My Alzheimer's Journal #26

I'm not me anymore. Sad.

My Alzheimer's Journal #25

It's getting harder and harder for me to speak and write. Writing is easier than talking, but even here I sometimes spend 30 minutes or more just straining for the mot juste to complete a thought. In fact, I just did that here.

My Alzheimer's Journal #24

For the past several years I have felt hot even when everyone else in the room feels cold. My doctor says it's because my MS plaques have messed up my hypothalamus. For most of my life, I have awoken between 4:30 and 5:30 a.m. without the aid of an alarm clock. But for the last week or so I've slept until 6:30 or 7:00 a.m. I don't know if that has something to do with my MS or my Alzheimer's. I do know that I don't like it. I feel like I've wasted the morning away. And even with the extra sleep, I still feel tired all the time. 

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.

My Alzheimer's Journal #12

Today is Connie's birthday. Truly, I don't know what I would do without her. I'm sure it must be discouraging to her to answer a question I've asked a few minutes or hours earlier but have forgotten I even asked the question, but less know what she told me. But she always answers cheerfully. And she reminds me that last year on this date she had knee replacement surgery and I waited on her hand and foot, often helping her out of bed to the bathroom, bringing her ice packs to reduce the swelling, etc.

I make breakfast every morning and dinner every night except when we have company, then Connie cooks. But preparing meals is getting harder for me. I forget to tell Connie things we're out of so when I go to cook I don't have the proper ingredients. Today I was going to make her pancakes and bacon for breakfast but we were out of bacon and sausage both. So I went to McDonald's. Thought I had made the coffee before I left so I didn't get any there, only to find out when I returned that I had forgotten to make it. And it is getting harder and harder for me to cook. I keep looking at the stove or countertop or refrigerator wondering why I there and what I'm supposed to do next.

This morning I'm going to spend time reading with two of our granddaughters, then Connie and I are going to lunch with some friends from church to celebrate Connie's B-day.  So it should be a fun day. I'm looking forward to it.

That's all for today.

My Alzheimer's Journal #11

Yesterday I told my Sunday School class that after the three sermons I'm scheduled to preach in October and November, I'm going to have to stop preaching. It is just getting too hard to write a sermon. And today, for the first time, I let all of my Facebook and Liker friends know about my Alzheimer's with the following post:

I was diagnosed with MS when I was 38 and with Alzheimer's two years ago. As the Alzheimer's continues to ravish my brain, and the MS continues to make my legs more and more uncoordinated, I totally get the last sentence in Nouwen's first paragraph. I have spoken it to Connie and Pastor Cliff on several occasions. Please pray with me that as I continue to decline, I'll do a better job of living the second paragraph than the first.

Preparing for Death
Some people say they are afraid of death. Others say they are not. But most people are quite afraid of dying. The slow deterioration of mind and body, the pains of a growing cancer, the ravaging effects of AIDS, becoming a burden for your friends, losing control of your movements, being talked about or spoken to with half-truths, forgetting recent events and the names of visitors—all of that and much more is what we really fear. It’s not surprising that we sometimes say: “I hope it doesn’t last long. I hope I will die through a sudden heart attack and not after a long, painful illness."

But, whatever we think or hope, the way we will die is unpredictable and our worries about it quite fruitless. Still, we need to be prepared. Preparing ourselves for our deaths is the most important task of life, at least when we believe that death is not the total dissolution of our identity but the way to its fullest revelation. Death, as Jesus speaks about it, is that moment in which total defeat and total victory are one. The cross on which Jesus died is the sign of this oneness of defeat and victory. Jesus speaks about his death as being “lifted up” ()ohn 12:32-33).--Henri J. M. Nouwen 

My Alzheimer's Journal #10

I officiated at my last wedding yesterday. I forgot to tell the audience that the families of the bride and groom were supposed to remain for pictures when I dismissed the crowd. Felt like an idiot when the mother of the bride finally told me what I had done. Feeling very sad that I messed up at what I knew would be my last wedding.

That is all for today.

My Alzheimer's Journal #9

I'm feeling very depressed. A month ago I gave up teaching Sunday School because it took me 8 to 10 hours to prepare a lesson. And in class when everyone is talking I get confused and my wife tells me I don't respond appropriately to the members' comments or questions.

Then yesterday I had to tell my friend and mentor, Father Ken, that I can no longer do weddings for the God Squad, including the ones in just a few weeks that I told him earlier I thought I could still do. I no that puts a burden on him and I hate that because the God Squad has been so good to me over the past 18 years.

And I now realize that I'm going to have to tell Pastor Cliff that I can no longer preach for him when he is away.  It takes me up to 20 hours to write a sermon. It used to only take half that time. And I've been getting mixed up when I deliver the sermon. Connie tells me she doesn't think people notice yet, the just think I'm pausing for dramatic effect. But I notice. And I'm sure like everything else, it will get worse as time goes by. I have two sermons left to preach this year and thankfully I have them all written. But my last sermon in October will be my swan song.

All of these things I'm having to give up are things that defined me as a person. As I told Connie last night. I feel useless. And I hate that.

That's all for now.

My Alzheimer's Journal #8

A friend asked me a few weeks ago what my symptoms where. He wanted to know how I suspected I had Alzheimer's before I went to the doctor. So I told him. When I'm standing at the kitchen counter fixing dinner and realize I need something from the refrigerator, I walk over to the fridge and open the door. Then I stare into the fridge trying to remember why I opened the door. When I'm in the bathroom getting ready for the day, it takes me forever because I'm constantly trying to remember if I'm standing at the sink because in need to apply deodorant, or shave, or brush my teeth. I often walk out without doing at least one of those. And when I wake up in the morning, I usually have no idea what day it and I have to look at my phone to see what the date is.

My friend, trying I think to console me, said, "But people our age often do those things." I responded, "You don't understand. I don't do those things often, I do them every damn time."

Enough for today.

My Alzheimer's Journal #7

Getting diagnosed with Multiple Sclerosis at age 38 was a bummer. Finding out my memory problems are the result of the onset of Alzheimer's was much worse. But last Friday I met a totally blind six to eight-year-old boy at St. Jude's Children's Hospital was balding from his chemo treatments and I decided I need to reflect a bit more on my many blessings.

I married well. My wonderful wife has stood by me through thick and thin and I love her more than words can express. We have three wonderful sons whom we adore. We also very much love our daughters-in-law, and we have been blessed with thirteen grandchildren who, like the kids in Lake Wobegone, are all above average.

I have enjoyed every job I've had and, for the most part, have had great bosses, colleagues, and mentors. Though I've had to cut back on things I used to enjoy like driving and officiating at weddings, I'm thankful that I'm still able to preach occasionally.

Connie and I love our doctor who is both a gerontologist and an intern. She is the doctor who diagnosed my Alzheimer's and unlike any other doctor we've ever had, I sure she would recognize us if she saw us outside of her office. She remembers things we tell her about our children and grandkids and she doesn't seem to rush through her time with us when we are in her office.

I'm thankful for our church. We get so many positive affirmations there. Though we could do better, I'm glad we worship in a multicultural church that seeks to serve "the least of these."

That's enough for now.

My Alzheimer's Journal #6

Don't have time to write much this morning. But just wanted to say that several people have asked me if my diagnosis of Alzheimer's has shaken my faith. As a pastor, I can understand the question because I have ministered to people whose faith was indeed shaken by a medical diagnosis.

But way back when I was 38 and first learned I had Multiple Sclerosis I actually felt my faith strengthened, and the same has happened now with my Alzheimer's diagnosis. Maybe the following quote will help explain it: 

"Jesus came to bring good news to the poor; not to those who serve the poor! I think we can only truly experience the presence of God, meet Jesus, receive the good news, in and through our own poverty, because the kingdom of God belongs to the poor, the poor in spirit, the poor who are crying out for love." -- Jean Vanier, founder of the L'Arche communities.

I found this quote in today's reading in "Common Prayer: A Liturgy for Ordinary Radicals>" After the quote above was this prayer:

"Lord, even the seraphim and cherubim hide their faces in your presence as they declare your praise. Help us mere mortals to humbly dethrone ourselves and bow before you, that in our weakness we might know your good news and forever sing your glory. Amen." 

Though I do complain about my memory loss to my wife, I somehow feel closer to God than ever before. Even with my lousy voice, I still sing God's glory.

My Alzheimer's Journal #5

Alzheimer's is so weird. As I mentioned in a previous post I could not remember my oldest grandchild's name the other day. And, especially in the evening, I often get confused when Connie or someone else is trying to explain something to me. That happened last night, but then, just 30 minutes later I was able to complete a crossword puzzle in record time. Truly I don't understand how that's possible.

I can tell that at times Connie gets exasperated or frustrated with me when I forget something important or don't understand what she is trying to tell me. And that pains me. I can remember things that happened long ago. I remember our best friends at the time of our marriage telling me they were so glad Connie and I got together because they did not like the rich Boston doctor she was seeing before me. Sometimes now I wonder if Connie made the wrong choice.

I struggle with depression a lot now. Connie suggested I ask our PCP to give me some drug to deal with it but I don't think that would do any good. I'm pretty sure I don't have clinical depression. I'm just sad that my brain is wasting away. I'm not suicidal but I admit there are times that I am jealous of friends or acquaintances who get ill and die relatively quickly from some cancer or heart disease. It took my mom and my aunt years to die from Alzheimer's and the last several years they were so frightened and confused and such a burden to their loved ones. I feel like I'm already a bit of a burden to Connie and I hate that.

That's all for now.

My Alzheimer's Journal #4

Yesterday was a very depressing day for me. I came to the realization that I was making too many mistakes due to my memory loss in interacting with the brides and grooms whose weddings I would be officiating. So I contacted Father Ken to let him know that after November of this year, I would no longer be able to work with the God Squad Wedding Ministers. I've been with them for almost 20 years and it brought me so much joy and satisfaction. But I didn't want to embarrass them or my brides and grooms by doing something stupid or forgetting something important.

Then last night I saw a funny meme on facebook that involved a humorous pun. So I copied it and when to send it to my oldest grandson who is an expert punster, only to realize that I could not remember his name. That devastated me. I had to look on his mother's page to find his name. He comes to our house all the time. He used to cut our grass before we moved into an HOA community.
But I couldn't remember my own grandson's name. The experience made me remember when my father put pictures of my brothers and I and our spouses and kids on the wall with labels explaining who we were to help my mother remember before we came to visit. I guess I'm about at that point now in this horrible disease.

I remember after my dad died of a stroke thinking that I wanted to go out like him. Go quickly. I hoped not to die like my mom who was so frightened and disoriented in the last year of her life. She got to the point where she not only did not know any of us, she didn't even know her own name. And now, knowing that is my own fate, well... it's very depressing. I remember how much caring for her took out of my dad, even though they were living in an assisted living community. Connie is not in the best of health and I worry about being a burden to her when I lose more of my cognitive ability.

That's all for today.

My Alzheimer's #3

I'm pretty sure my hearing problem is making my Alzheimer's worse. We got back from our trip to see our grandson graduate from Army boot camp on Saturday and then yesterday hosted a welcome home party for him. We had 19 people in our little house and with so many people talking at the same time my hearing aids can't discriminate the words I want to hear from all the background noise. So I miss a lot of what is being said. And working hard at trying to understand what people are saying literally wears me out.

I have, however, discovered one good thing about Alzheimer's. When watching an Agatha Christie mystery I have seen once or twice before, the surprise ending is still a surprise.

One of my most aggravating symptoms is not being able to say a word that I want to say. A couple of times I've resorted to pantomiming the word. Connie almost always knows what I mean when I do that. Yesterday I was talking to Connie about our trip and I wanted to say our grandson's name, I know what his name is but I couldn't get the word out, so I saluted and since we had just come from his boot camp graduation, Connie knew I was talking about Zach.  Another thing I have noticed is that the word I can't get out is almost always a noun.

In a few minutes, Connie will drive me to church so that I can spend time with my Stephen Ministry care receiver. I'm still able to be a Stephen Minister because most of what that entails is just listening.

That's all for now.

My Alzheimer's Journal #2

Years ago, when our first granddaughter was very little, Connie and I were still in our late 50''s. But we were definitely feeling our age and had begun to discuss things like living wills, advance care directives, etc. In one conversation about our future, I remember Connie saying, "I want us to live long enough to dance at Sissy's wedding. Sissy just turned 16. If my disease progresses at the rate my mon's did and if I'm still alive, I doubt I'll even know who Connie and Sissy are.

It seems weird to me that I can remember a conversation with Connie that took place at least 15 years ago, but I need to check my smartphone each morning to know what day it is.

In a couple of days, Connie and I will be going to Missouri to attend our grandson's graduation from Army boot camp. This will be the first time we have gone on a long trip when I won't be driving. I used to love driving. It was relaxing for me to drive on a long trip. But now, especially late in the day, I get confused by lots of stimuli. So if the traffic is heavy and Connie is telling me what exit to look for and semis are whizzing by, I'm so inundated by stimuli that I don't know what to do. And that too makes me feel guilty because Connie has always hated driving in heavy traffic and now she has to or we have to stay home.

That's all for now.

My Alzheimer's Journal #1

My wife has been after me for some time to keep a journal about my struggle with Alzheimer's.  Over the years I have tried journaling several times but always gave it up within a few days or weeks.  Hopefully, I'll do better this time.

I was diagnosed two years ago last month but I had suspected it for over a year before.  When I finally told my wife, she admitted that she had suspected it also and urged me to see the PA I usually went too.  He told me it was not his area of expertise and advised me to see a neurologist or gerontologist. I chose the latter.
Dr. Gouvia has been great and I've made her my PC doctor.

At the beginning of my treatment, she gave me Rx's for a couple of drugs that are supposed to slow down the dementia's inevitable toll. I didn't think it was working and the side effects were terrible so I stopped taking them.

My Alzheimer's seems really weird to me. I can still remember lots of things from my past. When my wife Connie is driving I can give her correct directions to a place we have not been to for years. But if I am driving, I will forget where and why I am going. If my wife is in the car with me, she will say something like, "Why did you turn here." And I will then have to respond, "I don't have a clue. Where are we going?" For that reason, I have stopped driving altogether recently.

It is harder for me to concentrate and follow conversations around me. I've stopped teaching Sunday School because what used to take a couple of hours now takes 5-8 hours and I often misunderstand or simply miss the comments of our class members. I'm still preaching, though it takes me two to three times longer to write a sermon now, I seem to be able to deliver it ok. I still practice it out loud every day for a week before I give the sermon, but I now have to rely on my notes more during my delivery of it. I am going to be very depressed when I can no longer preach.

Likewise for my weddings. Just this week, Connie and I met with two couples whose weddings I will be officiating in September and October. We had such a delightful time with each of them. But there was a time when I would be able to meet with them alone. Now I feel like I need Connie to be with me. If I forget to say something important, Connie brings it up, I add to it, and we go on. But again, I know the day is coming when I will no longer be able to do it. And that depresses me.

But what depresses me most of all is knowing that I will become a burden to Connie. I saw what my mother's dementia took out of my father and I hate the thought of doing that to Connie.

This may not look like much of a first effort at journaling, but it has taken me about four hours over two days to write it. I so wish I had my brain back.

St. Augustine and St. Jordan

“We imitate whom we adore.” --St. Augustine

"Admiring Jesus has been substituted for following him." --Clarance Jordan

These two quotes, unfortunately, are all too descriptive of much of American Christianity today. Admiring Jesus for an hour or two on Sunday morning but imitating, seemingly with adoration, the xenophobic and bigoted rhetoric of 45 the rest of the week.