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.