I recently got a new job working in supported living group homes with MR/DD patients. I truly do love the job - I feel like I am really helping someone when I go to work.

However happy I am with my job, nothing changes the fact that this is the hardest work I have ever done. Not physically - the physical aspects of the job are basically limited to the sorts of cleaning and repair I would do at home. No, the hard part is mostly emotional.

Of the people I work with, the hardest one to deal with is probably Marsha, the 62 year old woman who is in the final stages of Alzheimer's disease.

When I first went to work at that house, Marsha did not really trust me - then again, she had never seen me before. After only a few visits to the house, Marsha decided she liked me. For a woman whom I've only heard say "No!" "Yeah, yeah" and "Oh, boy", her method of communication is usually tactile. Therefore, when Marsha wanted to tell me that she both liked and trusted me, she walked up to me, smiling, softly petted my arm, my neck, and my face. After that, I could feed her, give her the medications she needed, and put her to bed with very little problem. Even Marsha's cat, Sheba, began to stick to my ankles more often. (This cat doesn't normally even stay close to Marsha.)

There are often times I will come in to work and find shoes on the kitchen counter, couch pillows on Marsha's bed, the remote control placed in some odd place, etc. Marsha may have been failing mentally, but physically could still do quite a lot. That 'quite a lot' usually included putting anything she could in her room, under her bed.

Marsha hates getting her Depends changed, however. And, because she is an adult, changing her diaper is much harder than changing a baby's diaper. Normally Marsha kicks and pushes the person changing her away, much as a baby does - but with much more strength.

Within the last few days, Marsha has started to move more quickly downhill. She became very unsteady on her feet, falling backward as soon as I stood her up from the bed, chair, etc. She stopped 'hording' things in her room, stopped getting up altogether unless she is physically made to do so. Today at work, it became very apparent just how far the Alzheimer's has progressed. Marsha complained loudly about getting her diaper changed, but she did not fight at all. She has slept as much as we have been able to allow her to for 3 days now - this woman was normally awake at 3am every morning. And, Sheba stays very close by Marsha now. Sleeping in her bed and staying near her all day long.

The other staff member who was working with me today has known Marsha for some 10+ years. Today, while we were changing Marsha and she wasn't fighting us, the other staff member shook her head sadly and whispered, "The good Lord is going to ask her home soon." This staff member knew Marsha when she still cooked, did latch-work, colored, went shopping on her own, did her own laundry, used the bathroom independantly, etc. Consequently, the staff member as watched the entire downhill progression of the Alzheimer's, whereas I have only been working with Marsha for a short time.

Yet, it is I who want to cry when I think of how much this wonderfully sweet and sensitive woman has lost to the merciless march of time. It was I who felt righteous anger when told that Marsha's sister had come to pick her up one day and the brought her back the next, saying that she would never return to see Marsha again.

That doesn't make me mad any longer, as I understand now how hard it is to watch someone lose everything that is ever was or is a part of his/her personality. Now, it just makes me sad. The woman has so little left of herself, all she wants now is to not be left alone. She has been deserted by most of her own mind and bodily control, she is grasping at the last thing she has left: human companionship, even if she doesn't know or remember just who that companion is. It doesn't matter, as long as the person loves her, or at least cares about her.

It is a shame for the soul to be first to give way in this life, when thy body does not give way.
--Marcus Aurelius: Meditations Book 6, #29

My dad was coming down the stairs with the pages of spiral-bound notebook paper in his hands. He stopped two steps above the ground floor and looked at me. Or at least, he tried to look at me--the Graves' disease he also suffered from limited his strength, so that he always had a slight slouch and moved slowly and with a little trembling. He looked the same as I'd always remembered him, but there was a little less of him to look at now.

He needed those papers for the meeting, he said. I looked at them. He'd taken those pieces of paper from a notebook many days ago, folded neatly, and had put them on the dresser in the spare bedroom where he slept. I never knew what he wanted them there for. He was telling me about the clients and the meeting, and I knew that his mind was back at his career again, maybe five or ten or twenty or thirty years ago. My wife told me this had been happening on and off for days.

Something about the way Alzheimer's disease progresses, it seems, takes away the memories of when the victim is, letting them think that something that happened years ago actually took place a few hours earlier. Dad had worked in engineering and sales for a small manufacturing company in the Chicago suburbs for as long as I'd known him. He'd retired about five years ago. He just didn't remember that right now.

I listened patiently to what he was saying, but it was hard. He spoke so quietly now, and I didn't have the slightest idea in what context these papers existed for him. I looked up into his eyes as he talked. They looked permanently confused, as if he were desperate for anyone to give him an anchor for his mind. Everybody tells him what to do and when, these days, and all he can do is obey. He can't help that he's unable to recall where my mother is, or when my wife's day care children went home, or how to turn the shower on and off.

I took the papers from his hands and reminded him it was time to get ready for bed. It was a routine my mom had entrusted me with while she went on a much-deserved vacation for a couple of weeks: pajamas, brush teeth, one yellow pill with water, and leave the lamp on so that he can see if and when he gets up to go to the bathroom. Normally he'd get up two or three times a night, and I'd rely on the creaking of the door hinge to let me know so I could help him. Tonight, he'd get up five times, four of them to get ready for the meeting he was telling me about right now.

He watched me put the papers down on the other side of the wall, assuring him I'd take care of them. He met my eyes, not turning around yet. Then he said thank you, to me, for helping take care of him these past several days. He wanted me to know he appreciated it. I think I'll always remember looking up at him, there on the stairs, two steps above me where I could look up to him again for the first time in fifteen years and treasuring that moment of lucidity when I could pretend he was still the dad I always knew and respected, and loved.

He said it simply and directly. I told him "you're welcome." He looked at me a second longer, then down at the floor, and then told me a few more details about the meeting. I listened, and then encouraged him to turn around and head up to the spare bedroom to get changed for bed. He did so, carefully so he wouldn't lose his balance there on the stairs, and I followed.

It has been exhausting at times to watch over him these past ten days, for my wife even more than for myself. But her grandfather isn't that different from my dad--he had a stroke two years ago, and now relies on his children and grandchildren to move him from his bed to the living room to the bathroom every single day--and I know she understands. I now know exactly what my mom has to work with every day, and why my brother is so frustrated with watching it happen. And I wouldn't trade this time with him for anything, except possibly the chance to have my father back.

Reflections on Alzheimer's - The Paradox

I spent most of the first 30 years of my life looking forward to things. I looked forward to weekends, vacations, graduation, paychecks, as well as finally losing those few extra pounds. I assumed I would be happy once these events occurred, and didn’t notice how fleeting the happiness was, that even while each longed-for event occurred I was looking forward to the next. I never lived in the moment.

I was aware that I was extremely blessed. I never experienced a deep loss, say, of a parent or sibling or friend. But in my 30th year, while looking forward to the end of a long-awaited pregnancy and a career I was tired of, tragedy struck. My parents called on Memorial Day weekend of 1999 to deliver the crushing news: at 55, Mom’s recent air-headedness had been diagnosed as Alzheimer’s. In the next few days, I grieved profoundly, for the dark future, and for the happy times that would never be. When I came out of shock, however, something strange happened. I had wondered whether I would ever smile again, and whether we would cry all through the month we had planned to spend together, and yet that summer was the best of my life. There is a day, two months after diagnosis, written in my journal. My whole family was at the cottage and we had a beautiful, fun-filled day ending with homemade ice cream and a bonfire. “What a great day!” I wrote. This made no sense to me. How could I be happier after the tragedy than before? And people were assuming I was impatient and excited for my baby to come. I’d answer, “No, I’m comfortable and he’s no trouble in there.” What had happened to me? Why wasn’t I ticking off the days?

When people are struck by a tragedy which is quickly over, such as the loss of a family member in an accident, the pain is devastating and life-altering. They will treasure life more because it is so uncertain. They learn that the only thing they can be sure of is the precious present. But when they come up for air in a week or a month or a year, the slow process of healing can begin. Of course they will never really be over it, but the arrow leads mostly upwards. Not so for Alzheimer’s. After the initial shock, the arrow leads down for a long, long time. I expect every day to be a little worse than the last, for 10 years or more. I’m not saying I’d want to trade Alzheimer’s for another tragedy, just that a slow, inevitable decline adds an extra life-altering dimension. I started hoping my baby would take a long time, that Christmas wouldn’t come, that time wouldn’t pass. And I started grasping hold of every second, even a mundane one, to wring out every last drop of joy it contained. My goal was to experience each moment so fully that time would actually stand still. Then my Mom could live forever.

This outlook has made my experiences richer and therefore improved my life. The paradox is that my Mom’s devastating terminal illness, the sorrow of my soul, has improved my life in a way that no other experience could. Like everyone else, I saw Dead Poets Society and was touched when Robin Williams whispered “carpe diem,” seize the day. I thought about it sometimes, but it didn’t change my life. There are some lessons that can probably only be learned in that venerable institution, the School of Hard Knocks. I don’t expect this essay to change anyone’s life, either. But I hope it can convey that we often don’t know what’s best for ourselves, and that acceptance of tragedy can open other doors.

I’d like to end with these lines from a poem I wrote about sand tumbling through an hourglass. Though I could never have written it before Alzheimer’s entered my world, this simple refrain now echoes through my days.

This grain of sand is in my hand.
My fingers close upon it and impress it in my mind.

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