Book Excerpt

"Can there be any task more difficult for a child to face than having to parent your parent? Stepping in to care for a parent with Alzheimer’s, who will henceforth need every decision made for them? Weathering the inevitable and understandable anger and resentment, often focused on their caregiver? All while dealing with the fact that your parent will ultimately forget all about their lives and their loved ones. I had made the choice to take up that burden. What made it even more difficult for me was my relationship with my Father. He had been physically absent for much of my childhood and emotionally distant when with the family. Throughout my life, I felt that he didn’t know how to build a relationship with me. Nor did he seem to want to know who I was. At a crucial moment in my life, he had neglected my physical and emotional needs, leaving me alone dealing with a near-death illness. When I recovered, he never acknowledged I had an illness, never recognized that said illness might be making my life extremely difficult to lead, and withheld the financial or physical help I might have needed.
I was sacrificing precious time and energy caring for a man who not only hadn’t acknowledged me in the past, but due to the nature of his illness, was not able to recognize what I was doing for him in the present. If I wasn’t careful, I could completely disappear; a forgotten shadow able to feel nothing but resentment, bitterness, and anger. I was fortunate to have a therapist who repeatedly pulled me back into the present, reminding me why I was doing what I was doing. I knew that I didn’t want to miss anything during this long goodbye. I wanted a chance to connect with Dad before it was too late. She helped me work through old anger and resentment while living with Dad, and showed me that while he would never be able to go back and change the past, the exchange and the connections we were making now would give me rewards to carry into the future."

Personal Post

It's a very strange thing, seeing my father get more and more frail. The man came down with fewer than three colds in the entire time I was growing up; he never got sick, or at least never admitted it if he did. He was one of the healthiest people I knew, which made it a problem as he fell further and further into dementia. We knew that while his brain was unhealthy, in body he was like an Olympic athlete, and he could live forever. But over the last year or two, I've been taking him to the doctor more and more, usually for some sort of infection that started off small.

I got a call yesterday from a visiting nurse service asking for permission to go visit him to treat a boil on his leg; something his caregiver had told me about and for which Dad had taken a course of antibiotics. Apparently, the boil hasn't healed completely and the doctor wanted a nurse to assess it. I suppose a boil isn't that serious, but the fact that my father is growing more and more frail, falling victim to one infection after another, makes me thoughtful. At times over the last seven years, it seemed like he would live forever, but now I'm wondering sadly if his time is a lot shorter than I thought.

Hospice

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I had another visit with my hospice patient. It was earlier in the day and he seemed a little more energetic. This time the wife was leaving us to run errands; a family member would stop by in two hours to take over. She showed me where the emergency numbers were and the DNR orders. All hospice patients have Do Not Recussitate orders and I'm required to know where they are in case an ambulance needs to be called. The nature of hospice is Death with Dignity; no heroic measures are usually taken.

We decided to play chess again, and he roundly beat me the first game. The second game went a little longer, and I actually made a few moves on my own that he approved of! In the end, we called it a draw as he was chasing me around the board and was feeling tired. He did say, kindly, that I had the potential to be a good player if I really put my mind to it and practiced. I thought that was so nice and it encouraged me to keep playing! We discussed briefly the theory that women make worse chess players than men because they aren't as aggressive; but he was of the opinion that women ended up winning because they were safer and husbanded their resources better. Either way, I hope to practice on my own so I can give him a decent game without assistance!

Hospice

I have a new hospice patient, a lovely older gentleman. His wife and primary caregiver is still a little wary of the hospice system, but I paid them a visit last week and sat with him while she took a bath and had a little time to herself. I think he was a little irascible about the fact that he needed someone to watch him while she was still in the house, but he was very courteous. We played a game of chess together. I am not a great player, and am lucky if I can remember which way the players move, but he was very gracious about helping me out and telling me if I had made a bad move. In the end, we came to a draw so I guess I didn't do too badly. I'm not sure what he thought of the whole experience; a perfect stranger invading his home and forcing him to play bad chess when all he wanted to do was rest but they invited me back so I guess I did something right!

Hospice

I was visiting my hospice patient last week. When I first started seeing her, she was bedridden, slept a lot, and was receiving last rites from the priest. Now she seems to be doing much better, is up in her wheelchair part of the day, and can sit and talk with me. Granted, we talk about things I suspect she experienced in her past, or things she thinks she sees, but that's okay with me. Every now and then, however, I get a glimpse of the lucid personality that still lurks underneath the dementia and confusion. I was reading quietly to her, and she motioned with her hand to have me look up. When I did, she smiled at me, then something in her eyes shifted and looked almost sad. "Oh honey," she said, "I'm so tired... I'm so tired." I could tell this was the real woman talking to me, expressing what she was really feeling, and I felt for her. What must it be like to be so old and frail, unable to move much on your own, feeling the weight of the years and your infirmity weighing down on you? I touched her hand gently, and said, "It's okay, you can sleep now." And I watched her eyes flutter closed, one hand still picking gently, busily at her oxygen tube.

Excerpt

"The sheer volume of paper struck me every time. There was always more paper. The entire house felt like it was made of paper; walled, buttressed, and roofed with paper. Drifting against every wall in a storm of cellulose. Grubby stacks of newspapers, junk mail, useless prospectuses, and magazines supported the sagging walls. Old bills, bank statements, and ephemera spilled out of boxes and filing cabinets. Letters, contracts, and certifications filled up every drawer, every cabinet. Every scrap of paper that had ever entered the house remained, heaped and hoarded anywhere space was available.
It was not the first house I had ever emptied; a few years before, we had cleaned out my Grandmother’s house in a few weeks. Carrying over some of her belongings and papers to become part of the strata at our house. It’s hard to know how much a house can store, especially if the same family has lived there awhile. And you don’t realize that, of course, you have to also get rid of the bones: appliances, furniture and soft furnishings, everything. You have to strip it right down to the walls."

Excerpt

"Several years ago, standing on the edge of the Grand Canyon, I was amazed at the sheer beauty and majesty I saw before me. Taking in the colors of the rock, the many striated layers of ancient earth that made up the canyon walls, I was struck with feelings of awe and delight. Standing on the edge of the carpet in my father’s house, viewing the chaos and the layers of junk and paper, I was struck with similarly powerful, if slightly darker emotions. How in heaven’s name were we going to be able to make even a small dent in the huge mess that had taken over my childhood home?
Picture a big house, roughly 2700 square feet. Imagine the inside of the house as having layers of stuff, the geological strata that reminded me so forcibly of the Grand Canyon. The top layer, laid down the most recently, consisted of huge amounts of debris and recycling that Dad had accumulated over the years. Not quite at the point of finding bodies mashed flat and mummified between stacks of trash and paper, it was approaching critical mass.
Under that, the basics: furniture and curtains; house wares and food; clothing and carpeting. Below that rested years of accumulated tools, car and airplane parts, and toxic paint cans in the shop. Old books and my mother’s belongings, our old toys and things we’d left behind, Christmas decorations, ancient photo albums, and numerous boxes and full filing cabinets. Then, the accumulated years of papers and belongings of my parents; everything of mine and Big Sister’s that had been saved and stored; and whatever had made its way over when each of my grandparents had died."