My Alzheimer's Journal #23

Alzheimer's is so weird. When I wake in the morning I have no idea what day it is and I have to look at my cell phone or ask Connie to find out. And I hardly ever remember what events or activities are scheduled for that day. But the slightest little thing can spark a long-ago memory.

Just yesterday when I grabbed my towel as I was getting out of the shower I had a flashback to when I was a kid. Mom and Dad took us to the pool to go swimming. They both had beach towels but my brother and I used old bath towels. During the rest period, when the lifeguards made everyone get out of the pool for15 minutes, Mom noticed that my toes were over the end of my towel and she exclaimed that I was getting so big I would need my own beach towel. I was thrilled to hear that. I felt so grown up. And I couldn't wait to lord it over my brother that I had a real beach towel and he was still using a "baby" towel. Unfortunately for my devious plans, our mother felt compelled to buy each of us a beach towel. I never really understood why my parents felt the need to make more babies when they had achieved perfection the first time. Lol.

Anyway, I'm kind of thrilled that today I can remember an epiphany from yesterday.

My Alzheimer's Journal #22

“The return from your work must be the satisfaction which that work brings you and the world's need of that work. With this, life is heaven, or as near heaven as you can get. Without this — with work which you despise, which bores you, and which the world does not need — this life is hell.”
― W.E.B. Du Bois

My "retirement" jobs were preaching for pastors who were out of town and officiating weddings for the God Squad. Both brought me a lot of satisfaction, even joy. Now that I'm no longer able to do either, I feel "jobless." And that too is a kind of hell. Who am I now? What am I?

My Alzheimer's Journal #20

I asked Connie if my constantly asking her questions like, "Where are we going," or "What are we doing today," when she has already told me several times is annoying or frustrating to her. She admitted that it was. That makes me sad. Truly, I would much rather God take me sooner than to be an exasperation to Connie as long as Mom was to Dad with her Alzheimer's.  

My Alzheimer's Journal #19

I preached my final sermon at St. Luke this past Sunday. It feels really weird not to be working on an upcoming sermon. Even though I'm retired I still preached about a dozen times a year at St. Luke and Epiphany Lutheran churches. Most people at St. Luke call me Pastor Paul. I guess now I'm just Paul. And that feels like I've lost something. 

My Alzheimer's Journal #18

It is becoming increasingly hard for me to write a sermon. This past Sunday I preached my second to last sermon. Next Sunday will be the last. Last month, when I realized I needed to stop preaching and stop officiating weddings, I felt very sad. But after messing up the liturgy several times Sunday and stumbling over words a few times during the sermon, I told Connie after the service that though I was sad I can no longer preach, I was glad that this Sunday would be my last preaching assignment. My ego makes me want to lead a flawless worship experience and knowing that is not likely to happen is very stress-inducing.

People have been very kind and understanding and everyone who spoke to me after Sunday's service seemed to have been challenged by my message, but it took so long to pull it together. I finally had to resort to words I found in other pastors' sermons on the internet.

That's all for today.

My Alzheimer's Journal #17

It's been a good week. We got to spend real quality time with all nine of the grandchildren who live here in the Mid-South. Yesterday we went to Grandparent's Day at the Delta School in Wilson, Arkansas. We had a wonderful time and, except for the fact that I can't drive anymore, I hardly thought about my Alzheimer's at all. 

My Alzheimer's Journal #16

Here are some more inspirational yet challenging words from Fr. Henri Nouwen on the subject of aging and dying that brought me a measure of comfort:

Our Weakness Blesses Others

Our weakness and old age call people to surround us and support us. By not resisting weakness and by gratefully receiving another’s care we call forth community and provide our caregivers an opportunity to give their own gifts of compassion, care, love, and service. As we are given into their hands, others are blessed and enriched by caring for us. Our weakness bears fruit in their lives. And dying is our ultimate vulnerability. Instead of looking at the weakness of old age as simply the experience of loss after loss, we can choose it as a passage to emptiness where our hearts have room to be filled with the Spirit of Love overflowing. It is ultimate weakness but it is also potentially the greatest moment of our fruitfulness. --Henri Nouwen

Truly I pray that my increasing cognitive and physical weakness will bear fruit in Connie's life, and not just be a burden.

My Alzheimer's Journal #15

Because I can no longer drive, and because I have so much trouble understanding what to others would be simple directions, and because I've had to give up officiating at weddings, teaching Sunday School, and preaching, I am constantly aware of my Alzheimer's. So I long for distractions that take my mind off of it. A couple of times a week my daughter-in-law, Brandy, brings her kids over to read to me. After they are each done, I read to them. It's a very special time for me. And lately, Connie and I have been watching the Ken Burns film series on the history of country music. It has been so well done that for two hours each night I never have a thought about my Alzheimer's.

But there are times when being reminded of it is ok. This morning my old friend Sam Specht called just to let me know he was thinking about me. He asked me some questions about my situation but it was done in such a loving way and full of concern and empathy that I didn't mind it so much.

But now, in a few minutes, Connie and I are going to leave to get to an event with several of our church friends, and I and all of them will be reminded of it because Connie will be the one driving.

That is all for now.

My Alzheimer's Journal #14

I posted the words below on Facebook and Liker today in honor of -- perhaps because of our ages -- too many friends of mine who are facing death.

Henri Nouwen was a Dutch Catholic priest who taught at both Harvard and Yale. But his desire to live more like Jesus made him leave academia to pursue what he called Christlike "Downward Mobility. First, he worked and lived among the poorest of the poor in Latin America. Later he joined the work of the L'Arche Daybreak Community in Canada. Though he died suddenly on this day in 1996, He knew his health was failing when he wrote these words below. They speak to me. I hope they also speak to several Facebook friends I have who are living and dying with cancer, AIDS, MS, Alzheimer's or other catastrophic illnesses. I pray we will all both live and die accordingly. The Peace of God be with you all. Here are Nouwen's words:

The Most Important Choice:
If I die with much anger and bitterness, I will leave my family and friends behind in confusion, guilt, shame, or weakness. When I felt my death approaching, I suddenly realized how much I could influence the hearts of those whom I would leave behind. If I could truly say that I was grateful for what I had lived, eager to forgive and be forgiven, full of hope that those who loved me would continue their lives of joy and peace, and confident that Jesus who calls me would guide all who somehow belonged to my life—if I could do that—I would, in the hour of my death, reveal more true spiritual freedom than I had been able to reveal during all the years of my life. I realize on a very deep level that dying is the most important act of living. It involves a choice to bind others with guilt or to set them free with gratitude.

My Alzheimer's Journal #13

I don't know why I can write better than I can talk. Maybe because I have more time to think through what I want to say? Talking is hard because sometimes I can't get the words I want to say to come out.

Yesterday was a bad day. When I went to make dinner I could not find the butter or the coffee. I searched all over the fridge and the coffee cupboard to no avail. Finally, I told Connie I could not find them. She came in and found I had put the butter in the cupboard where we keep the bread and peanut butter and I have put the coffee in the pantry with the canned veggies. Several times in recent weeks when I went back into the kitchen to clean up after dinner, I found that I had forgotten to turn the burner off on the stovetop. And one time recently I found I had left a burner on when I went into the kitchen to turn out lights just before bedtime. Alzheimer's is downright dangerous. I told Connie she needed to survey the kitchen each night after I finished cleaning up.

Also yesterday, my brother treated us to lunch at a new restaurant to celebrate Connie's birthday.  The restaurant was so noisy I could not make out most of the conversation. My hearing aids don't do much good in large noisy crowds. Dealing with deafness and Alzheimer's at the same time is like a double whammy. When Connie asks me if I remembered something, I never know if I forgot because of the Alzheimer's or because I just didn't hear it the first time.

Well, enough complaining. It's a gorgeous day outside. A friend is coming over soon the do a Bible study with Connie and then we are going out to take food to a woman who just had a baby. After that, I think we talked about going to IKEA for our walk and lunch. 

That is all.