is fair to say that my stress level has decreased, involvement in my children's homework and activities has improved dramatically and my positive attitude is returning. A side effect is that I believe I have become more compassionate as a caretaker. For a while Dad's repeated questions were a source of constant aggravation. Once I was able to take a step back and not feel so suffocated I began to look at the bigger picture. Dad needs us so much and he is frightened. He doesn't want to die and if it's going to happen, this is the worst imaginable way from his point of view...having to witness his intellect slowly leaking away.

Recently I came to his house on a Saturday for a lunch visit. I had traded my evening shift for my nephew's lunch shift. I was pressed for time that day because I was matron of honor for a wedding and in charge of the bachelorette party that night. I had a couple of short hours to visit and then would need to cut out fast.

Usually when I walk into the house Dad greets me the same way. From his chair he sees me, throws out his arms with a bright smile and says "HEY! It's the LITTLE KID!!" and gives me a big hug and a kiss. This time was different...very different.

I walked in, greeted Buddy and walked to the TV room where Dad was sitting as usual, but he was sitting forward in his chair with a worried look on his face. Dad looked up as I entered  the room.
"Hi, Daddy...you okay?" I asked.
"Erin....?" he began.
This startled me. He had not called me by name in over a year. In fact, if he called me by name it was by one of my sisters names, never my own. I had been deemed "the little kid" or "wiseass".
I walked over and lowered myself into the chair beside him, placing my hand on his arm.
"What's wrong, Daddy?"
"Are my parents separated? I haven't seen them together in years", he said. I was thunderstruck.
"No, Dad, your parents never separated...How about we take a walk?" I suggested, trying to sort out in my mind how I would explain the last twenty years to him. He agreed to walk. It was, after all, a beautiful fall day. Dad's backyard is about half the size of a high school football field. We walked around  it twice as I explained that his father had developed prostate cancer about twenty years ago, how his mother never left his father's side. They never separated. I then related how his mother lived another ten years, into her early nineties but that by the time she passed she really didn't recognize anyone anymore. She was surrounded by her loved ones until the very end. Although he was very somber he took it extremely well. He only commented, "Wow...I don't have any memory at all of any of that."

We continued to walk and chat about the beautiful weather and how much Buddy was reveling in running through the leaves. Then Dad did something remarkable. As we walked he found a dead branch laying on the ground. It was about four feet long and water logged from the recent rain. Dad took great trouble to keep his balance as he bent to pick it up. I held his elbow to keep him from stumbling as he stood. He then shuffled over to the chain link fence with as much purpose as I had seen in him in quite some time and, holding one end of the branch, he swung it like an axe smashing it in half on the fence post. Dad looked at the remaining half in his hand and tossed it over the fence as well.
He had a strange little smile on his face as he shuffled back to me.
"I'm not ready to die yet," he said defiantly.
I smiled back, "That's awesome, Dad! We aren't ready for you to die either."
With that, we went back in and had lunch. Great visit. Enlightening day. I wouldn't trade it for the world.
 (to be continued)