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.