Lions and Tigers and Bears, Oh, My

We have progressed to an interesting but frightening stage with this disease. The hallucinations and delusions have begun. I read about them but nothing has prepared me for this. It started rather slowly, a comment about visitors in the house. "Where did everyone go?" I would at first argue that there was never anyone here and then finally resorted to... "They have all gone home." It seemed to satisfy him.

Then he began imagining visits from people. "They were here. I sat and had a conversation with them. Two young men came in and tried to take my money from me. I fought them off."

I put the Christmas tree up. The next night he informed me. "What a beautiful tree. Adele did a beautiful job, don't you agree?" I responded, "Yes, she did." He then asked me, "So how long have you been working for the company?" I said I was retired. He smiled and said, "That's nice. I wish Adele would retire. "

He imagines people and creatures darting in and out of the house. "Did you see that boy/cat ...he ran out so fast."

A few nights ago, he awakened me, "There is an alligator in the bathroom." I had placed a nightlight in the bathroom to make it easier for him to navigate at night. Perhaps, the shadows startled him. He got up agitated. I reassured him. I turned on the bathroom light. He said, "It moved. Did you see it?" I became upset and insisted there couldn't possibly be an alligator in our bathroom. Then I realized logic no longer works and I remembered what I used to do when my grandchildren were afraid of creatures in their room at night. I opened the window and shooed the alligator out.

The doctor has prescribed medication that should calm these episodes down. But I find this disease both frustrating and with some perverted curiosity of mine, fascinating. His brain is obviously short circuiting but are these delusions part of dreams that have become his reality? My husband is slipping away but I am ever watchful of his mind's demise and I want to learn as much as I can so that somehow that knowledge will serve others. Meanwhile, I am prepared to battle alligators and the like when they invade our home.

Letting go of Normal

I had had a frustrating day. I was venting, complaining to my son about my husband's inability to understand simple instructions, being confused about the same thing over and over again. He should be able to pour himself a cup of coffee, he should know the difference between a roll of paper towels and toilet paper. He should.......and my son interrupted me. "Mom, you are expecting him to be normal, he isn't, he has Alzheimers. You need to let go of your expectations" The cold splash of his words hit me. After all this time of living with my husband and his slow descent into the middle stages of his dementia, I finally reached the turning point of coming to terms with the reality of this disease. Normal doesn't exist in our home anymore. I have let go. Normal is coming downstairs to have a morning cup of coffee and conversation with my husband. Now it is explaining everyday that we are married and I am the Adele that he refers to in the abstract. Normal is having a partner in marriage. Now it is having a full grown man becoming delusional, confused and more and more dependent on me for the most basic needs. Normal was being able to go to the grocery store alone or an art class. Now I cannot leave him for even several minutes for fear what he might do in his panic. I have let go of normal. Acceptance is part of dealing with this disease. As I look across the table at the man I love who is now the shell of the man I knew I realize each day will take him farther and farther away from me. Now I don't try to explain or rationalize, I fib. "When will we go home?" he asks. "We're spending the night here", I respond. "We will go home tomorrow." "Did you leave a note for Adele?" "Yes, I did." It has made life a little easier. We live in a strange world now, a world of twists and turns and sudden unexplained behaviors. There is no rhyme or reason to his strange questions and responses. And I know that nothing can stop this downward spiral. Nothing will bring him back to me. So I must learn to live with and accept this new relationship. This alien in the body of my husband. Yes, normal doesn't exist in our home anymore.

The Best of Times, the Worst of Times

I am winning the battles but losing the war. Slowly, each day, each new phase of this disease erodes my husband's vitality and memory. I have enrolled him now in an adult day care center for one day a week. A beginning and another step toward that dark abyss. They play music on Fridays. A volunteer band comes in and plays the "oldies". They dance, the ones that can, they play a word bingo, they enjoy forms of mind therapy. Sometimes, various volunteers come in to entertain, a Shakespeare performing group, an art teacher, etc.

I took him that first day; he, clutching my hand as a young child clutches his parent's hand on the first day of school, walking slowly, fearfully, anxious that I would abandon him, forget to pick him up at the proper time. I kissed him, gave him his cell phone, which he can no longer remember how to use, and assured him that I would be there at the exact time to pick him up. The volunteer cheerfully took his hand from mine and led him away. I walked quickly to the car. I broke down and wept for him, for me and for all our dreams that will never be realized. I am told this is good for him and for me. I am told this is the time I need for my self. I drove around for awhile trying to find where I should be for this "time" that I need. I felt lost, as lost as he was in that strange new place. I went to the mall, wandered around, not really engaged in anything. I drove down to the beach and sat in my car, watching the blue Pacific waves and thought he would have loved to be there with me, having a lunch on the sand. I know that we will evolve into this. I am told he will adapt and enjoy the activities and socialization and I will learn to appreciate my respites.

The time came to pick him up and I was ten minutes early. The volunteer brought him out to me. His face went from a perplexed stare to one of happy recognition. He straightened up and walked quickly to me, strong and confident as he used to be. He embraced me and hugged me long and tightly as if we hadn't seen each other in a long time. I didn't want to let go.

We chatted in the car. He enjoyed the day, the new friends, and the music but he was happy to see me. I lied and told him that I ran errands most of the day and had had a good day. I felt better. A bit of letting go on my part. We will be fine with this new arrangement.

We got home and as we got out of the car, he looked at me and asked, "Would you like to come in for awhile for a visit before you have to go home?"

I didn't know whether to laugh or cry.

A milestone of sorts

Today is my husband's birthday and a memorable day...for two reasons. The first, of course, is the celebration of his birth and his reasonably good health and ability to participate in that celebration. The second...a milestone, a turning point and a difficult decision for him. He decided not to renew his driver's license which was due today and in doing so has voluntarily given up driving altogether.

I am so proud of him and of course relieved. But I can only imagine the struggle and finally the courage to make this decision. His confusion and short term memory loss has increased and in those wonderful moments of cognition and rational thinking he is the pragmatic and ever philosophical and heroic man that I know. He has always been strongly independent and self sufficient. Now, he has given up a major part of his freedom, not out of fear but concern for others. He is willing to become dependent on me to drive him everywhere..to doctor's appointments, to the barbershop, to the golf course, etc. His reasoning was so he would not endanger anyone, lest he became unable to handle a vehicle.

As I have said before, he is amazing in his acceptance of life's trials and tribulations. He stills shows his love for his family in gentle, kind acceptance of this disease. He jokes occasionally about his "brain farts" as he calls them. His sense of humor and his wit are still intact. I lose patience all too often and he smiles gently or apologizes and he disarms me with his love.

This journey is not an easy one for us but he has really tried to make it easier in his own way for me. Some have said I have a lot of strength and courage to go through this and they say he is lucky to have me. I think I am the lucky one for having him.

Giving Thanks and Realities

We have just finished our Thanksgiving holiday with family. I was in Salt Lake for a week before the holiday to baby sit my five grandchildren while their parents took a well-deserved vacation. My stepson flew over from Prescott to spend the week with his father while I took my "respite". The children are all in school full time now and aside from the busy mornings of preparing breakfasts, getting them off to school on time and the chaos of coming home from school, hungry, homework laden, figuring out who needs to be at soccer practice, singing lessons, church activities, etc, the days were filled with solitude and lots of time for reflection.

While I enjoyed those silent hours, my connection to my husband and concerns about his well being were strong and ever present. Which leads to the question....does one ever really have a respite, relief from this disease and the care giving involved?

I flew home just before the holiday to prepare for my family to visit for Thanksgiving. I had a houseful as usual and enjoyed the chaos and cacophony of children playing and swimming in the pool and family engaged in conversation. All the while, observing my husband retreating, silently trying to follow all the activity, hiding his confusion and his disease as best as he could. He managed with wonderful patience to play pool with the kids, teaching them how to put "english" on the ball. Some of his skills are not forgotten. I was proud of him.

We had our family holiday and everyone left. The house is empty and I had the usual letdown. I started to think about Thanksgiving and how much work it had been and how tired I was and given the current circumstances with portfolios tanking, my husband's illness and the bleak future we face, I wondered what this Thanksgiving really meant, not only to us but to a whole nation.

This is what I concluded after my small "pity party". First of all, when I look into my husband's eyes and his warm and totally open response to my love and affection and his "I love you", I am thankful that despite the effects of his disease, he has not lost his ability to show his love. It has changed him, it has made him gentler, softer, kinder and open to love in the most basic way.

I am also grateful that I am able to be with my family at this time of year and connect with my extended family and know that they are all doing well despite the economic crisis. My house is empty but my heart is full. I didn't take one picture the whole time of their visit but I have memories of my six year old granddaughter jumping into the pool with wild abandon and swimming to the side as she learned to do this time around. I watched as my grown sons teased each other as they played video games like two little boys. I have memories of my daughter-in-law Hannah, making homemade dinner rolls with her little niece. I enjoyed shopping with the "girls" at the mall. My granddaughter must have tried on every pair of jeans in the store before settling on the perfect pair.

While the realities of our own struggles do not disappear in a day or a week or even a year, it seems important to me to consider the currency of love and family and the blessings of the moment. Nothing but our own resolve can get us through tough times and even now as I face an uncertain future with all its concerns, I remind myself that we cannot change the past and all we can do is live the moments that are given to us in the best way possible.

Mr. Fix-it

My dear husband has many attributes, clever businessman, quick wit, great golfer, even tempered and a wonderful friend and lover. However, there remains a skill that he has never quite mastered and now with Alzheimer's slowly robbing him of certain basic skills it has gotten worse....his ability to fix things.

This is not to say that he doesn't attempt to fix something, he does with great determination. The joke used to be....if anything needs repair, do not under any circumstances tell George. Plumbers, electricians would be called in secret before he would find out about the broken faucet or burned out outlet. Sometimes, they would be called in to repair his repairs.

Now fear strikes in my heart when I hear him say...."honey, I fixed it". Last night, as he was cleaning up after dinner (which he does lovingly for me) he came to me holding the sink faucet in hand. As he observed my look of horror, he reassured me...he would fix it. Not knowing how he managed to pull the faucet out of its place...."it came off in my hands" I tried to figure out the parts and pieces as we tried in vain to put it all back together. There were a couple of extra parts that didn't seem to fit.

Now I can pretty much figure out how things are put together, having had to be the one to read assembly instructions to my mate as we tag teamed in assembling various complicated storage units, kids toys and the like. But here I had some rubber parts that didn't look to be a part of this unit. He kept trying to fit the round pegs in the square hole. I kept asking again and again, where did you get this part? His confusion and distress kept getting worse. I looked around and discovered where he had gotten the extra parts....from the sink drain. I surmised that he had taken the drain apart in order to fix the faucet. I started to laugh. My Mister Fix-it was at it again.

The plumber has been called.

We, his family, call him the "duct tape king", which is his tool of choice. I have now hidden all the duct tape from him...sometimes it is a matter of survival.

Creating Space

One of the most difficult aspects of living with an Alzheimer's patient, particularly a spouse is defining anew the concept of space. My husband and I, from the beginning of our marriage, were two independent people who created our own spaces in our lives and our home. While being interdependent on one another, we respected our separateness allowing us to come together with renewed and ongoing interest in each other's lives. He developed an interest in art galleries, theatre, and movies (my world). I took up golf and learned to appreciate and enjoy Jazz music(his world). While he played golf with his cronies, I went on art related excursions with my friends. We both enjoy the theatre and our weekly movie date has been a tradition that we started early in our marriage and still enjoy doing. Our yearly trip to Carmel is where we share the common joy of exploring the art galleries, the Monterey Jazz Festival, and an occasional round of golf.

But as I said before, my space, his space is no longer separate, definable...it is our space. We are connected "at the hip" as they say. He cannot function independently very well now without me. He is still able to perform all the normal functions of daily living...he seems strong, fully cognizant, able to have conversations with a rational exchange of ideas....however, he seems to need me to be present at each moment. I am told that this is a normal symptom at this stage of this disease. He seems insecure, fearful, clinging at times. I go to my art class. "When will you return? What time? Will you stop anywhere else?" I try and reassure him. When I am upstairs in my studio, I know he will come up in a few minutes and ask, "What are you doing? When will you come downstairs? How long will you be?"

We go on walks together and he holds my hand tightly, afraid to let go. He now shadows me in the grocery store, when before he would go off and come back with some new item he wanted to try. At the book store where we would lose each other for hours exploring our own interests in books, he now just follows me, closely. I know his fear is losing track of where I am and getting lost.

My vital, independent, adventurer is now a fearful child. I am accustomed to this behavior in my small grandchildren but not in my husband. I steal small moments of privacy, when he naps or is distracted. I have moved my drafting table to the family room so that I can paint while he watches television. I am now trying to create a world, a space that comforts him as well as allowing me to enjoy the time we have together without losing my own space.