Why Am I So Happy With My Alzheimer’s?

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On the bus to Philadelphia a month or so ago, the battery of the used iPhone I had purchased a number of weeks previously failed, so I bought a new battery over the Internet and tried to install it.

Following one set of instructions, I tried to open the phone but became impatient with my inability. I ended up breaking it just trying to get it open.

I'm still not sure whether the Alzheimer's caused it or not. More significant, however, is that my impatience led me to try to force it. Ordinarily, I think I would have just stopped and taken it in for a professional installation.

I then bought another used phone over the Internet but within weeks this battery needed replacing, too. (Apparently the iPhone 3G is notorious for a short battery life.)

I decided to try—very carefully this time—to install the new battery again.

I looked up a different set of instructions, which advertised the task as relatively simple for anyone with a little experience. I enjoy being able to do little tasks like this, especially when they save you $30 or so. This time, though, I read the directions through thoroughly ahead of time. They were very clear but complicated.

After reading through about 23 steps and eight different electronic connections that would have to be carefully disconnected (and the battery isn't even out, yet), I decided I wouldn't chance it.

Under other circumstances, I would have considered it a challenge and taken it on. But I know that somewhere in the middle of those 23 steps or beyond, I would have lost my way. So I'll pay the $30.

Marja and I are getting comfortable talking about the disease and our future … and even joking about it. Unfortunately, I can't remember examples. I've bought a little pocket notebook that I'm beginning to carry around for jotting things like that down.

I'm on the bus up to Philly to see Karin and then will leave tomorrow morning for Boston to spend a few days with my sister Lois and her husband Fred. I haven't told her about the Alzheimer's and I wanted to do it face-to-face. Our last attempt to get together was short-circuited by Hurricane Sandy.

I'm not sure what to expect. I think I'm looking forward to it as a way of tightening the relationship with Lois.

It sometimes crosses my mind that perhaps I'm taking the Alzheimer's too seriously by needing to travel 800 miles and take five days.

I also worry that making the disease so important in relationships is just narcissistic: Lots of people have Alzheimer's, but you don't hear them trumpeting about it.

I'm even trying to figure out some way of visiting my other sister Laurie and her husband Paul on our way back from our Christmas in Napa. It would involve getting off in Chicago and taking the bus to Minneapolis.

I realize that things will almost certainly change, but these few months have made me happier and more content than I have been in a long while. Gone is the sense that I should be doing more. It's okay to take some time off, to give up some projects that don't seem appropriate.

I think what I find most freeing, though, is that I don't feel the same necessity to live in the future, fearing the judgment that will come if I don't do it right. I have felt much better, for instance, just responding to the tasks that come before me, rather than having a set idea of what I should be doing ahead of time.

Relationships are closer, especially with people whom I've told. Before our leadership team meeting on Sunday, Kent asked how I was. It was not just a greeting. He wanted to know how things were going for me in the light of the disease. Dawn Longenecker wants to get together … just to talk. I'm aware of the gift of being in the Eighth Day community, even among those who don't know my diagnosis yet; I feel closeness, support, and love that have always, I'm sure, been there.

When I talk with my children, it's deeper. It feels sometimes like I'm in a different, better world.

Amazing!

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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2 Comments

Thanks, Dr. Hilfiker, for sharing your thoughts. My psychiatrist has given me a preliminary diagnosis of early onset dementia. I'm going to begin a lof of neuro psych testing tomorrow. I'm also currently trying to help my 84 year-old mother care for my gravely ill father, who is 85 and in in-home hospice care. I haven't told anyone in my family because I don't think they could handle dealing with my father and my news. I'm sure they've noticed some of the symptoms I exhibit, but I think they chalk it up to the stress of helping my parents. My symptoms of dementia began long before the circumstances with my parents occurred.

I'm thankful for my ability to maintain insight up to this point and the ability to write. I can't do much else. I'm getting lost and disoriented while driving and can't do simple things like work a vacume cleaner or write a grocery list. I can't follow a recipe and cooking is too overwhelming. When I do try to cook tge food doesn't "come out right". I'm getting along well with my smartphone so far and am still working. Doing dishes is difficult, getting dressed is difficult. My short term memory is pretty much shot, but fortunately I haven't yet begun to forget who people are. I even have difficulty swallowing sometimes. It seems that the symptoms have really escalated since last autumn. If it continues at the pace of the last several months, I will be fairly incapacitated soon. I am really scared about it--but like I said before, kind of relieved as well.

It will definitely be a relief to get a diagnosis. I think having dementia will be much harder on my family and friends than it will be on me. I'm trying to figure out when I and my family will know it's time for me to sign off. I am a firm believer in assisted suicide and have already decided for myself that when I forget who my son is...that's when it's time for me to go.
Thank you, Dr. Hilfiker for your candor in writing about your journey. I find your approach refreshing and encouraging for those who will one day have cognitive issues that will be some form of dementia. Allowing yourself to be free of daily expectations is great --- please keep writing for as long as you can. Dotty