When Ken and I married we were everything to one another: husband and wife, soul mates, lovers and best friends. At first we had eyes for no others and space for only the two of us, but eventually the oneness and passion took its proper place in life and we became, once again, part of the real world. We were already children of our parents and a sister and brother to our siblings. We had aunts, uncles, cousins and other friendships, and as we grew into the big, roomy shoes of married adults we took on new titles becoming not only what we were already, but more in being the kind of people we had chosen to be: a man and a woman who were quite capable of family devotion, preparing for earnest parenthood, worthy neighbors, and good friends to many. We also became, as the scriptures tell us, a strong, “equally yoked” team. Well, as equally yoked as one can be married to the world’s number one procrastinator. However, we were still everything to each other as we had been in the beginning. Everything, that is, until more than a half century later when the demon Alzheimer’s introduced two new men into my life; both of whom I could readily do without.
This afternoon was filled with phone calls and company, which is always good for Ken – and me. Having been a social person all of his life, Ken is happy to have someone to talk with even if he doesn’t think he knows them. Furthermore, he still knows how to “fake” it. A young visitor might ask, “Hi, Grandpa. Remember me?” Ken will smile and answer, “Can’t recall the name, but I recognize the face.” He doesn’t, but the encounter gets his brain working and makes a small – or tall — guest happy.
Having visitors makes me happy as well because that stimulation seems to keep away his two other personalities. My husband can become any one of three different people – or I suppose it’s better to say three different personalities, one of whom is the man I married with a diseased mind. The mood or personality is a change that can come over him at any time and is part of Alzheimer’s. I have named the first intruder Mr. Hyde. While this personality can be rude, disagreeable, mean, and a bit combative, he is not violent and murderous as was the character created in the turn-of-the-century book, Dr. Jekyl and Mr. Hyde. Nevertheless, because he can be unpredictable I tagged him Mr. Hyde as a point of identification, and because it seemed to fit this stranger with who I am often pitted.
Mr. Hyde admits to being married, but not to me, and has a family, but is never discussed. He will often look at me and ask, “Where is my wife?” or “Where’s the boss?” (The boss, of course, is me). He sees me a someone very young who is still going to school and needs to call her parents to come and pick her up when it’s time to go home. That concern is part of Ken’s deep-rooted personality as he worries whenever he knows a woman is out alone in the dark of night.
The second personality is Buddy (who is about 12). Buddy owns this building (which he claims as the house where he was born), having received it as a gift from his father and mother who still live here, but are presently away. Buddy tells me he is not married, has no children and no additional family other than his sister, Loretta, who is also away. As Buddy, he can become very strong and quick in movement, and he too can become combative when confronted about anything, especially his rights as a property owner. He sees me as an intrusive stranger who has no right to be here and wants me gone from the house. He is very protective of it, almost as though he has been left in charge while his parents are away, and takes his assignment very seriously.
Mr. Hyde was the first to arrive, but both of these newcomers in my life can make things very unpleasant with their presence. Both of them love to argue, even though most of the time they remain cordial unless they are provoked which can be real or imagined. However, it doesn’t take much to set them off. I dislike the two intensely, but I believe they cling to Ken’s basic upbringing about respecting women. I can just hear his mother say, “Buddy, you must always remember this: You are never, never to hit a woman – not for any reason!”
As strong as these personalities are neither of them seems to appear when there is company in the house, and that’s a good thing. Meanwhile, even though I detest both I am prepared for Mr. Hyde and Buddy to be the other men in my life for as long as they decide to stay. The mood swings must be their calling card and if I could I would show them the door.
CHRISTMAS AS USUAL
Earlier this month I thought about not putting up the Christmas tree. It wasn’t that I was feeling “Bah Humbug,” it’s just that every so often I ask myself, “Why?” Finding a good answer such as “Because” which was one of my kids favorite excuses I decided to reconsider. Ken’s decline is measured by birthdays, anniversaries and holidays, and as the year is coming to an end I have noticed he isn’t much interested in anything. I also knew that if I didn’t put it up near the first of December it wouldn’t get up at all, so I brought down all of the boxes including the ones holding the tree itself. “Do you want some help?” he asked. “Of course,” I replied handing him some artificial limbs.
“A plastic tree?” my family had complained. After years of going to the tree lots and even traveling to the mountains where we picked out and cut our own from a Christmas tree farm, we decided, after the last child left home, to buy an artificial one. Fake and plastic though it was, it did solve a lot of problems (and created some new ones such as storage), but the advantage defeated the disadvantage, and when it’s decorated it is beautiful. The only thing lacking was the fragrance from a fresh tree.
“Spread out the branches and fluff them a bit,” I instructed. Ken did very well that night with his small task, and as I began the tree assembly I also placed strands of tiny white lights on each layer. Opening more boxes filled with decorations I continued the process of bringing the symbols of Christmas into the family room. It’s always fun to pull out each carefully packed ornament. A half century-plus of picking up a few each year until the tree is now filled with an array of babbles, bangles and even bright shinny beads as well as small birds and stuffed animals dangling from a string. It seemed as I held each one memories flooded back telling me where we bought it and why — good memories. Plugging in the lights Ken looked at the tree with a degree of puzzlement and said, “It looks nice — what’s it for?”
Every so often the meaning of Christmas pops into his mind, but for the most part the tree, the tradition, even the birth of Jesus Christ is meaningless to him. That’s when I have to remind myself that what I often do for “us,” I am also doing for me. Caregivers need to be pampered as well as the patient. Ken’s appreciation for all of this fuss can be, and is, whatever he can manage. Seeing Christmas in “place” is for me.
In addition, I was certain our small progeny would appreciate it, and they did. Dylan came to me with wide eyes and said, “Your Christmas tree is pretty, Grandma.” I said, “Thank you, Dylan. I’m glad you like it.” So for all of us the work involved in decorating is well worth the effort.
Last year, remembering the exchange of gifts Ken worried that he hadn’t had a chance to buy me a anything. With AD memories come and go, and he recalled again that he hadn’t bought a gift for me. To relieve his troubled heart we went shopping where I picked out a few things for him to give me; took them home, where they were wrapped and placed under the tree. He was pleased. A few days later, our son Keith decided to take his father shopping one more time. That way, he reasoned, I would have a mystery present under the tree. I gave Keith several options to choose from, and I was surprised when I opened my package containing a new black sweater, which I needed. The fun part of gifts for me is buying for family, which I do all year long.
Today is Sunday and we went to church for Christmas services — hearing, once again, the passage from Luke — listening to songs by the children and choir, and joining the congregation singing “I Heard The Bells On Christmas Day.” It was lovely.
It’s blustry outside, looking every bit like winter with soggy leaves covering lawns and lights dangling from the roofs of many homes. California needs the rain so I am grateful for it and for the snow storms in the mountains. It’s beginning to feel, and look, like Christmas. When we got home I turned on the tree lights, started a fire in the fireplace and within a few minutes it was warm and cozy. I sat next to Ken, reached for his hand and settled in for as long as he was willing. Right now it’s picture perfect and the room is filled with holiday magic. Everything looking so festive is a cherished reminder of the reason for the season: for the simple, yet profound, truths and promises that have been given through the birth of Jesus Christ. Sparkling in the shadows of firelight, I’m doubly happy the tree is there, for the two of us together, and for where we are in the moment — that’s how you live with Alzheimer’s disease — and during this particular moment Christmas is bringing hope to a tired and troubled world, and to me. 2008
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