Old Home Place

Not my old home place but my dad's. He was not born in this house though. That one burned and this one was built about 1925. It measures about 16 ft square and has 4 rooms. I took this with my Treo and was standing in front and to the right. This is the west and south sides. There was a living room, 2 bedrooms, and the kitchen. Both bedrooms had closets which my dad told me was a very modern innovation for the time. It seems so small for a family of 6 by today's standards. No wonder they were so close. My childhood home wasn't much larger. But I wonder if the larger homes we have now changes how close a family feels to each other?

The trees around the place used to be much prettier. There were pecan trees and about a half dozen pear trees. For many years my aunt and uncle would drive down and harvest both pecans and pears. There are still black locust trees right in front. But all the trees have been damaged by various storms over the years.

When I was a kid, I would accompany my dad to work on the old farm on the weekend. Sometimes mom would go and we would take the old Nash that had the front seats that fully reclined. We'd sleep in the car and I thought that was so cool. Later it would just be dad and me. We'd drive down in the old 1950 Chevy truck. The truck wasn't very good but better by a long ways than the roads.

Usually we would leave really early and get down there while it was still dark. Dad's friend, George, would already be there. The old house was in good shape then. It didn't even have a lock. George would have made a fire in the old wood stove and a pot of black coffee would be boiling in that speckled enameled steel. We had cups of the same material and dad would put a bunch of sugar in mine. I still think that was the best coffee. The grounds kind of settled to the bottom.

Sometimes George would have a catfish he'd caught from the pond - which was new then - thanks to the county extension agent. If we stayed all day then he'd cook it. But usually we started back around noon. Then Dad would stop at a place in Chickasha called Fowler's I think it was. We'd get hamburgers and a chocolate malt.

If we had time Dad would take me down to the old swimming hole where he and his brother and sisters swam. It was fed by a spring then and always had water but it isn't there anymore. And then we'd look at the old chicken house and the barn and the well. My pop dug that well by hand. I was fascinated with the old cellar. It is still there but has a bunch of debris in it to keep the cows out.

When we looked at the cellar dad would always tell about being in there once during a tornado and how the tornado ripped off the door even with his father and everyone else holding onto the rope. He'd also tell about his brother making wine in the cellar and the bottles exploding.

He'd show me the old watermelon patch and tell about sitting down right there in the row and cutting a melon open with his pocket knife and how sweet and good it tasted.

We'd walk from one fence to the other and he'd tell about his dad (my pop) coming there as a very young man on horseback before statehood. I told my son those same stories and more about his pop as we walked together that very same pasture. Dad and mom built their "dream home" in 1964. I was already 16 and left just 4 yeas later. This is where dad and I live now. I'm sure that first place must have been just as much a dream for those people 100 years ago. I don't know why we keep the old place but no one wants to sell it. Maybe it's the dream part.

The Pendulum Swings

It was one week ago, Thursday, August 23, 2007, that Dad rather suddenly recovered enough to become ambulatory again. It was in the afternoon that he improved so much and so quickly. The hospice nurse had already come and gone. She and I had talked about his increasing need for sleep and how it was probably due to the steady encroachment of the disease. I told her he hadn't been up much all week and I had been having to bring his meals up to his room and he was not eating very much.

Each day since he has improved. Tuesday, August 28th, was the high point. He went down to the basement for the first time since last year. He was even talkative - at least to an extent - to the hospice volunteer. She remarked that it was the first time he had ever spoken to her.

She was just so happy and excited. I've noticed that reaction before in people and I still find it somewhat puzzling.

He let me bathe him and let the hospice aide shave him. Was that Tuesday or Monday? I don't remember. He had a ballpoint pen, a comb, and a mechanical pencil that he carried everywhere with him. He would not release them. He fought me a few times on changing.

Dad's shadowing also increased. Tuesday when the hospice volunteer came he tried to go with me but I hurried away. That's when he visited with the aide. My son and I watched part of the documentary Malcolm and Barbara: Love's Farewell. Then we went to Starbucks and sat on the patio and drank our Blueberry Frappuccinos®. I had a nice time. I was pretty screwed up really.

Tuesday night was the most extreme and we were up almost all night. It wasn't for any particular reason. He just didn't want to go to sleep away from me. So I'd sit with him and he'd fall asleep and I'd slip across the hall into my own bed. Then I'd hear him and he'd be up and hunting me and we'd start all over.

About 8 AM Wednesday morning I went into his room. He was sound asleep so I exercised. I returned and he woke up but would not get up. So I exercised some more. I took a couple of phone calls and answered some email.

Finally about 11 he was awake but combative. I applied the ABHR. Later he was not so combative but he told me he couldn't get up. I went down to fix some juice for him. He came down the stairs while I was fixing it!

I took him back up to change his pants and by the time we arrived in his room he was exhausted. I managed to get him changed but he went right to his bed. Said he had to. So weak to have just been so strong.

When we go up the stairs together he gets to the top step and reaches with his right arm to grasp the post. He pulls himself up then that last step or two.

So for lunch I fixed some yogurt and fruit. He fed himself just fine. He was recovered but would only sit on the side of his bed.

He's sleeping away and I'm trying to do the same this Wednesday afternoon.

He managed to come downstairs for supper and did fine. While he was eating he handed me something. It was a crown from his mouth. He hardly paused. I kept it. I don't know why.

We're back upstairs now. If I leave he hunts me. If I stay then he sleeps. He wants to sleep but he wants me to be here.

If I go to sleep or have my eyes closed and he awakens then he hollers at me "Hey Hey Hey" pretty loudly.

Sometimes I feel like I am in a vise.

Now it is past midnight on Thursday, August 30. I tried to come to my room about 10 pm the first time. It's been a repeat of last night so far. I'm going to try one more time to sleep in my room and if he still tries to get up and hunt me I'm going back in there to sleep in the recliner.

He's having a lot of trouble walking. His leg kind of crumples and then he catches it and straightens. Still the shuffle but with the added crumple. I bet they don't make an Alzheimer's commercial like that.

Greatest faith

Bad night last night with dad. He was up and down for a long time. I am so tired today.

I've been thinking a lot about faith.

Now Jesus started on His way with them; and when He was not far from the house, the centurion sent friends, saying to Him, "Lord, do not trouble Yourself further, for I am not worthy for You to come under my roof; for this reason I did not even consider myself worthy to come to You, but just say the word, and my servant will be healed.

"For I also am a man placed under authority, with soldiers under me; and I say to this one, 'Go!' and he goes, and to another, 'Come!' and he comes, and to my slave, 'Do this!' and he does it."

Now when Jesus heard this, He marveled at him, and turned and said to the crowd that was following Him, "I say to you, not even in Israel have I found such great faith." Luke 7:6-9 NAS

A Centurion would be something like a company commander in the US Army. Normally that would be a Captain rank and a professional soldier. He would have commanded at least 80 men.

My first thought was that it was interesting that he would care so much about a servant. But upon further consideration I actually think that's very much in character for a military leader. Leaders are often painted as uncaring and unfeeling but my experience has been the opposite.

It is clear to me from the passage that the remarkable thing about this man was his understanding of the nature of Jesus.

He understood that Jesus was of great rank and importance. The centurion did not feel worthy to even meet Jesus personally much less for Jesus to enter his home. That's a lot of respect.

He also understood that Jesus had such authority over the entire creation that Jesus only needed to give the order and that order would be executed.

That's truly remarkable. I really do understand why Jesus marveled.

Malcolm and Barbara: Love's Farewell

I'm posting a 2nd entry today.

I became interested in Malcolm and Barbara Pointon due to a recent post on the Alzheimer's Forum. So I did a little searching (can't really call it researching can we?).

There have been 2 documentaries made about the couple's struggle with Alzheimer's disease. The first, Malcolm and Barbara: a love story, was shown in 1999. The second is Malcolm and Barbara: Love's Farewell. The final episode was aired August 8th, 2007 and was embroiled in controversy.

The controversy to me was ridiculous. It had to do with whether Malcolm actually died in the video. He actually slipped into a coma and died 3 or 4 days later.

Malcolm was diagnosed at age 51 and died in February, 2007 at age 66.

I found 4 parts on YouTube of Malcolm and Barbara: Love's Farewell:

1. Part 1
2. Part 2
3. Part 3
4. Part 4
   

I found the final segment here on Mike Powers website.

Pretty difficult to watch.

There's probably more - but this is what I found.

Insecurity, Fear, and Anger

Sometimes we express something exactly the opposite of how we really feel. A lot of times we don't really know how we really feel either.

• Someone who really feels inferior acts superior.
  
• Someone who feels he has failed criticizes others that he perceives as successful.
• Someone says he knows who he is but deep down is so lost.
• Someone says he is optimistic but acts pessimistically about everything.
  
• Someone says he loves but exudes hate.
• Someone says he is happy but acts angry.
  

Anger is interesting. Anger can be aggressive and confrontational. But anger can also be passive. There's even a term for it, passive-aggressive.

Dealing with passive-aggressive people is so frustrating. The Lord gave an interesting example of passive-aggressive behavior in The Parable of the Two Sons in Matthew 21:28:

"What do you think? There was a man who had two sons. He went to the first and said, 'Son, go and work today in the vineyard.' 'I will not,' he answered, but later he changed his mind and went. Then the father went to the other son and said the same thing. He answered, 'I will, sir,' but he did not go. "Which of the two did what his father wanted?"

The second son exhibits passive-aggressive behavior. If he were asked why he would deny disobedience. He would say he forgot or hadn't gotten to it yet. He would be all sweet and nice on the outside but seething on the inside. He would see himself as the victim, too. He would never take responsibility for anything himself. He would act superior and even think he was superior to everyone else. He would claim to be a certain kind of person and never realize that he was so obviously the opposite.

The Lord was talking to a bunch of Pharisees. As a group they were passive-aggressive. They wore their righteousness on the outside and walked around criticizing and complaining about everyone else. They really hated The Lord.

I've read that passive-aggressive behavior is often the result of repressed anger from childhood.

I suspect that's true, too. I know a little about repressed anger. Sometimes I've been so angry at my dad but I know that he is not responsible and so I try with all my strength to never direct my anger his way. But invariably I run into someone who has done absolutely nothing to me and that poor innocent gets the full load of my repressed anger.

I've noticed it is a lot easier for me to be angry when I am afraid. I think anger is defensive. It's like the little Chihuahua dog that bristles and barks like crazy at the huge Rottweiler. Since we are impartial observers and notice that the Chihuahua is 6 inches tall and weighs about 5 pounds and the Rottweiler is at least 24 inches and 110 pounds it is rather apparent who is going to win the fight. I think our anger is like the Chihuahua and our fear is like the Rottweiler.

On the other hand you can watch the Rottweiler who peers down at the Chihuahua. Sometimes he is rather bemused but mostly just unconcerned. That's security.

If you can't tell I've actually watched that Chihuahua and Rottweiler (not mine).

I'd rather be the Rottweiler.

That's pretty much it for this post - just a bunch of random thinking that escaped. I need to keep a better hold of it but sometimes it leaks out.

Working a day

I asked my aide if she could stay with dad from Thursday noon overnight until Friday afternoon.

She scrunched up her eyebrows and looked at me like I had asked something a little crazy. I thought her reaction was a bit strange.

But after she left I thought about it.

Really it is only in the caregiver universe where working days and nights without interruption seems not only reasonable but normal.

Had to laugh at myself.

We're thinking we're going to try a little trip this week. Kind of a practice run before our slightly longer trip for our anniversary.

Size

I read a news article from Reuters on Thursday, August 23, 2007. The first part follows:

WASHINGTON (Reuters) - A giant hole in the Universe is devoid of galaxies, stars and even lacks dark matter, astronomers said on Thursday.

The team at the University of Minnesota said the void is nearly a billion light-years across and they have no idea why it is there.

"Not only has no one ever found a void this big, but we never even expected to find one this size," said astronomy professor Lawrence Rudnick.

A light year is a little less than 6 trillion miles (6 with 12 zeros). A billion is 9 zeros. So that's a total of 6 with 21 zeros. That's really, really big. And we didn't know it was there - or not there - as you prefer.

Sometimes I can see very small living things. If I am walking through the pasture for instance I might stop at a red ant bed and watch them for a while. I am so much larger than they are and yet for the most part if I am careful about where I step they seem to be unaware of my presence. And believe me that's best.

Or I've seen these really tiny little spiders on the tile floor in one of the bathrooms. They are much smaller than the ants. But I can still see them and they are spiders. I think they are fascinating in themselves but what really impresses me is that because I see them I can infer that there must be yet smaller creatures that the little spiders eat. They pay me absolutely no attention. I know that there are things even smaller that can only be seen with microscopes.

And I know the universe is so huge and it is filled with so much larger things compared to us. Even large empty things. It is rather amazing that we just found this really, really huge empty area. It has been there all along and it is just unimaginably big. But we didn't know about it.

Sometimes I wonder if we are like the ants or the little spiders or even the microbes and we are just so small we are unable to see the really big things around us.

That's it - no point to this - just something I was thinking about.

Instructions

I have a friend who, most of the time, can build things and put things together without any instructions at all. He envisions the end product and then takes all the individual pieces and puts them together. It's perfect, too.

Whatever that is that allows him to do that is not present in me. I need instructions and tools and patience and it still takes me longer to put the thing together. Usually I have mistakes even then.

I've noticed that sometimes when my friend puts something together he might deviate from the written instructions. He can do that because he knows what he's doing. He "sees" the end result and he "sees" various ways to get there.

I understand some of this although not in exactly the same way. I am good at certain things. I take liberties with what I am good at. So I understand a little. In my case it is mathematics and computers. I didn't find out about computers until the late 60's because they weren't much around before then.

I recall when we started getting those "thought" problems in grade school and everyone had so much trouble solving them. I never did. I just knew the answer. I remember the teacher telling us how important it was to learn the method of solving the problem. I thought that was kind of funny because I didn't really need a method. I could usually "see" more than one way to do it. Back then you had to show your work and if you didn't follow the method then your grade suffered. You could even get the wrong answer but still get points if you followed the method correctly.

I had a friend that was an artist. She could always tell you the answer and it would be correct. But she had no idea how she arrived at it. She didn't get good grades because of that.

But real life is not like school. In real life it is the answer that counts. No one cares about the method you used. Well as long as you avoid prison at least. For instance if you are a car salesman then your paycheck will depend on how many cars you sold period. You won't get money or gold stars or anything for following a certain script.

Caregiving is real life for sure. It is all about results.

Dream

My friend skygirl wrote a few words about her dream not long ago in her blog Counting Blessings.

Not dream as in dreams during sleep. But dream as in my dream house or my dream vacation or my dream job. Except in this case it is my dream life.

I am afraid to dream if I am totally and brutally honest with myself. Because it involves life after caregiving. And life after caregiving means dad has died.

It isn't that I am afraid of death, either my own or his. I have absolute faith in our afterlife. I know we will reunite. So it isn't death itself but rather the vacuum that occurs after the hustle and bustle is over. Its a big empty feeling. I guess it isn't even that feeling because that feeling is temporary, too. It is the transition. It is so sudden. It is like hitting a wall at 100. I know it is brief but I still don't like it.

Then there is the uncertainty of that time. Will I have something to do? What will it be? Will it be fulfilling? I feel so old but will I feel younger again? I am certainly not young anymore. I've written about this previously.

I want to be with my wife. I owe her. She married me in the midst of this. It is one thing to find pain as an in-law but quite another to knowingly embrace it.

I need a dream.

Little by Little

When mom died I wondered how dad and I would manage. Mom and I talked. Dad listened for the most part. So it was with some concern that I considered how the two of us would get along.

But we did just fine. Dad continued getting up pretty early just as he always had. I made breakfast just as I had been doing. Except that mom always wanted an egg. Dad always wanted cereal. Doesn't take long to make cereal. Then we made the beds together. Dad and mom had done that until she was unable.

Trash occupied a considerable amount of dad's time. He would cut up boxes and separate out his containers and jars for his collections. And for a long time he remembered the day he had to take the container down to the road. It's kind of funny because trash seems to still occupy a good part of my time.

For a long while we drove around the pasture picking up trash. We'd usually drive down the east fence to the south boundary and then west and so on until we had driven the entire perimeter. I got us stuck once and we had to walk back to the house.

I had this outfit come in and clean up the old oil well pad but while it was there we would go there and walk around. I had this idea maybe that he and I would tear down the old barn but he had already lost too much by then so I hired it done.

At 9:30 each morning we stopped for our coffee break which by then was hot chocolate for him. That's when we would read the paper and the obituaries. He read to me at first and then later I read to him.

Lunch was at noon. I fixed him a half sandwich. Sometimes turkey and cheese and sometimes peanut butter. Then a cookie and some fruit and juice.

In the summer he mowed and I would watch from the porch. He would wave at me as he came around. In the winter we watched a lot of History Channel and listened to music and did various things. We had our coffee by the little fireplace in the winters.

We visited the cemetery every day for a long while. I bought him milkshakes at Sonic on the way back home. We even went to supper once or twice with old friends. He helped me fix supper and we made cookies together. We went to buy groceries together. Sometimes we would visit my daughter and her family or we would see my brother. We had occasional visitors for a long while, too.

Once or maybe twice we drove the 2 hours to the farm of his birth and walked around on it. Then we went into town and visited his grandparents' graves at the old cemetery.

When I was working he would sit in the office with me. I would program and he would sit and look through different magazines and books. We had several business meetings in that room. We would listen to music.

I don't remember what changed first or the order things were lost. One day he couldn't set the table any longer. He would take a plate from the cupboard and put it on the table but then he would put it back. I helped him by putting everything on the table and then he could take it from there for a while longer.

One day he just lost interest in trash. He didn't remember the day any longer.

One day I told him the grass was pretty tall. He said "No, it was alright." He never mowed after that. So I started mowing and he sat on the porch. And as I came around he waved at me from the porch.

Little by little things changed. Reminds me of an old song by Dusty Springfield, although I don't think she had Alzheimer's in mind:

Little By Little

(buddy kaye / bea verdi)

Little by little by little by little by little
Little by little by little by little by little

You’re messing up my life
Tearing me apart
Breaking up my world
And I’m giving up my heart
Little by little by little by little

I’m losing all my pride
It’s really getting bad
Hurting deep inside
Is a-making me go mad, ooh
Little by little by little by little

Little by little
Bit by bit
I’m going crazy and you’re causing it
Little by little
Bit by bit
I should stop caring
But my love won’t quit

Little by little by little by little by little, yeah
Little by little by little by little by little, all right

I don’t know where to turn
Don’t know what to do
I’m walking on thin ice
And it seems I’m falling through, ooh
Little by little by little by little

Little by little
Bit by bit
I’m going crazy and you’re causing it
Little by little
Bit by bit
I should stop caring
But my love won’t quit

I’m the queen of fools
Know the deck is stacked
On a losing streak
But I’m a-gonna get you back

Little by little by little by little
(little by little by little by little by little)
Yeah, little by little
(little by little by little by little by little)
Ah, ah, ah, little by little
(little by little by little by little by little)
Little by little, mmm
(little by little by little by little by...)

Little By Little

Aloneness

I had not really lived alone until my divorce which was coincidental with my children leaving home.

Coming home to the big, empty house required considerable adjustment. I was no longer a husband and my father role was drastically changed. What in the world was my role?

I still recall going to a restaurant by myself the very first time. I could not figure out where to look. Later on I noticed that a lot of single diners had books or magazines or papers to read. Attending church one Sunday morning I could not help but notice the couples and families so tightly grouped together and interspersed here and there were little individual islands of us singles. The singles kept a distance between themselves.

I think the biggest thing for me was realizing that there was no special person anywhere that cared whether I got up or not. And for a while I certainly didn't much care myself. One morning in church there was a young couple sitting in front of me. The woman casually patted her husbands neck and let her hand fall down his shoulder and arm. It was so beautiful it made me ache. It is the smallest thing that seems to cause the flood of emotion.

By the time I came to live with mom and dad I thought I would never adjust to living so closely with people again.

Why am I sitting here?

Sunday, August 19th, 2007

It rained all last night and most of the morning. It was raining so much I decided I'd better stay home so I canceled my aide. Tropical storm Erin was coming through.

Dad didn't get up until middle of the afternoon. Well he made it two feet to a chair at least. He finally ate his breakfast and fed himself. His right hand is so shaky. It is painful for me to watch him. He has this thing about wanting to be so far away from his food. It is driving me nuts. He stayed up an hour or so and then went back to his bed. He seems to be cold.

He got up again to the chair about 9 pm and ate a little supper. I had to feed him his ice cream. Then he got back in bed. I moved to my room.

But I sat with him all day. He slept. I sat. I thought why am I sitting here?

It reminded me of the times in the hospital with mom and then later with dad. Mom was in a month the first time. Dad and I stayed all but a few nights. He would not leave her and I would not leave them.

The dietitian was of Asian heritage. The first time she came in we were all there with mom: me and my brother and our dad. The dietitian said we were like her family and that Americans didn't usually do that. I think she meant us non-Asian Americans. She said most just dropped their relatives off and left.

I have to figure out how to live again with him always in bed like this. I wonder if it will change again though.

The Lion King

My friend Stef posted in her blog life through my iris a song from The Lion King. The name of the song is Endless Night. I had never seen The Lion King so Stef made me promise to watch it.

First I tried to rent it but the places I checked said they had it but all copies were out. I thought that was kind of impressive in itself since it has been 13 years since the movie was released. I finally bought a copy and it arrived this week.

Friday night is my respite night. So we had pizza and watched The Lion King.

One of the first things I noticed was that there really was not as much CGI as in more recent animated movies. I researched this. The stampede scene in the movie was an early use of CGI. The 2-1/2 minute scene took 5 specialists more than 2 years to create at the time. That means they probably began working on the scene in 1992. Computers and software and techniques have changed so drastically in 15 years.

Another thing I noticed was that the movie really does pursue complex themes many of which are rather mature.

Music is really an important part of the movie and is fabulous.

There are so many ways to think about the movie. It is a story about sin and redemption. The sin causes the entire kingdom to suffer and redemption restores the kingdom as well as the king. It is a story about coming of age and passing from childhood to adulthood. It is a story about love and sacrifice, about duty and responsibility, about good and evil, about temptation and escape, about chaos and harmony. There is even a political theme that one might pursue. One could even write about the theme "Your sin will find you out." There are more.

It is a wonderful story presented in an epic way. I enjoyed it immensely. I am certain I will watch it again. It is a movie that does not disappoint its reputation.

The Lion King, Mufasa, and his Lion Queen, Sarabi, are blessed with the birth of a cub, Simba.

Simba is innocent and trusting and eager to please. Scar, his father's brother and rival, is the opposite and does not hesitate to take advantage of Simba both before and after the murder of the King. Mufasa, the father, does not hesitate to act to save Simba the son even at the risk of his own life which is ultimately lost. Scar deceives Simba into accepting the blame for his father's death.

It appears that evil has triumphed over good.

And yet Simba is saved despite Scar's attempt to murder him. He flees both those who would kill him and his own guilt for disobeying and dishonoring his father. He rejects his identity, considering himself unworthy, and is desperately lost. He wanders in the wilderness where he meets two other outcasts, Timon and Pumbaa. He grows physically and adopts his friends' lifestyle, hakuna matata, kind of a live free, no worry philosophy. He does not realize it but it is during this time that he learns lessons of humility and loyalty and love. He even learns a kind of faith.

Eventually the time is right for him to establish his own identity. He feels so unworthy and he struggles. He does not want to leave his friends but he cannot ignore his own heritage and ancestry. It takes both the love of Nalala, his childhood girlfriend, and the wisdom of Rafiki, a shaman, to help him find his way. His physical growth is complemented by the emotional and the spiritual.

He takes his place but not without a battle and the outcome is never certain until the end. Simba has to defeat his own uncertainty, the enemy within, as well as Scar, the enemy without.

It is easy to understand the wide appeal of the movie. Who has not felt guilt and shame at one time or another? And who has not felt like an outcast? And the appeal of hakuma matata is universal as well. Everyone at some point wonders about her ancestors. We all eventually run into our own Scar and our own internal doubts and shortcomings.

But in the end Simba assumes his rightful place in the Circle of Life.

Thanks Stef.

Discipline

I was watching the news the other morning about the earthquake in Peru. The reporter, who was live by satellite from the scene, told about how difficult it was to get there. They had to travel by 4-wheel drive vehicles and drive through streams and around other obstacles.

He said that water was in such short supply that people along the way would run after them begging for water.

They didn't stop but continued to their destination so they could set up to report the story I was watching. Very likely those poor people who were begging for water experienced the same disappointment again and again that day.

Rescue and relief requires a good number of people who have to be narrowly focused on the goals they've been assigned. An ambulance dispatched to a specific address can't really stop to help someone else encountered in route. Or a crane truck or a dog rescue unit or workers each would have to continue on to their particular assignment and drive by other disasters.

I bet it is hard on the people though to have to ignore the cries for help and keep on going. I know it would just kill me to have to drive past people begging for water or needing help of some other kind and ignore their pain and suffering. It takes discipline and fortitude to do that. And still it must take a toll.

Caregivers have to be like that.

The loved one who is the patient is the mission. His or her needs take precedence.

Sometimes it seems exactly like we drive past those begging for water, too, in order to meet those needs. And often those others begging for water are themselves people we love.

Still it is hard to get that image of driving past people begging for water out of my mind.

Pity or Sympathy

Family caregivers for loved ones suffering from Alzheimer's are frequently drawn to support groups and forums where they can share their experiences.

Caregiving is a lonely endeavor. For one thing it is isolating by its very nature since it requires a certain amount of confinement. It also involves a good deal of loss and grief. Pauline Boss, a university researcher, defines the loss as being ambiguous loss. In the case of Alzheimer's it means someone being physically present but emotionally and psychologically absent. Boss says her research indicates that ambiguous loss is the most stressful kind.

So a place where caregivers can just talk (or type) and listen to (or read) others doing the same thing is an especially valuable tool for fighting the isolation and grief.

Some people think that caregivers write about their experiences in an effort to solicit pity. I know that because I have read it in more than one place. Fortunately no one has ever said anything like that to me, at least to my face (or whatever the online equivalent is).

I've never really viewed pity as a particularly virtuous emotion. Somehow to me pity always involves someone assuming a superior position to an inferior. At the very least it is the non-sufferer showing pity to the sufferer. Someone who has never been homeless pities the homeless person. Someone who has never been hungry pities the starving person. Pity to me involves the idea of feeling sorry for someone but at the same time never thinking that thing, whatever it might be, could happen to me.

If we who write about our caregiving experiences wanted pity then I think we would not be attracted to those other caregivers who are doing the same things. We do want sympathy and the only place you can get sympathy is from those who understand the same experiences.

Even people who have never experienced something can by sympathetic. I think that's one reason that so many Americans are so generous. Those that give almost always are the sympathetic type it seems to me and they recognize that this disaster or that could just as easily have happened here as there.

There are people who seem unable to achieve sympathy. I think it must be terrible to have no feelings of sympathy at all.

Hospice is an attitude

Hospice is a great program. Dad's doctor recommended hospice in January and they admitted him the first of February. Dad has been helped so much he is tremendously improved. So much so in fact that I wondered if we would be allowed to remain. And hospice has helped me a lot, too. Just one example is when I was gone for 3 days the hospice nurse gave dad his insulin injection. That's a big deal for me.

No one really knows why dad improved so much. It could be this very strange disease. It could be something else. It could be he doesn't even have the disease but some other form of dementia. Our best collective guess is that he had unknown and undiagnosed pain that's been relieved to some extent. But it is just another single uncertainty in an entire ocean of uncertainties.

Pain is tough to deal with in dementia patients. It is kind of like with really young children. They just are not able to express whether they are hurting or the nature of the pain. The clues have to come from some other behavior. So the dementia patient might act aggressively or exhibit other strange behaviors because of pain. But it is hard to know, another uncertainty, because the dementia can also cause those same kinds of behaviors.

Hospice is concerned with making the patient as comfortable as possible and pain free. They are not concerned with cures and treatments and such. Which is good because Alzheimer's has no cure and no treatment.

I know all of this of course and I agree with it and I signed up for hospice.

Making every decision, especially in health related matters, for someone else is an entirely separate and heavy responsibility from caregiving. It again is where the responsible person has to set aside his or her own self and attempt to do what the loved one wants. How does one be objective in a subjective situation? Especially when there is already a conflict of interest for the person making the decisions. I find this stewardship role to be an entirely heavier burden than I expected.

Just this last week dad's condition worsened dramatically. This recent episode really tested my own attitude and resolve about hospice. I just so naturally fell back to thinking about finding and treating whatever was causing these symptoms. I wondered if we should not go to the ER or check into the hospital and run tests and so on. And I know how bad the hospital experience is having endured several with dad myself. So I questioned my decision about hospice. I can leave anytime so I wondered if I should. I questioned whether this is really what my dad wants.

Sometimes I wonder anyway that if I had somehow found a different doctor and he had used different drugs that dad wouldn't be like this. He'd be all himself again.

I waged a little war inside my mind. It was entirely internal but that makes it no less violent. It is a cruel war and one that I fight a lot. It is cruel because I have to take both sides. It gave me a little foretaste of what is going to happen someday. It made me question how I am going to handle things the next time and the next and then that last time whenever that may be.

I have found so often over the years that most things require a little knowledge and skill and a whole lot of practice. For some reason I hadn't expected that with hospice care.

All of my life has prepared me for the rest of my life. I find that so interesting.

Newspaper

I do not know why I continue to take the newspaper.

Actually it is Dad's subscription of course, not mine. I suppose he has had it since 1951. At least the newspaper has come as long as I can remember and I am pretty sure before. When we first moved here the daily paper came in the mail and we were on a rural route. The Sunday paper was delivered though.

My grandparents lived across the driveway from us. They taught me to read using the Sunday paper. My grandmother in particular would read the Sunday comics with me (not to me). I could read quite a bit by the time I started school. My teachers thought I was precocious but really I just had good parents and grandparents.

In the evenings, after work and outside chores and supper dishes were done, Dad would sit in his chair and read the paper. He read it from cover to cover and every article. He even read the classified ads. I know he enjoyed it but I think he also felt it was almost an obligation. As with so many other things in his life he retained that habit up until just the last few years. But he hasn't read the paper in a while now.

Used to we would sit at the little breakfast nook table and read the obituaries together while we were having our coffee. Mom and dad liked reading the obituaries and sometimes knew someone. I was a bit upset when I started reading them, too. It just seems such a sure sign that you've arrived at old age. But they are very interesting I must admit. Especially when you compare them to the rest of the news.

Now if I read the paper I usually pull up the Internet version. It's just easier that way and the Internet version is included in the subscription price. That way if I see an interesting article I can email it.

So on Mondays I usually throw away the entire Sunday paper unopened. Dad had a ritual of sorts with the Sunday paper. He would remove all advertising. Then he would tell mom "There is nothing in this thing but ads." Mom sometimes wanted to see the ads though so he didn't throw them away until she had approved.

I usually read the Saturday paper because I like to look at the real estate section. I don't like it on the Internet very much for some reason. My wife and I have been talking about a new home for us someday so I like to look at the house plans and different articles about housing and stuff like that.

I still have the old telephone number, too. The telephone did not arrive here until about 1962 or 1963 as I recall. Before then we would drive to the neighbor's house and use theirs. They were on a party line. When we got ours though it was private.

And the phone is a black desktop model just like the one in the image. It is heavy. It still works. The ringer scares me out of my skin. I don't use Dad's telephone number either. If anyone calls it they get the answering machine. Almost no one does call though. Almost all of Dad's generation that were in his circle are gone now.

There are a lot of things here that are no longer used besides the newspaper and the telephone number. But I keep them all anyway.

Coffee cups and old things

Beth T blogged about how coffee cups trigger her memories and she included an image. It made me want to do something similar. She used the title "Memories" which I agree is better but I decided to keep our family tradition of using simple names but that's a different story.

The plastic cup on the far left is Dad's old cup from his office. I think he was given the cup by someone but I don't recall exactly. It has to be 50 or more years old. He still will sometimes drink his hot chocolate from that cup. It always makes me think of the old office and the coffee bar where we would gather in the mornings. All those people are gone now. But the cup does make me recall them and how much I loved all of them.

The "John Deere" cup next to it I bought for him in honor of his "new" John Deere mower. Once the fellows that farm for us were out in the field bailing hay. They use John Deere equipment. Dad got out on his John Deere mower and mowed the lawn at the same time. I was trying to work then and ever so often I would jump up and check on Dad to make sure he was alright. Sometimes I would sit on the porch and we would wave at each other on each lap around the north yard. Later when he couldn't mow anymore then he sat on the porch and I mowed and we waved at each other on each lap.

The next cup is one my children bought me once for my birthday. It was soon after I came to live with Mom and Dad. It is printed with "Dammed if I do! Dammed if I don't!" which was pretty much the way it was. That cup always makes me think of my children and their gift on that birthday. I love my kids.

And the far right is a cup I bought in Australia in 1992 for my mother but she never really liked it. She preferred little thin China cups. So I adopted the Australia one and it does make me think of that trip when I use it.

While I am doing images this is one looking south at the pasture. I am older than that old Elm tree in the foreground. Left of it and in the background is an old Hackberry and it is older than I am. It was here when I came and I was only 3. It has not changed much since then.

Once during a storm a few years ago a limb from the elm fell and broke the railroad tie fence. A photography student from the University of Oklahoma came by and wanted to take a photograph because she thought it kind of captured a broken down look she told me. I thought it captured a right after storm before I could clean it up look but I let her take photos anyway. She was oblivious to the fact that she had said something insulting. City people are like that though.

There is something interesting about coming back to a place and realizing that you are one of the oldest living things there. I think it would have been difficult to appreciate that feeling before I was 50.

The railroad tie fence dates from the late 1960's as I remember. This place was a great place to live a childhood. Dad and Mom built something of great value here. My brother came out not too long ago and just walked across the pasture for a long while. I knew what he was doing because I've done it myself. Living on a farm connects you to the land somehow.

Yesterday dad was able to get up and go down for breakfast. He ate lunch in his room. He wouldn't eat supper. He stayed in bed all day until night. After I went to bed I heard him get up by himself. Later I checked him and covered him up. I think we may make it to the porch today.

Maybe it is me

There have been any number of times that I have questioned myself over the years.

Once Dad and I were standing in a parking lot and his home of 50 years was clearly visible. Dad had no idea where he was and could not point out his home. But a few hours later the water quit running in the house. Dad knew immediately that the cause was the filters on the well and also knew exactly how to replace them. I thought maybe I had just imagined him not finding his house.

Take his collection of used (but well rinsed) ice cream containers. He explained he might need them and they were just too good to throw out. I could understand possibly needing one or maybe a dozen. But a few hundred?

I have to admit he kept them neatly stacked and organized. That level of organization and even his ability to argue with me made me wonder. He was so logical and methodical - and relentless. It actually made sense to me for a while that we should have hundreds of empty ice cream containers. In hindsight I wonder about myself.

Then there would be the occasional visits with friends and family. Usually if they were dad's friends I would try to be quiet and out of the room. It was, after all, his home and his friend and not mine.

The friend would invariably talk about old times and would provide the context and the details of whatever event. Dad would join in with generalities and assurances that he certainly did remember. And in the early days he would laugh and smile and be every bit the charming host.

Only I would realize that he knew nothing about the subject. But the friend would tell me as he left that he really didn't think there was much wrong with dad. Maybe it was all just a mistake after all.

And sometimes I was just like the friend, too. Because really one doesn't want to believe that Alzheimer's or any other dementia exists. I think because if it really doesn't exist then I can't get it. So it isn't so hard to lose objectivity.

I was reminded of those times today because he was so much improved. He could stand and even walk a short distance unaided. He fed himself and used both hands. He did sleep all day. But the improvement made me wonder if we had just imagined the weekend and it really never happened. Or maybe somehow I was in some other dimension for a couple of days.

I wonder if we will ever again sit on the porch together. It does not seem likely now.

I reported all that had happened to my hospice nurse though. She thinks the disease is just progressing. She is always very encouraging and tells me we did all the right things and so on. And the personal aide came and the chaplain. And they both were very encouraging.

I will tell my brother. He was afraid that dad might die Friday night. I want to be with dad when he dies. I think my brother wants me to be with him, too.

The nurse thinks he will probably continue to sleep more. I am not sure it is possible to sleep more. I know I will have to watch for the pressure sores.

She told me to feed him only as much as he really wanted. That's not hard because he may be weakening but his determination and will are still as strong as ever.

She said there would be ups and downs.

I have that part down pretty well.

What's In A Name

I started this on Sunday and now finishing it early Monday morning. Sorry for all the words - kind of got away from me.

It is just before 5 AM Sunday (8/12/07) morning. I have just finished changing dad and decided to blog a few minutes which now is the better part of an hour. Is blogging really a good thing?

Suddenly Dad hollers out my name.

My heart leaps to hear him say my name. And because it is so sudden and unexpected it frightens me a bit. I rush to him but all is fine and I kiss his forehead and tell him I love him and everything is alright.

Then I think about the pleasure, the exhilaration really, that comes from knowing that he still knows my name.

I cannot help but think that The Lord knows my name. That is too wonderful to imagine that I am such a tiny, insignificant part of His creation and yet He knows my name.

Afterwards I went to the exercise room and got in 70 minutes total on the treadmill and the elliptical machine. I hit 700 calories for the first time this cycle. That's really good for me.

Dad still could not feed himself this morning but he did eat and seemed to have more appetite. His left hand still seemed better than his right. I decided I could go to church so got ready. Dad wouldn't let me change him before I left. He clutched the covers with both hands and held on for dear life. I instructed my aide about lunch and headed out.

Returned about 1:15. Aide had been unable to feed him and reported that he slept the entire time I was gone. I woke him and got him changed. He was much improved and could keep himself erect although I had to help him stand. He was able to shuffle to the recliner with my help.

He was able to hold the spoon with his right hand after I helped him find it. He was pretty shaky but he wanted to do it himself. Took a while, too, but I know he wants to do for himself as long as he can. It is one of those things that would be easier for me to do. He could hold the Dixie cup with his left too.

He wanted back in bed as soon as he finished and I helped him. He was out soon after. It is amazing to me how much he is sleeping.

He refused anything else at supper so I waited a couple of hours and finally got him to eat some low sugar ice cream, applesauce, and some juice. His right hand would not cooperate at all. I fed him.

At bedtime I kissed his forehead and told him I loved him. And he said "I love you, too." Melted my heart. I believe that's the first time I've heard that.

End Stage Symptoms

Saturday Dad was unable to stand without assistance and then only for a very short time. He could not walk without me holding him up. He cannot sit erect without me holding him. This is a continued deterioration of what I saw on Friday.

He mostly did not answer and when he did it was yes or no and pretty difficult to understand. I believe his face may be taking on the "mask" appearance. Mom's face kind of did that toward the end.

He cannot make his hands do what he wants. He could eat a cookie with his left hand if I placed the cookie in his hand. He could not do that with his right hand. I had to feed him and he ate less than half of what has been normal.

Strangely enough he seems to be losing weight almost as I watch.

He did not understand how to use the straw until I kind of primed him with a taste of juice from the straw. That seemed to trigger his memory to suck. My mom could not remember how to use the straw at the end.

I am not giving him very cold stuff because I think his teeth might be sensitive.

I did not mess with any of the drugs except neurontin. He is not running temperature. Since they could not get him to eat anything Friday night this is 2 days of skipping the Aricept and Geodon.

He slept and slept and slept hard.

I sat with him all day except for my exercise time.

Some of these symptoms I have seen before. Most recently he was unable to walk or stand unassisted in January and February and most of March. There was a time when he could not feed himself for about a week or two. But all of them appearing together and so suddenly to me seems ominous.

So I do not know if this time is different. It seems so strange that Thursday he was still walking and then Friday he was not.

It is 4:30 AM and I have just changed him. He can still push down with his hands against the bed and stand with help so I will stay with the pull-ups. I think the exercise of standing and changing position is good for him.

I will have to decide in the morning if I will go to church and how long I will be gone. If these symptoms persist through Sunday I will visit again with hospice on Monday.

Rescue

Dad Update:

Friday nights I try to spend with my wife. So I return here Saturday mornings. Friday night he would not eat anything for the aide or my brother and was mostly not communicative. When I walked in this morning he was in the stiff position kind of half sitting and half reclining. He would not or could not talk to me. I had to physically lift him off the bed to change him. He resisted but finally stood enough that I could get the Depends off and the gown off. I moved him to the recliner while I made the bed and got the laundry started and so on. He would not drink juice by glass or straw and I ended up giving him juice and some yogurt by spoon. Took about 2 hours. He has virtually no fine motor skills with his right hand. He is able to use his left some. Got him back in bed and he's happily sleeping away.

Rescue:
I was thinking about the rescue effort for the 6 miners trapped in the coal mine near Huntington, Utah.

There are hundreds of men and women involved in the rescue. These people have specialized skills. They are risking their own lives. Millions of dollars worth of equipment and other resources have been mobilized. There are other hundreds of people at the site in various capacities including many reporters and camera crews. And many people across the country, maybe the world, are praying and watching cable news for any word.

All this effort is for the sake of six persons who may or may not be alive. Astonishing really. If we did not value human life as we do, then we certainly would not risk more lives than we are saving. Even if it were only one life we would do the same thing if we could.

It may be that the miners are not alive. As I write this it is still unknown. Regardless though the attempt to reach them will continue.

I was thinking how the rescue effort is like caregiving, especially for Alzheimer's patients. Except we caregivers know that the patient is not going to survive. There is no question. But we mobilize tremendous resources for our patients. We put together large teams of providers. We jeopardize our own careers, relationships, and health to care for our patients.

This astonishing respect and valuing of life is one of the more noble qualities of our humanity.

Noble as it is though it is not all that common in history. Life, or at least some life, has been remarkably cheap and disposable for much of our recorded human existence.

Night Life

3:10 am

Dad is up. I hear him even though I am in such deep sleep. I jump up. There is something wrong. I shake the sleep from my body but it does not cooperate and I have to catch myself on the bed as I find my moccasins. My mind is ahead of my body.

He is at his door. He is so stooped over. There is the shaking in his leg. His gown is wet, really wet. I glance at the bed. The pad is wet but not the sheet so I throw the pad on the floor and replace it on the bed with a new one from the stack.

I untie the gown and get it off him. He is so bent over. My heart aches and inside I cry out to the Lord. My poor little dad.

I pick up a new depends and a pad and pull on the gloves. I have to help him back towards the bed and I stop him at the little chair. I begin changing - now almost a ritual form. He is not able to help me much. The shaking is worse and the stiffness is much worse.

I think "Is this the disease or the drugs?" because I've seen something like this before with other drugs. Then again I've seen something like this with the disease, too. The drugs haven't changed. But then again the Risperdal took a month and a half. Has it been that long for the Geodon? I don't remember.

Now we're moving back towards the bed. The shuffle step is so pronounced now, even worse than yesterday. His left leg fails him and I am almost carrying him now. I think he is losing his ability to walk. I remember the other times like this.

My mind is racing ahead in the future now. How to work with him when he can't walk and can't stand and on and on.

He's back in bed now. He is so stiff. He seems hot.

I'm burning up myself - why is it so hot? Is the A/C working?

He will not or cannot speak. I don't know which. His temp is 98. He will not lay his head on the pillow. How can he hold his body that way so rigid with his head up and his feet pulled up like that? But I've seen this before. It will not last forever.

He is as comfortable now as I can make him.

3:35 am

I glance at the clock on the DVD. I want to check the cable about the miners. I am so hot. I check the thermostat and it is 73 but I am burning up. Turn on the overhead fan. Can't sleep so open the laptop. Check a few forums. There are others up on the Alzheimer's forum. But I don't post. I am alone.

3:45 am

I climb in bed. Finally I am cooling off some. I twist and turn. I can almost sleep but not quite.

4:35 am

Out of bed and start this blog. Check the cable again. Finally Fox reports and CNN a few minutes later. The smaller drill has arrived at the chamber and the air is good and a microphone has been lowered but there are no sounds. Happened hours ago I guess.

4:45 am

Dad is up again. Get him back in bed. He is so stiff still but walking a little better.

5:00 am

Back in bed - trying to sleep.

6:30 am

still in bed but heard dad twice

7:45 am

Finally getting up. Dad's awake. Will be interesting to see what he's like this morning.

Change on a dime

Wednesday Dad was so weak. He would not eat breakfast but I managed to get him to heat lunch and supper but not very much.

But Thursday he was hungry and was easily able to come down with me for breakfast and then sat with me on the porch until nearly noon. He was much weaker by then and the shuffle step was so pronounced. But otherwise he was very alert. He even let the aide shave him enough to get rid of most of his mustache but not the rest of the beard.

The nurse came about 4:30 pm and I took his temperature for her. He was 98.6. He greeted her and she said she thought he remembered her. He has no clue who she is but I guess it doesn't hurt anything for her to think that. Strange how people want to be remembered even when they are knowledgeable about the disease.

Suddenly during supper he became really fidgety and his hand began shaking to the point he could barely hold his glass or his spoon. He felt hot to me. Sure enough he had 101. So in 2 hours his temp goes from normal to 101. Later it hit 102.

But by bedtime it is coming down. He is resting now.

Just amazing.

How Strong Am I?

I recently read Twice Blessed's post dealing with strength entitled Strength...God's Gift and it made me think enough about the subject that I wanted to explore it myself.

People are always telling me how strong they think I must be and how much they admire what I am doing and how they could never do it themselves. Sometimes what they tell me is actually insulting even though they never mean it that way.

There are different kinds of strength of course. There is physical strength which itself can be of several kinds. Endurance for instance is different from lifting great weights. There is mental strength which might be measured by IQ or by various other tests depending upon the context. For instance a good sales person might have intelligence that is much better for selling things than the stereotypical science nerd. There is emotional strength which has to do with preserving (or developing) one's own character. Spiritual strength has to do with preserving one's faith, that is preserving and developing the most fundamental preconceptions about the source and meaning of life.

My self-image contemplates all of these aspects of my life and probably even more. The experience of living is continually testing and changing that self-image.

For instance when I was a young man and just entering the army I thought I was very physically strong. I thought I could endure just about anything. But my army experience taught me that my physical endurance had limits. Many early business successes made me believe my business acumen was almost limitless. Years later I found out that wasn't true. Either way the self-image is adjusted to reflect the lessons of living.

Caregiving is a life experience which tests, and thereby develops, all of the basic areas of strength. It can be extremely physically demanding. It challenges the best education and intelligence. It is emotionally difficult. And it definitely makes one question philosophy and faith.

Strangely enough, or maybe not, my life had actually prepared me to be a caregiver. By the time I started I had learned to live alone. I had learned that all relationships are temporary. I had learned that I could survive any number of difficulties. I had learned that I was not perfect but that it wasn't required. I had learned I needed help and not to be afraid to ask for it. I had learned that having purpose is a good thing. I had learned that God was faithful and trustworthy.

Even so caregiving was challenging from the onset and I have learned many things both about caregiving and myself.

Strangely enough, given the title of this post, I do not view myself as particularly strong at all anymore. I think it may be because I have bumped up against so many of my actual limits. But it is those times when whatever I am doing requires more than I can actually deliver that The Lord somehow provides for me. I do not know how this works and it is beyond my ability to describe it really. Nonetheless it has happened again and again and I know it will happen in the future.

But it isn't my strength. Rather it is His.

What A Difference A Day Makes

I slept straight through seven hours and then another couple for good measure. So I feel better.

When I went to bed last night Dad was pretty happy and was even reading some of the news banner on the cable TV to me. He kept moving his foot under the cover and I finally figured out he was trying to tell me he was hot. What he said was a variation of "I can't get out." I don't really know how I know that he meant he was hot. So I removed his blanket.

I checked him when I first arose and since he was asleep I headed for my exercise room and got in nearly an hour. I was surprised to find him up when I finished. He was really upset and angry and would not speak except to tell me to "get out of here." I finally managed to get him changed and the bed made. But he wouldn't eat anything. I got a little juice down him.

I think he's hurting but it is only a guess.

I am about done with my normal 2 loads of laundry and sitting on the porch a minute by myself before I try to get him to eat some lunch. He was fast asleep the last time I checked him so I will not wake him.

A friend called this morning and told me about his father-in-law who has Alzheimer's. He was kicked out of 3 homes and had actually entered hospice care. My friend told me this morning though that the new doctor had removed 5 drugs and the man has had a dramatic change and even now remembers my friend and others in his family. Undoubtedly the drugs had caused problems that were mistakenly blamed on the disease.

The weather forecaster says we might hit our first 100 of the season today. It is unusual that we have been spared so long.

I feel really bad for the miners trapped in the mine in Utah and their families. I am praying they are okay.

Bad Night

It's 3:00 AM and I am wide awake. I am hot. I have to get these covers off me.

It isn't Dad's fault at all. He isn't even awake. I don't really know why I am awake. I know I've been having bad dreams but I don't remember anything about them. Only that there was turmoil and chaos and so much struggle. I am worn out from the dreams.

The bed is not comfortable so I get up and sit in the chair and reach for my laptop. I read the forums and the news sources and work a little on a project that I am so far behind on anyway. I post once.

Finally, again my eyes begin to grow heavy. I can sleep now. The bed is comfortable again. Strange I feel cold now and I cover myself.

When I awaken I will not be rested and the day will be hard for me.

I am so glad I don't have these often.

A lot of cognition there

That's what the hospice folks tell me about my dad: "There's a lot of cognition there."

They are talking about his over-the-bed tray table that sits beside his hospital bed. On that table he now arranges and rearranges the small collection of items he now counts has his own possessions. Sometimes he places a few of them under his pillows.

He now insists on 2 pillows. I don't really think it looks comfortable and, of course, I remember the almost flat, filthy pillow that I finally was able to get away from him. It almost made me sick to touch the thing. It was practically a thin board. But if he wants 2 pillows and they make him happy then more power to him.

On his table there are 4 tooth brushes, 3 combs, 4 greeting cards that have his name on them, a funeral program, and a little plastic skull keyring that came from a box of cereal. The little skull when moved blinks a little light. He used to have 5 tooth brushes but one was so nasty I could not stand it. Two are his and one is mine and two he stole from my wife's dressing area in our bathroom. He likes to steal her things. She isn't here too often but the last time I had to find her makeup mirror which had temporarily joined his collection. He is especially partial to the new OralB battery powered tooth brushes.

The 3 combs are all his. He sometimes combs his hair and actually does a good job of it. The greeting cards are from Christmas and he likes to read his name on them. Sometimes he opens the cards and reads the part where his name is. Then he repeats this ever so often. The funeral program he opens and inspects and is especially interested in the photograph. I do not know if he remembers this friend. But he does seem to enjoy something about the program.

There is also a little toy airplane. He flew airplanes in World War II. I think he keeps the little plane because it does remind him of something but I no longer am sure what.

He spends a good deal of time laying these things out on his table and arranging them in some kind of order.

It is this activity that the hospice people find so interesting. They seem to think this is indicative of some significant and unusual amount of cognition. Especially they say in the planning area.

I think it is more obsessive-compulsive and I am not nearly so enthralled with it.

In some ways it reminds me of listening to people argue about whether animals think and and have emotions and personalities and so on. I always think these people that take the negative should get them a herd of cows and work with them for a while.

Dad came down for breakfast this morning. The little breakfast nook is on one side of the kitchen and the cabinet between the two rooms is open so we each can see the other. He watches me put together the various parts of his breakfast in what I can only describe as rapt attention. Occasionally he even stands and walks toward the tray and returns to his seat when I tell him I am just about done.

There is something about this that reminds me of a dog waiting for a treat. I know this sounds awful and I do not mean it to be disrespectful in any way. But this morning it actually made me laugh watching him. It is actually kind of sweet and innocent although I admit that if I let myself dwell on it that it becomes dark and foreboding and depressing.

And then when finally I serve his breakfast he becomes so focused on eating what I've prepared. I think it is close to obsessive-compulsive. He doesn't really smile or do anything that makes me know he is happy exactly but it just seems like he is happy. It makes me happy regardless.

Last night when I was remaking his bed for about the 100th time I unfurled the blanket in one motion and it landed so perfectly on him that he actually gave a little laugh. That's unusual. Made me laugh, too.

Is This Living?

This was a question posed not long ago on one of the Alzheimer's forums I visit. The person who posted described some of the devastating symptoms of Alzheimer's and how much those same symptoms diminish the life of the patient. The poster wondered whether the resulting life was so diminished that it could be even called "living."

As so often happens to me this post made me think about what I fundamentally believe and how I would answer this question.

I remember not so very long ago when I wondered about my own life. I wasn't physically ill. But in the span of a few months I lost so much that I thought had defined my life. In the midst of grief and struggle and pain it is easy and natural to question whether life is worthwhile.

But the strange thing is that many people also question whether their life is worthwhile in the midst of ease and plenty.

Every age group is susceptible to suicide, too. Sick or healthy, male or female, genius or dunce, white or black, religious or not, all groups seem to have suicides.

Alzheimer's is a terrible disease. But there are not very many good diseases. Diseases are different. I have seen people suffer and die. In fact a lot of the people I know are dead now.

I was thinking the other day that only a few of my family are on this side of life. Most of them are on the other side.

I was wrong when I grieved those things I thought I lost in my life. I was wrong because I conceived of life as "doing." Oh, I was not totally wrong because doing things is a part of life and it is not wrong to miss the doing.

Fundamentally life is about being.

The Fountainhead

Last night (Friday) we watched the old (1949) movie, The Fountainhead, with Gary Cooper and Patricia Neal. The movie is based on the 1943 novel by Ayn Rand who also wrote the screenplay.

The title is from Rand's statement that "man's ego is the fountainhead of human progress".

I remember the movie from my childhood. But I was a little disappointed by the movie because it did not seem as good to me now as my memory recalled. But that's not unusual. I have had similar disappointments with other memories.

Later, when I was a young adult, I became interested in Rand's philosophy and was very impressed with her novel, Atlas Shrugged. I was an atheist then.

I know Rand would not approve of my faith. She was adamant in her atheism. She would certainly not believe in my contention that I have been called by God to be a caregiver.

On the other hand I think she would rather admire my stubborn perseverance to serve my own ideals and standards.

Gary Cooper was the perfect choice to play the heroic Howard Roark character.

Then we followed the movie with Dr. G Medical Examiner. We are strange people.

What is my occupation?

There was a post recently on the Alzheimer's forum entitled The Top Ten Things Caregivers Do Not Want to Hear

I have one to add it: What is your occupation?

I haven't known how to answer this question now for a long time. It always flusters me some as I struggle to arrive at an answer. I know what they want. They want to know what I do to earn money.

But I don't earn any money. But if I answer that way then they either assume I am retired or disabled. They might think I am independently wealthy except I don't really look independently wealthy I guess. I never really want to say that I live on the magnanimity of my father.

If I do say I am a caregiver I usually modify it to be "family caregiver" so as to distinguish between paid caregivers. I definitely support the idea of increasing the professionalism and career opportunities for paid caregivers. They, after all, do get paid and need and deserve every dime.

Now that I think about it I could add another question, too: Do you own or rent?

I don't own nor do I rent. Then someone says "Well, where do you live?" to which I answer "With my father in his home."

Having neither job nor home makes it hard to get credit, too. And it is not beneficial to one's social security benefits either.

There are benefits. You don't really need credit since you don't buy anything. You don't owe a lot of tax when you have no income. I don't drive many miles and the price of gas doesn't bother me. I noticed today in the last 3 years I have managed to put 18,000 miles on my car. That's because I was married in 2004. From 1998 to 2004 I drove about 12,000 miles.

Also, I do not need a very large investment in wardrobe. Entertainment is pretty inexpensive.

Wild and Crazy Guy

Tuesday evening at one point Dad's behavior was so strange. It was after supper and he would not lie down nor would he sit in his chair. He would not answer me. He took one of his old greeting cards and hit my arm with it which was just his way of telling me to let him be.

So I sat in his chair and watched him. He would almost doze off sitting on the side of his bed. Sometimes he would lean one way and sometimes the other. His leg would occasionally twitch or tremble. I have noticed some trembling when he is standing, too. I wondered at the time if it might be a drug reaction. I wondered if it might be that his dreams were too frightening to endure and so he didn't want to meet them again in sleep.

No fever at least so I guess he is over whatever caused the fever in the first place. It will return.

I felt so sorry for him that I tried to encourage him to recline on his bed by gently pushing him towards the pillow. His eyes got that really wild look and he kicked and hit at me. So I withdrew and he yelled at me as I was leaving.

This is not the first time I've witnessed this and I am pretty sure it will not be the last. But sometimes it scares me that one day there will just be some sort of total break and he will be entirely lost in madness. I pray that does not happen. I know I can deal with it if it does but Lord I do not want it to happen.

Then I wonder about myself. Will I become mad like this some day?

I know so well that there is so little that separates sane from madness. It isn't exactly a thin line. There's a lot of shading of sanity. But there is a precipice and once over the edge I think the chasm is unfathomably deep and wide. That precipice frightens me.

But by early Wednesday morning everything was back to "normal" and Wednesday was a nice day. No fever. We sat again on the porch.

Only really bad thing was that my wife came over to take a nap before church and dad picked just this time to want to be my shadow. It would have been nice to have spent a few minutes alone together.

Today is my lunch day with my lovely bride. And I have an appointment to get some car work done. A benefit of caregiving is driving very few miles.

What's for Supper

Dad now has my choice of the following main dishes: Shepherd's Pie, Bolognese Meat Sauce and Pasta, Different Twist Pork Stew, Tuna Casserole, and Chicken Pot Pie. In addition he has Chocolate Buttermilk Brownies and Frozen Fruit Cups for dessert.

All are low or no sugar and low sodium, too. They are soft and easy to eat with a spoon. The individual portions are easily prepared, too. I asked her to prepare these so that each main dish had meat, vegetables, and starch.

They are not pureed as Dad still can chew some. But it is becoming increasingly difficult for him, so this makes it easier.

Tuesday evening I served the Tuna Casserole and a Frozen Fruit Cup. Both are quite tasty. The Frozen Fruit Cup is about the consistency of pudding. Both are kind of white in color. I think that's good for Dad although not very appetizing to me. Dad enjoyed both of these dishes. I don't really know how much he actually tastes now. But some things he does not like and will not eat. He cannot eat hard cookies any longer so I experimented with various soft cookies. He prefers the Fig Newtons and Strawberry Newtons for reasons I cannot ascertain. Maybe he does not like chocolate so much because he definitely did not like the soft chocolate chip. And that's a good thing because I found myself a little too enamored with them.

He is beginning to have more trouble feeding himself. He now holds his spoon very awkwardly and has a terrible time getting the contents actually delivered to his mouth. And I notice his hand trembles a lot now when holding the spoon. About two years ago he lost the ability to feed himself for about a week. It was similarly a problem with the hand-eye coordination. He just could not make his hand work. I was surprised and very upset when it happened. But his frustration and grief certainly overwhelmed mine. Then suddenly he began feeding himself again. This time it seems the deterioration is slower but steadier.

One kind of funny thing we go through is in positioning the tray and plate. I want it closer to him so as to more limit the mess. He wants it farther away. I don't know why he wants it so far away. Maybe because I want it closer.

There are 3 places we normally sit to eat. One is the little breakfast nook off the kitchen. This is my favorite place. We look out the north window and can watch the traffic at the corner. Dad yet sits in his usual place which is directly opposite the window. This has been his place now for 43 years. My place was directly across from him with my back to the window. My mother's place was to dad's right and that's where I now sit. It is the best place for accessing the kitchen and dishes and so on. When my brother comes he sits in his old place to dad's left. That was also my son's place when he lived here and that's where he still sits. It is funny how we take up our old places.

We also eat in his bedroom. I have an old card table there. It is Samsonite and I remember vividly when by mother got it. I think it was with Green Stamps. I bet not too many people younger than me remember Green Stamps. So if he can't go down to the breakfast nook then I try to get him to the little card table. And if he can't do that then I use the over bed table. He will sit up on the side of his bed though.

In the breakfast nook it is still the same round table and the same wooden chairs. I have to kind of pick up dad's chair and scoot it forward for him now. Before January 1st he was able to scoot himself. I remember doing this for mom, too.

Breakfast and lunch are always the same. Dad has long enjoyed cold cereal for breakfast. He liked to "mix" his cereals. He remarked about it several times after I returned and I always thought it was kind of funny because he seemed to think he was doing something rather exotic. And I suppose it was given his upbringing. So I mix Cheerios and Rice Chex for him. Then I add fresh banana, fresh strawberries, low sugar yogurt, and soy milk. He drinks low sugar juice. Lunch is a really small turkey sandwich, applesauce, Strawberry Newtons, and juice. Our "coffee break" is low sugar hot chocolate and a Strawberry Newton.

I use low sugar Cranberry-Grape juice. Dad just will not drink water so the Cranberry juice, applesauce, and hot chocolate have to suffice. I use soy milk because it will last almost forever. Otherwise I have to throw out stuff and I hate that.

I caught up all my laundry on Tuesday and got my groceries put up and managed all my other stuff. I showered and dressed up but didn't quite manage to shave.

Wednesdays are days when no one is scheduled and I'm very grateful.