I’m a fan of inspirational quotes or quotes of wisdom and I’ll share two of them (I don’t remember where I read either, so I’ll paraphrase). One said something like “when you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”. This quote takes me back to the Town Hall meeting I attended (and wrote about) several years ago where caring for Alz patients was discussed. The comment that stuck with me from that Town Hall referred to the difficulty in training health care professionals in how to deal with Alz when it presents itself differently in every case. As an untrained health care professional thrown into a caregiving role, what the hell do I know about caring for someone with Alzheimer’s with Marcia’s symptoms? I do what I do based on doctors suggestions, what I read, what I feel and what I have time to do. Marcia has several doctors (neurologist, oncologist, an orthopedic surgeon, and even physical therapists). And they don’t always agree on how to treat Alzheimer’s, cancer, spinal stenosis and arthritis together. Often one doctor thinks we should do something that one of the others says we should not. My medical training consisted of watching every episode of MASH at least five times, and most episodes of ER. This, of course, totally qualifies me to make decisions on surgery, medications and treatments. So I often do make the final decision. And I’ve made mistakes. I’ve failed.
The second quote says that I should be honored to be a caregiver, because I am the answer to someone’s prayers. While I believe that (and believe I have prepared my whole life for this role), I do NOT feel honored. I am burdened, stressed and alone. And I have failed. Often. Both quotes refer to the challenges associated with caregiving, and I know I am not alone in feeling inadequate in this role I’ve been forced to take on by a cruel and nasty disease.
So what is the connection between caregiving and baseball? I think the connection is the high rate of failure. Baseball “stars” get a hit 30% of the time. The other 70% of time, they do not. They “fail” to get on base and have calibrated success based on what others have done, not on always succeeding. Since Marcia got sick, I have tried as best I can to be a full time employee, the only parent to my kids, a caregiver to Marcia, a cook, accountant, housecleaner (hahahahah, our carpet throughout the house is one big drop cloth), husband, friend and I’m sure other roles as well.
I can’t say I’ve failed 70% of the time, but I have failed often. Have my kids received the parenting that two parent households give? They have not. Have I performed at work to the level required of my job? Nope. In fact, I recently lost my job and will no longer be working in a few months. Have I done what I need to for Marcia as fast and as thoroughly as she deserves? I wish I could say I have. I’ve not done things on the same timeline as some feel I should. Have I worked on my relationships with people I work with, went to school with, or have become close to over the years? I haven’t because I cannot.
In fact, I would probably give myself a grade no higher than a “C” in any area, though to copy the formats from my kids’ report cards, I would get high marks for effort. Yet in some ways I am that baseball superstar. Failing often, but in aggregate, I’m making the all-star team. And I’ve been able to accept my failings. Failures that others might see in any given area. Did I deserve to keep my job? No. My company had to pick the best people for the job and I wasn’t the best. Can I blame Alzheimer’s? I won’t travel and I don’t put in the same hours I once did, all because of Alzheimer’s, and others can and will. I’ve tried to keep work and personal life separate, but I’ve not succeeded. Have I frustrated friends and family by not getting home health aide sooner? I have. Have I made all the decisions others felt I should regarding Marcia’s care. Probably not. But I have made the best decisions with the information I had, in the time I was able to carve out.
I am the only one who could see all of these “lives” I’ve lived. And the truth is, I feel good about what I’ve prioritized. I feel good about my choices and decisions. I’ve wasted little time second guessing myself or worrying what others think of my “performance” in any given area. While I’m not at all satisfied that I’ve given my employers, kids, and Marcia all they deserve. I feel like I’ve performed 30 hours of work every day. As long as Marcia is getting good care and attention from me, as long as Riley and Ryan are happy and doing well socially and in school and I am there for them when they need me, I’m not failing. At least not in my eyes.