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Posts Tagged ‘Alzheimer’s Disease’


I read this as a son, and a pastor.

My mother has Alzheimer’s Disease which is a form of dementia. As a pastor, I have had and will have some older members with dementia. A wise pastor won’t stick his head in the sand. Even if you pastor a young congregation, they will have parents who are diagnosed with this horrible disease.

Into this, Dr. John Dunlop wrote Finding Grace in the Face of Dementia. He is a Geriatrics physician. He is too familiar with dementia as a son and a doctor.  He writes as a physician with great bedside manner. He’s informative, and gentle. He’s honest but not despairing. He sees God’s sovereignty in a way that calls us to trust His character, His goodness as we suffer.

“All shall work together for good; everything is needful [necessary] that he sends, nothing can be needful [necessary] that he withholds.” John Newton

When God brings dementia into our lives, He has a good purpose. Much of this has to do with trusting Him more fully, finding strength in our union with Christ. His purpose is to mature us, not destroy us. That is how the Enemy wants to use dementia.

Theology bookends this book in many ways, and permeates it. He gets into the nuts and bolts of dementia at a lay level. He addresses diagnosis and whether or not the disease can be prevented and how it can be treated. He addresses both what it is like to have dementia in its various stages, as well as what it is like to be a caregiver in various stages. He offers some helpful hints for caregivers.

He views those who suffer as image bearers which is counter-cultural. In our culture’s human (objective)/person (subjective) dichotomy those who suffer from dementia can be seen as no longer of value since they have no apparent sense of personhood. Dunlop encourages us to remember that they remain image bearers and therefore have value despite diminished capacity. He speaks of some ways to respect that dignity even as the disease strips them of dignity.

He does have a chapter on the church. Dementia isolates people, particularly the caregiver. I’ve seen this with my father as his world shrunk to match my mother’s shrinking world. Churches should be engaged providing familiar faces for relief and encouragement. Faith can also be sustained, or comfort provided by listening to the pastor’s sermons (a familiar voice) or Scripture read by a friend or loved one. Songs from worship can be played ad infinitum and enjoyed by the patient (as the caregiver returns to the early years of parenting).

The toughest chapter is the last, End-of-Life Issues. It was also the most helpful for me in light of my mother’s recent admission to a memory-care facility. She became more than my father could handle. Her world continues to shrink. She has a terminal disease. That shapes, or should, how other diseases are treated. We should keep in mind that “the patient’s quality of life as perceived by the patient may be far better than that perceived by loved ones or the medical establishment.” We project our fears as a person without dementia upon them. None of us would like to be a baby again, but babies don’t mind being babies. People with dementia may not have an awareness of all they have lost, but enjoy life much like infants and toddlers do.

He addresses feeding tubes. They are used because the patient has stopped eating. They often cause more problems than they prevent or address. They often “stop eating because they are dying; they don’t die because they stop eating.” We have to make sure we are doing what is in the patient’s best interest, not ours. There are times to prolong life, but as the disease gets more severe you don’t want to be as aggressive and put them thru a long, lingering death artificially extended. It is heart-breaking and hard.

Dr. Dunlop has provided a good resource for pastors, elders and caregivers (as well as potential victims of this family of diseases). It is succinct and not overly technical. There is a strong focus on how God is graciously at work through the experience of dementia. I found it very helpful, and one of my congregants who read it has as well.

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I feel like I’ve been here before. That’s because I have.

I’ll be here again, too.

That’s the way it is when you love someone with Alzheimer’s. It’s like they die ten times over. There are these milestones. When they don’t know who you are anymore. It’s as if they cease to exist. Or maybe it is a part of you that dies on that day.

They they go to a nursing home, a memory care unit. It’s like they die again. That grief returns. I’m not liking this very much.

I knew it was coming. I mean it was inevitable. My father has been brave, valiant and persevering in loving the woman who no longer remembers his names, the 50+ years of marriage to him… nothing. But he still cared for her thru those Jekyll and Hyde moments. Thru the incontinence. Thru the moments of irrational fear.

He’s worn out. They were no longer sleeping in bed, but in the living room. Life reduced to her wants and desires.

He’s out of shape. Too many meals out. No longer taking walks because she couldn’t.

An opening came up. $12,000 a month for a double room. Is this what it has come to?

Thankfully another room at another facility became open. A single room for less than the double room. And Thursday he told us this will happen Monday. Heart hits the floor again. This is really happening.

The grief comes at inconvenient moments. I wish it would make an appointment for when I was available. But it comes when I need to write a sermon. I have to compartmentalize the pain so I can function. Best I can figure is that it “metabolizes” into anger.

I realize how isolated I am as a pastor. Where was the friend who would say “I’m taking you to lunch.”? I feel very much alone. Then again, I’ve been alone much of my life.

It happens in the parking lot of the vet’s office. “Why don’t you just cry there?” “What so someone can call the police about a crazy man crying in a parking lot? So I can freak out my daughter?” Stuff it again, so I can get her new ballet shoes and batteries for the irrigation system and van fob. Wait until it turns into anger, again. The horrible, freaking anger.

I called the kids to the table last night to give them a heads up. Daddy’s parents didn’t help him learn this stuff. I hate that I am this way, and long for something better for them. I want to go someone far away so I don’t hurt the ones I love. I’ve become the Hulk. Only I don’t become big and green. While I don’t lose my clothes, I do want to smash. Crying would be better for all involved. Just not in parking lots.

Back in 1992 Andrew hit South Florida. That is sort of an understatement. Steve Brown lost his house and offices. Soon thereafter his mother passed away. He would frequently tell people, “I’m homeless and my mother died.” It was part of his way of dealing with it.

Well, I’ve got a home, but my mother keeps dying.

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11001532_10206025186488500_1318611866669102824_oMy mother has Alzheimer’s. She was diagnosed in the Fall of 2013, if I remember correctly. That’s because I went to visit my parents in the summer of 2014 and she was to the point that she didn’t know who I was.

I never got to say ‘good-bye’, at least so she’d know what was happening. It is hard to see a person who looks like your mother, but who doesn’t remember the last 60 or so years of her life. She doesn’t know who my father is, and calls him “The Boss”. The woman I knew is gone.

She lives in fear. She’s always been a fearful person, but there is less of a capacity to deal with her fear. When I visited with the kids she nearly panicked if they were even remotely near the road. But having them play outside was better than having her not letting them play inside (as happened on a previous visit).

It is tough to consider her life. In many ways she had a hard life as a kid. In some ways this made it difficult for her to be a mother, and to be her son. Nothing like Mommie Dearest, but difficult.

She was born in 1936, shortly before WWII. She was the eldest of 9 kids, and the only girl. That had to be difficult. I think that she, as a kid herself, raised some of her brothers. In some ways I’m not sure she had a childhood, or really knew how to be a mature parent. She did the best she could.

That was actually her understanding of life: God expected you to do the best you could. At least that is what she told the Mormon missionary who came to our door when I was a young Christian. I wish this were so since she was a nominal Catholic who did her best to raise us in the Church. I, her last son, was the only one to be confirmed. Having fulfilled her commitment, I was now free to choose whether or not I went to Mass. I didn’t.

As a teenager I felt like the Gerry Cooney of our family- the last Great White Hope. All my parents hopes seemed to be set on me. That is only my perspective. They never said that. But I was the one who went to college. I am the one with advanced degrees.

She also carried secrets. When I graduated from high school we all went out for dinner. She had a little too much wine, and the next thing I knew I heard about a miscarriage. The woman who had 8 brothers, and at the time had 2 sons lost a little girl. If that girl had been born, I wouldn’t have. I know of a few more, but who knows how many secrets she carried until she lost them all.

I struggled as I fell into the family’s sins. There was warning, but no apparent capacity to help me untangle myself from those sins. One of those sins was her sin- she was an angry person. At times my friends and I took a hellish delight in provoking her to anger.

My real struggle was with her apparent lack of boundaries, or at least her inability to respect mine. She thought she was being helpful. I thought she was being intrusive. I loved her, but I wanted her to realize I was an adult. I think she figured that out by the time I got married, when I was 36.

I think this desire to still parent kids drove her for years. She would baby sit for teachers at the school down the street.

Oh, there were positives. She was the saver in the family. She tried to pass that frugality on to us. She made me save my money from the paper route to pay for driver’s education. When I had it all, she only made me pay half of it. That was a bit frustrating, since I could have taken driver’s ed earlier.

Relationships with parents can be complex. As I tried to sort ours out, I didn’t always handle it well. As a young Christian I wanted something better for them than “doing their best.” I wanted her to know the freedom of forgiveness, to stop having to protect those secrets. I was probably disrespectful. At times I pushed. I didn’t understand how authority affects evangelism. They probably had not idea what to do with me. Thankfully they didn’t cast me out after my conversion like a few of my friends did.

Later, while in a counseling degree program I was angry. I withdrew. It was my relationship with my eventual wife that changed it. Family is important to her. I also knew I had plenty of baggage and I didn’t want her to suffer for the sins of others. I began to address my own anger. I began to realize that my parents didn’t have the capacity to understand or own up to certain things. I couldn’t wait for an apology before forgiving them.

I think CavWife was the only daughter-in-law she liked and respected. I think. It was hard since she really didn’t reach out to CavWife. I’m glad she got to hold her granddaughter. I’m glad she got to visit us here in AZ. My kids did not get her sense of humor. Oh, well.

I still deal with the debris, but I’m choosing not to hang on to things.

Another incremental step in her decline presses in. I’m not sure the best path for my father to take. I’m not sure how to support him from 2,000 miles away.

It still makes it difficult to process her absence because it was a complicated relationship. As a result my desire to mourn seems complicated too. And not just because she is here but also isn’t. I reach for thoughts and words but they seem so slippery.  I’m left with memories, conflicting and confusing (at times) memories.

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In the past my experience with Alzheimer’s has been minimal. There is a Deacon Emeritus in our congregation who suffers from it. I did not have the honor of knowing him before this illness began to take its toll on him. While I felt bad for him and his family, I didn’t have much personal investment, so to speak.

At some point in the last few years I noticed that my mother was losing track of things. Her short term memory was becoming non-existent. She was faking conversations to cover up the pain and frustration she felt (or so I imagine). My father tried to eliminate every possible source of the problem.

Last fall she was diagnosed with Alzheimer’s disease. I had seen her in the summer but still didn’t realize how bad it was by the fall. There were benefits, so to speak. She no longer obsessed over her health, recounting every pain and problem. Perhaps, in a sense, that was a strange mercy for her (and us).

I was prepared for the worst when I saw her this summer. Or so I thought. I was prepared for to not recognize me. She thought I was one of my father’s friends. I thought I handled it well.

I must give kudos to my Dad. He’s doing a great job with her. She looks well-cared for, and he was patient with her while we were out to eat (and she kept trying to order different meals). It has to be a great strain on him. She calls him “the Boss” which leads me to believe she doesn’t really know who he is either. That has to break his heart, but he continues to care for her.

I must admit that I don’t do “sad” very well. I tend to stuff those feelings deep inside. I hate the sense of powerlessness. I hate the reality of what produces it. I’m angrier than usual, and have a short fuse. Anger seems easier than sadness. At least for me, but not for anyone around me.

Eventually the sadness catches up to me, I just don’t know when it will happen.

What is it like to have a mother with Alzheimer’s? It is like she has vanished. There is someone walking around who looks like my Mom, but really isn’t. There is no warmth, no “glad to see you.” There is no delight in my kids as cherished grandchildren. It is like Invasion of the Body Snatchers. She has been replaced with a person who doesn’t respond like she did, act like she did or share a common history.

I’m not really sure what to do with that. I’m not angry with God as if this shouldn’t happen in a world filled with sin and misery. I’m angry because I can’t fix it. I can’t make it better for my Dad. Yet, like most people, I have and hate that sense of our powerlessness and weakness.

Yet that weakness is everywhere right now. I feel weak as a parent trying to raise four kids. Sometimes I’m just overwhelmed by their needs, their sin and their foolishness. I feel weak as a pastor in the midst of a renovation project that seems to produce an unforeseen crisis (costing more money we don’t really have) each week. Weak as I try to manage church conflict and miss friends who have moved away. I see those empty seats where a few families used to sit and wish we could have another meal together.

Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12

I hate my weakness. Instead of boasting in my weakness and boasting in the power of Christ (whose power is made perfect in my weakness) I rage. Stupid, I know. Foolish, indeed. An act of unbelief.

But nothing can change the fact that my mother is gone, and I can’t say ‘good-bye.’ There is the sense of loss, but no opportunity to say ‘good-bye’ unless I manufacture one. But then I will see the person who looks and sounds like her.

In the months and years to come I will learn more about this disease and its effects on families, on the soul. I’m not really looking forward to that. There will be things that I wish I could forget.

This morning I read some Martyn Lloyd-Jones on the subject of trials. I know God is using this to develop patience in me (Romans 5; James 1). This means He has to reveal the impatience in me- the impatience that drives my anger. It is a painful process and an ugly process. But the result will be good. He will hang on to me, so to speak, through the process

In the midst of all of this I am reminded of the final recorded words of John Newton: “My memory is nearly gone, but I remember two things: That I am a great sinner and that Christ is a great Savior.” May I never forget these two things.

 

 

 

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The deal is the deal.

Sometimes.

Because sometimes the deal changes.

My parents were supposed to visit us in NY for a few days. My father has some things he wanted to talk about. But when your mother has Alzheimer’s things can change. She wasn’t up for a long ride to New York, and she really wasn’t sure who she was going to visit.

My father called an audible, which was okay. I’m not really sure how to handle this development with my kids. I’m not sure how they will respond if they realize my mother has no idea who they are.

So I agreed to travel to them and spend a night at a friend’s house. My plan was to leave around 7 am. Man plans, and God laughs. No, nothing dramatic. I just wanted to do a few things before I left. I packed light, except for books.  I needed my caffeine fix so I made tea. I needed a travel much to keep it in so I borrowed one from my in-laws. By the time I wrote down the routes I wanted it was nearly 8 am. I was off. I could still make it to NH around lunchtime.

Just before I reached the end of Route 8, about 10 minutes away, I realized I forgot the book I was going to give to my father. I’d picked up an extra copy of Keller’s Walking with God through Pain and Suffering. I’m not sure he’d read it, but you never know what the Spirit might do. I knew that I should have taken it out the night before. Well, heading back wouldn’t cost too much head back and I really didn’t want to mail it. So I turned around. When I left, for real, it was 8:30. I didn’t see a cup holder, so I had to pull over to secure the travel mug because things were sliding around. Things just weren’t starting off well.

The radio in the Subee ( the nickname for  the Subaru) doesn’t have an aux jack, so I had to settle for the few stations. These were not good options. Mostly they were NPR. I learned quite a bit about Albany’s politics, including the stat that since 2000 10% of the state legislators have left due to corruption of one kind or another. I actually made pretty good time into Vermont. At times I got stuck behind the scenic drivers, the ones who drive 10-15 miles below the speed limit for unknown reasons. I recently read the Heidelberg Catechism on providence (actually I’m reading Kevin DeYoung’s book on it). I was neither patient, not thankful. I have a ways to go yet in this thing called sanctification.

When I finally took a sip of my tea, I made a shocking discovery. Teaffee! The coffee taste from the mug overpowered the taste of my tea. Not good, not good at all I say.

I had to change the station a few times to another NPR station, usually, as I made my way across Vermont. I often stop at a restaurant near the Quechee gorge. This time I was a little early for lunch when I arrived in Quechee. I tried to call my father to see if they had lunch plans but I had no service. That is another common problem alone Route 4 in Vermont. Shortly after getting on 89 I called my father and talked to him. We would be getting together for lunch. No more than 2 minutes after hanging up with him the highway became a parking lot. I had just passed an exit and was drawing near to a turn around. I quickly used my map app (thankfully I actually had service) and discovered a road that ran parallel to the highway to get me to the next exit. I turned around and got off the highway at the exit.

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We had a really great vacation with family over the holidays. They went up on the 17th and I followed behind on Christmas Day. There was plenty of time with family as 4 of CavWife’s 5 siblings were there for New Year’s and the annual White Elephant Gift exchange which gets more interesting as the kids get older and start participating. For the 2nd year in a row I got the Taylor ham- a NJ breakfast meat that I have grown to love.

One sibling built a pond this summer and this winter it was a skating pond. So our daughters learned how to skate. The boys were not so inclined, though the youngest enjoyed playing on the ice and with a hockey stick by the time we left. There was a guys night out as the 4 of us went out to Bar Vino for a few beers and appetizers. I like for us to get away and talk: sometimes serious and sometimes not.

There were a few snow storms, including Hercules who dumped over a foot of powder on us. As a result there was some sledding. On the downside, I didn’t have a good window of snow-less driving to visit my parents. My mom was diagnosed with Alzheimer’s Disease this fall. Since I haven’t driven in snow much in the last 20 years I really didn’t want to get stuck in the mountains of VT in a snow storm. Another factor was the older CavGirl’s birthday and our 12th anniversary. Not really the days I want to be away from family to visit my parents.

Since we had an early flight home, my in-laws used some of their points to get us a hotel room for the night before we left. Sunday night, after one last get together and skate party the snow turned to rain as the temperatures soared. Monday was the great meltdown before the temperatures plummeted as a result of the arctic blast that crippled the country. It was slippery near the house but after we got off the hill the roads were much better. The only problem was our rear tire. While loading the Envoy I realized the tire was nearly flat. Usually my father-in-law is all over these things. This winter I was the one to catch 3 really low tires. The other 2 were on our lunch trip to Glens Falls. Up there in the mountains, there are no gas stations right around the corner. I thought I could get to Warrensburg and inflate the tire. The last 100 yards or so I could hear the thump-thump-thump because it had moved past low to officially flat. I filled it and off we were to meet our in-laws in Albany for dinner and they would drive both vehicles back to their home.

While driving we learned that our friend who was going to pick us up had his own flight home canceled and was re-booked to arrive home Wednesday. He’d be stranded in Dallas. So we left a message with another friend to see if they could pick us up.

I made a big mistake though. There was no sun on the way to Warrensburg so I kept my sun glasses in my briefcase. By the time we got to Glens Falls the sun was relentlessly beating into my right eye as we drove south to Albany. As we drew closer a migraine began to set in. I felt pretty lousy. It was also much colder in Albany as we unloaded the Envoy at the hotel.

We heard from our friend that she was willing to pick us up, but the other friend had gotten a flight from Dallas to Phoenix so he would be home in time to pick us up. He would have to go to the airport anyway since his bags were going to Tucson.

CavWife had inadvertently started the movie for the kids that we rented from iTunes. It was now going to expire the next morning before we got on the flight. So the kids started to watch Despicable Me 2 while I napped. Around 4:30 we left to meet with my in-laws for dinner at Moe’s. We didn’t want to eat too late since we didn’t want the roads to freeze on their way home. We love Moe’s and wish there was one in Tucson. CavWife got her usual John Coctostan, while I got the Home Wrecker which I re-dubbed the Hotel Wrecker. Then it was time for good byes in the cold.

The kids were going to shower before they finished the movie. Still feeling the effects of the migraine, I sat in front of the TV. That was when two things happened.

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