Tuesday, July 31, 2007

Personal Chef , Personal Shopper

Today I am expecting our new personal chef to come and prepare a month's worth of dishes for dad. This is an experiment more than anything else I suppose. He is requiring softer meals now and I just don't want to (or can't - not sure which) do it myself. So we found this young woman who has started her own business as a personal chef. She interviewed me a couple of weeks ago and then proposed a menu. I paid her in advance and then she shops for the necessary food.

She and a helper then come to the house and take over the kitchen and cook for whatever time it requires. The meals are individual servings with labels and directions. I need this since I try to be gone my one evening per week. I am hoping to add a little variety and healthier food to dad's diet. She's making everything low salt and low sugar and soft. We're trying to not be bland though. I'm kind of excited to see what she ends up with.

Dad is still not feeling well and this low grade fever continues. I guess I will call Hospice today and visit about it. I think I must have whatever he has now as I awakened early this morning as dizzy as a loon - whatever that means. I think I may have some fever.

Today is also my grocery shopper day and I think I am supposed to have two business meetings.

I can't believe it is already the last day of July. Seven months of this year already gone.

Monday, July 30, 2007

Sunday Friends

Yesterday I was sitting in church. It was during that time between Sunday School and the morning worship service.

Usually I sit in the same place by a fellow that is about 11 years older. He and I have become friends over the last couple of years. I always look forward to seeing him. He keeps saying he is retiring but he keeps getting just one more job.

I don't blame him either.

Mostly we talk about construction work and trips we would both like to take or have taken and sometimes about being single. His wife died about 3 years ago and he misses her and is lonely. I know that feeling.

Suddenly my cell phone vibrated for an incoming call. That's never a good sign when it happens on Sunday morning. It was my aide and she needed me. So I took my wife's purse to her and told her I'd be back as soon as I could and headed for home.

It's not far. It was a big mess and my aide had cleaned the carpet in the hallway and dad's floor as much as she could but dad wouldn't let her do more.

I thought about changing clothes but decided I wouldn't take the time. My aide said she didn't know where to start and I told her not to worry because I pretty much felt the same way but I'd done it before a few times. I had her wait downstairs. Soon I was done and dad was back in bed and I had my sport coat on again. And 2 more loads of laundry weere ready to do so I started one on my way out. I kept thinking I probably smelled. I kept smelling the odor, too.

My aide just graduated from college and is starting graduate school this fall. I am so impressed with these young people that have come to be my aides. They are just such exceptional young people. They could do other things to make money or not even work at all for that matter. But they choose to be caregiver aides.

I made it back to church in time to meet my wife in our usual spot. It's kind of cool we have a spot. My friend sits on the end and then me and then my wife. Today my wife patted my shoulder after we sat down. And my friend whispered to me that it was awfully nice to be touched like that. I know exactly what he meant, too.

More big messes after I returned home. Dad felt a little warm and I finally took his temperature with the new thermometer I have that you press against the temple. Don't know what I would do without it. Sure enough he is running temperature. Probably was yesterday, too. And that likely explains his difficulty walking yesterday. Don't know when I will learn these things.

Big laundry day for sure.

It's 3:30 Monday morning now. Always hard for me to go back to sleep after a middle of the night change.

Sunday, July 29, 2007

It is so pretty here

It is Sunday morning. I'm getting ready for church and hoping the new aide is somewhere around on time.

Dad is in bed but not asleep. He is talking to the TV ever so often. He was able to get up this morning but could only make it to the little card table. I wondered yesterday if he would be able to stand. I wonder if this is the disease or maybe the meds.

But I'm looking out the window of my room. There is no wind and it isn't yet hot. Actually it hasn't been really hot yet this year. The lawn and the area around the house is so pretty. And the pasture to the south is weedy but still beautiful and still so open. But all around I see the encroachment of civilization. We are an island of open space in a sea of homes and buildings. Soon we will be overtaken by the flood. It is inevitable and unstoppable.

It is so different from what it was in my childhood. I am the oldest thing here now besides Dad and the one old tree. The old hackberry tree must be nearly twice my age I think. But it has not changed much in all these years.

I know I will miss this place. Or is the time I will miss? Maybe it is both because the place and time are inseparable.

Saturday, July 28, 2007


I pray.

Sometimes it is almost effortless and others an awful struggle. Sometimes it is urgent and at others more casual.

Sometimes answers are immediate and obvious. Several years ago dad would mow the lawn with this old Allis-Chalmers lawn tractor. It was nearly 40 years old at the time. I clearly recall when it was purchased. I have a Polaroid photo somewhere of dad on that tractor when both were much younger. But after 40 years the tractor had developed a few problems and when it was built safety concerns were not a priority. One day I looked out the window only to see dad off the tractor and inspecting underneath the mower deck white the blades were turning. I ran outside and turned the mower off and of course had a huge argument with dad.

The tractor broke several times and dad would not even hear of replacing it regardless of my best efforts to the contrary. So I made it a matter of prayer and had a small army of believers praying with me. Shortly thereafter a nearby John Deere dealer advertised their John Deere lawn tractors on sale. I showed the ad to dad with no real thought the result would be any different than countless times previously. But he agreed and my mouth dropped open. I called the dealer and they brought out the tractor the next day.

Sometimes though a prayer is answered and I don't immediately recognize the answer. Just such a time occurred this week. Dad had this growth on his hand. I had it removed by the surgeon when dad had gall bladder surgery a couple of years ago. But it came back and was quite pronounced. I had been praying for some time about the growth. Friday morning I finally noticed it was gone. But I don't know when it left. I was so happy it was gone but so upset with myself that I had not noticed.

So I've been wondering how many other prayers the Lord has answered that I have not noticed.

Regardless the Lord is good.

Friday, July 27, 2007

Where Would I Go?

This question, "Where would you go?", was discussed on a forum not long ago.

Partly my real answer would have to do with time as in how long can I be gone and when can I leave and what else is going on in my life. When I really think about it there are lots of pesky real-life issues that arise. Not the least of which is my wife's preference.

But I suppose since this is an imaginary trip I might as well imagine the constraints away as well. There are several places I would like to visit.

I haven't seen all of the United States yet. Mainly the New England states and the Pacific Northwest. I haven't made it to North Dakota either. I would really like to visit the New England states. I think I would like to start in Boston. That might be a good Fall trip. I would like to stay there for a month or maybe longer. I want to see Maine and maybe stay in a Vermont inn. And just drive though the countryside.

The Pacific Northwest is really appealing to me and all of Alaska. That's a definite trip I want to take. I am not much for cruises but an Alaska cruise is somewhat appealing to me.

I'd like to return to Hawaii and spend more time to visit all of the islands. I would like to have enough time to just really relax a while besides see a lot of the sites. I want to see the volcano too.

And I'd like to return to Australia but also spend more time and go to New Zealand, too. I would like to see Fiji too.

I watched a TV show about a train that traversed the entire width of Canada. That would be a trip I'd enjoy since I have yet to ride a train.

I think my wife would really enjoy a trip to Israel and maybe a side trip to Vienna. Vienna would have to be a music trip since my wife is a musician. I think she would really enjoy that. She deserves to go someplace really nice.

She wants to visit London again and I wouldn't mind touring all of the British Isles as well as Ireland.

Then there's New Mexico that has to be one of my favorite places to visit. I especially like that area around Los Alamos. I would like to hike through Bandalier again - not the overnight ones but the easy ones.

Strangely enough I really don't have much interest in Asia or most of Europe. I don't much care about France or Germany at all. Since I am of German descent it seems reasonable but it has never appealed to me. I wonder if there is a genetic revulsion. From what I can tell my ancestor was pretty happy to leave Germany and France.

Of course I enjoy visiting family too so that's an entirely different trip.

I wonder if I will get to do any of this.

Thursday, July 26, 2007

Phantom smells, sounds, and visions

Of course they are called hallucinations. Phantom smells are olfactory hallucinations and sounds are auditory hallucinations. There are other hallucinations, too.

A hallucination is any sensory perception experienced without a corresponding physical stimulus. An illusion is a misinterpretation of a physical stimulus.

I hear things most frequently. I will be asleep and hear dad holler for me. But I get up and go in there and he is fast asleep himself. Of course sometimes he isn't asleep but I am not always able to tell when he actually did yell for me. Sometimes he is asleep but talking in his sleep, too. I actually have observed that. So some of my experiences may be real. But I'm pretty sure that at least some are not. Sometimes I hear my name or "Hey" or "Dad" or something else.

Once when we first entered hospice I was downstairs at the breakfast nook table with 2 people from hospice. I heard dad holler for me. I looked at the hospice people and told them I had to go back up because dad was hollering for me. They hadn't heard anything. And when I got up there he was hollering for me, too. So sometimes I just can't tell whether or not it is real or phantom.

Next most often is smelling things. I don't know if these are triggered by something else or not. But sometimes I can be sitting somewhere and suddenly I will smell one of the odors I am accustomed to smelling at home. And I will look around and there is just no way that odor is anywhere near me. It happened at church a Sunday or two ago. I even looked around to see if I could find a source. I'm pretty sure it was phantom.

A few times at home I will "see" a shadow out of the corner of my eye. I always think it is my Mom. But of course it isn't. I notice now that this happens much less frequently. I suppose it is because it is so long since she died.

I've read some about hallucinations. The interesting thing is that they are apparently experienced by a huge percentage of the population - maybe near 100%.

I tell you though that there is a lot more concern about them if experienced by Alzheimer's patients.

One of the blogs I read has a quote from Elwood P. Dowd. Elwood P. Dowd is the character from the play, "Harvey", later made into a very successful movie starring Jimmy Stewart. Stewart played Dowd who is the only one who can see this 6' tall white rabbit named Harvey. Harvey is a "pooka" or a spirit according to Dowd at least. I really loved Stewart's portrayal of Dowd.

No point here - just think it is interesting.

Wednesday, July 25, 2007

Waiting, Or Why I Didn't Do This or That ...

No, I didn't exercise. No, I didn't read the paper. No, I didn't get to work any. No, I didn't get the other thing done either.

Why? Well, because I spent the day waiting.

When I got up I had to wait for Dad to awaken. Yes, I thought about exercising then but I hate to get started and then have to stop. Dad is a little unpredictable when he does wake up. Plus I don't want him to be soiled any longer than necessary.

After breakfast I had to wait on the Schwan's man, the hospice chaplain, and the hospice aide. By the time they were all complete it was 11:30 and I really needed a shower. So I locked the doors and got one really fast. Well, if I hadn't gotten the shower then I wouldn't have ever gotten one today. I just know from experience. Yes, I suppose I am a bad time manager.

Then there was lunch and insulin and trying to get Dad to sit with me instead of going back to bed. But finally he went to bed anyway. But then I had to wait on my grocery shopper.

Right now I'm waiting on her to return so I can put up the groceries. My entire day is cut up into these little segments it seems.

Somehow it is hard for me to begin things when I have an hour or less to do them. So I sit here with the laptop and read the news and the forums and do a little blogging. Soon though the groceries will be put away and I should have about 2 hours to do anything I want before supper. Oh, I forgot about the laundry. It is amazing how much two people can create - well one person at least.

At some point I will reflect on the day. I realize now I've left out the UPS man and the mailwoman and a couple of other visitors. And I will wonder what in the world I did all day because really I've accomplished zero.

And then I will recall that most of the day was spent waiting. Waiting is surprisingly hard.

Of course the big wait is also going on. The little waits are just metaphors I suppose for the big one.

Tuesday, July 24, 2007


Dad is a veteran of World War II. But he never saw combat. He, along with so many others, volunteered right after Pearl Harbor. But he was rejected because of an irregular heart beat. He had already quit his job and sold his car so I am certain it was a big disappointment to him. I am also certain it was a surprise to him and everyone else because he was the absolute picture of health. Dad was worried about the results (and I certainly would have been) enough to visit his personal doctor. That doctor told him those military docs didn't know what they were talking about and to not worry about it.

By 1943 the military was a lot less particular. If you had a heart beat you were pretty much eligible and the draft was being expanded. So Dad's friend told him that he would help him get into the Army Air Corps if he could manage to get enlisted. Dad told about going for a physical the second time and the old doctor who examined him had him run up and down the rather numerous stairs in front of the armory. Then he listened to Dad's chest and said "There's nothing wrong with you" and so began Dad's career in military aviation.

He recalled taking a train from Oklahoma to Miami, Florida. The train was coal fired and the cars were equipped with wooden benches. The soot would blow through open windows and everyone was grimy and terribly uncomfortable. At meal time they would receive box lunch meals from whatever town they were in. Still that was his first big trip to anywhere outside of Oklahoma and he always recalled it with a certain amount of awe and wonder. Pretty heady stuff for a country boy from rural Oklahoma alright.

In the Army Air Corps he was trained on B-25's and B-26's. I remember seeing his wings when I was a child but I think they must be lost. He probably would have been sent to the pacific theater for the invasion of Japan if it had not been for the dropping of the atomic bombs and the war ending.

When he returned home he still flew for his boss from time to time. He flew to the Rio Grande valley several times and north to Chicago at least once. He told great stories about flying during those times just after the war.

Later after I came along he sometimes talked about buying an airplane and making a runway on our farm. But he never really was serious about it. He many times remarked about how in the army they had an entire crew of people to make sure the planes were maintained.

Once when I was in college my friend took flying lessons and soloed. I asked dad if I could go up with my friend. Dad asked me how many hours he had. I think he had about 40 and I told Dad that. Dad had hundreds of hours - maybe thousands - so he didn't think 40 was very good. But he let me go anyway and I made it back in one piece.

Dad always admired and respected those who served in combat. He wuld have gone himself and tried to in fact. On the other hand he never really wanted to go to war and I think he never regretted missing combat.

Once when I was a little kid he took me to a place where there were many old airplanes. I don't know what kind of place it was exactly or even where it was. But I remember him lifting me up into the cockpit of some plane. It is funny what we recall.

When the doctor came to the house to diagnose dad I was shocked that he no longer was able to remember the stories from his army days. Stories that I had heard all of my life and in some ways knew as well as he did. But they were gone.

Monday, July 23, 2007


There's been a show on TV recently that carried this title. It's a bunch of people trying to save the world but every episode comes right up to the point of success but it is snatched away at the last minute. So you have to watch the next show to see what happens except you already know it is never going to really end.

There are some interesting similarities between that series and caregiving and Alzheimer's disease for that matter.

But I've been thinking about heroes lately.

Firefighters are very much respected and appreciated people I think. If a firefighter rescues someone, and that happens frequently, then the rescuer is very often honored and called a hero. And firefighters are different from police because firefighters basically only help you whereas you might get a ticket from police. Firefighters were really seen as heroes after 911 because of their extreme sacrifice. I cannot even imagine entering a burning building. Just amazing bravery.

Police officers, doctors, nurses, emergency medical techs, and just ordinary people often are recognized and honored because of especially courageous and valiant acts of self-sacrificing service.

Military personnel who perform above and beyond what anyone might expect are also acknowledged and honored.

In the military and many other organizations the process has been ritualized. Some would say even trivialized to some extent.

There are also organizations who honor their own members for especially notable achievement. Authors and actors and many others do this.

But I was thinking of caregivers and Alzheimer's patients.

I have met (electronically for the most part) some remarkable people doing absolutely astounding things. Heroic things in every sense. Things that are the epitome of self-sacrifice and dedication and yet performed with utter humility. Things that have been performed over and over for years and decades and lifetimes.

And yet, insofar as I know at least, there is no public recognition. In fact there is precious little private recognition either. Frequently the closest family and friends abandon both caregiver and patient.

I suppose in part this is because we do not really want to think about Alzheimer's disease. It is one of those things that is a little too close for comfort for most of us. So, many times, it is just easier to avoid the subject.

It is natural to think only of the caregiver as being the hero. After all they are the ones more obviously sacrificing themselves for their loved ones.

But I watch my dad's daily struggle with his illness. Sometimes I actually am aware that something has changed with the disease and it has invaded some other aspect of his life. Then I watch in awe when he responds to whatever it is. How does this happen I ask myself? What is the source of this cognition that permits him to do this? How can one lose so much and yet still be able to do other things?

I wonder if I were him whether or not I would just surrender. And yet as I even allow that thought I realize that surrender is just not a part of dad's personality and never was. His generation has been called "the greatest generation" and part of the reason is that so many of them possessed that perseverance trait. I suppose it too will eventually be destroyed by the disease but I know it will not be taken from him easily.

More often than not the caregivers are heroic as well though. They struggle against unyielding and insurmountable diseases. They know the outcome beforehand. It isn't in doubt ever. And yet they, too, persevere.

Oh they give here and there when they must. They are neither stupid people nor are they foolish. Even when they have to place the loved one in a facility then many continue to spend the bulk of their time with their charge. They are there until the end.

Both the loved one and the caregiver are heroes in my book.

Sunday, July 22, 2007


Saturday mornings after my Friday night out are kind of bittersweet.

The transition begins when I arouse myself from the bed. It is my only relaxed sleep all week. I feel so good. It has been 18 hours or so now since I was a caregiver. Well usually not that long really but mostly.

I want to stay here a little longer. But I am awake. I know it is the inertia that is holding me. I have to break free and I do.

It is almost ritual that I practice in leaving. Soon I'm kissing her face and touching her skin and whispering "I love you" and smiling that she seems so peaceful and happy. And my heart wants to crawl back in bed to lie alongside her again.

The grief is momentary and I'm in the car and moving towards dad's home. I notice it is slow at first but my speed gradually increases. Does it mirror my emotion?

I stop for fuel at the same place. For reasons I do not understand I enjoy this brief time to refill my car. I notice the price. I am grateful I drive so few miles every week. Or am I really grateful?

Now I am visiting my brother a few minutes. I walk him out. I don't want him to leave so quickly but I don't know that until I think about it later. But he has things to do and his own family to see.

The porch is open and I enter it and move to my place. And now I am alone again. I know I need to go help dad. I know there will be a mess. I do not know how he will be - happy or angry - know me or not. I sit here a while and read emails and glance at the forums.

Again I know it is the inertia that is holding me. I have to break free and I do.

Saturday, July 21, 2007

When the porch is closed

Fridays are my out-over-night days - sometimes at least. But not always. So Friday mornings are pretty busy getting ready to leave plus the normal stuff.

Usually I try to have Friday lunch with a friend so I also have to leave time for getting ready - not that it requires much time mind you. Getting in the shower is a certain trigger to make someone visit in person or by phone. It always amazes me that I can sit here for many uninterrupted hours and yet my 10 minute shower seems to occur coincidentally with a dozen interruptions.

Often on Fridays I do not open the doors from the house to the porch.

Dad is usually coming down for breakfast now. He doesn't always. I don't know why. There is no pattern. But when he does come down then usually we will go to the porch afterwards. Not always though. Sometimes he wants to go right back up to his bed.

I try to help him on the stairs. But he doesn't like me doing it. He fights for his independence in every task and gives nothing up easily. His struggles are in a way quite heroic I think. Mom was the opposite. When the insurmountable occurred she resigned. Both are equally difficult for me as a caregiver and a child and a friend and a companion and all the other roles I lead. And yet I have no idea where the boundary lies between struggle and resignation. I now know that resignation is as heroic as struggle.

My own conflict is between struggle and resignation. Mom was able to die here in her home. That's what dad wants. I am going to try but my naive optimism has been tempered by pessimistic reality.

Already, I am breaking another promise I had hoped to keep. I will have managed to keep it 7 years I think by the time it actually happens. But the die is cast and my decision is right and there is no going back.

Except on Fridays I open the porch so Dad and I can sit there together. Even on days when he goes back to bed I want the porch open just in case he wants to enjoy it. He likes sitting on the porch and listening to music on the old Sony CD player and watching the traffic. He takes little naps but then he will count cars or read signs on trucks or remark about especially big ones "That's a big one!"

It seems strange he can still count and notice size and shapes and things and even read some.

The porch has been such an important place for me even from my youth when the house was built. Always it has been the place for family gatherings. It is surrounded on 3 sides by windows almost floor to ceiling. It is filled with light. As I sit here rocking in the old, springy lawn chair I notice how I am surrounded by relics from my past. (Besides Dad that is!! funny.) It is comforting out here. The A/C is diminished just enough to make it cozy. It feels safe and yet I can see the outside world, too. When we first met my wife and I snuggled in the old chaise lounge across from me. And I look at it and remember that with such delight and pleasure. I miss that time with her.

But even before that it used to be me and mom and dad sitting on the porch. We sat out here after breakfast together for a while and then I would leave them alone and try to work. We would meet again at 9:30 for our coffee break. Then mom wanted a nap and she and dad would go upstairs.

As I think about that I notice that we've moved down one chair now. Dad is in mom's place and I in his.

There is coming a time when dad will not join me here on the porch. I have thought about what I will do then. I don't know really. I think it will be too lonely and sad for me to sit here without him.

I think that's when I will close the porch.

Friday, July 20, 2007

Helping An Alzheimer's Caregiver

Sometimes people ask about helping me and sometimes I read posts on various forums from people who wonder about things they can do to help. That made me start thinking about things that I have found helpful or, by negative example, not so helpful. So I thought I'd start a list:

  1. Bathroom. If you are an aide and you visit my home please try to use the restroom before you arrive or after you leave. Asking me if it is okay to use the bathroom is not the same. What do you think I am going to say?
  2. Bathroom. There's no one here to clean the bathroom but me. So if you do use my bathroom then clean up after yourself.
  3. Toilet lid. And if the toilet lid is up when you go in there then leave it up. If it is down then put it down. Is this really so hard?
  4. Toilet seat. The toilet seat is never up here. It should not be up when you leave. Some homes are different but leave it the way you find it.
  5. Lights. An Alzheimer's patient lives here. If the lights are on then they are meant to be on so the patient will be able to see. Leave them on.
  6. Cleaning. There is no one here to clean anything but me. If you track in mud or dirt or grass then I am going to have to clean it up.
  7. Your problems. I am really sorry your car doesn't work or that your dog is sick or your family member is in jail or you're broke or any of the other problems you are having. DON'T TELL ME ABOUT YOUR PROBLEMS.
  8. Punctuality. If you are supposed to be here at 12:30 and I am going to be gone for 3 or 4 hours then the 15 minutes or 20 minutes that you are late really mess up my entire time away.
  9. Food. I buy food for dad and me. I don't buy extra food. I would rather you not eat my food. Yes, that applies to bananas and ice cream.
  10. Christmas and birthday gifts for the Alzheimer's patient - check with the caregiver first please. And if the patient has diabetes then food with sugar is a bad idea.
  11. Sugar Free Stuff. Some of that stuff gives certain people diarrhea. That's very bad.
Stuff that someone has to do if you need suggestions (and by the way, if you really do want to help with some chores, then remember that it is the caregiver's schedule that trumps your schedule. Don't offer to do something if you can't do it on the caregiver's schedule. Caregivers don't enjoy being beggars.):
  1. Lawn care - it doesn't take care of itself just because someone has Alzheimer's. Yes, that does include weed eating and edging and so on. If you don't have time to do a decent job then don't offer.
  2. Groceries - someone has to buy them and put them up. But it takes a little while to make a list and it is hard to do in a few minutes on a cell phone call when the caregiver is also trying to change the patient's pants.
  3. Meals - that's pretty nice but please check with the caregiver because not all meals are equally acceptable.
  4. Meals - well there are only 2 of us here - and a 5 lb casserole is a bit of a problem.
  5. Meals - uh - I really don't like being responsible for your dishes either.
  6. Housecleaning - really good thing to do but schedule with the caregiver because not all times are equal.
  7. Housecleaning - look - here's the closet that has the cleaning stuff in it - if whatever you want isn't in there then I don't know where it is - you're stressing me.
  8. Laundry - plenty of opportunity since I wash 3 or 4 times per day. However, I have to wash the stuff when it gets dirty. This isn't like a regular house.
  9. Dishwasher, Dish washing - It is amazing how sick I get of putting up dishes from dishwasher. But there again it has to be done on my schedule not yours. And if you can't find the right place for something leave it out on the cabinet so I can find it later.
  10. Onions, peppers - I would love for you to cut up some onion and peppers for me.
  11. Respite - giving someone a couple of hours off and away is beyond measure
  12. Children - maybe this is different for some patients but not a very good idea here. My patient is not very child friendly. This is difficult for caregivers too since sometimes those children are grandchildren.
  13. Paying bills and business stuff - that's very nice for you to take care of that
  14. Relatives that ask for money and help - very, very bad - don't do that.
  15. Gifts for the caregiver - that's very nice of you but unless you are going to sit with my patient I can't go to the movie or out to eat or whatever. And I don't need any more junk to eat.

Thursday, July 19, 2007

Amazing Grace

I was thinking about the song "Amazing Grace" the other night.

"Amazing Grace"

Amazing grace, how sweet the sound
That sav’d a wretch like me!
I once was lost, but now am found,
Was blind, but now I see.

’Twas grace that taught my heart to fear,
And grace my fears reliev’d;
How precious did that grace appear,
The hour I first believ’d!

Thro’ many dangers, toils and snares,
I have already come;
’Tis grace has brought me safe thus far,
And grace will lead me home.

The Lord has promis’d good to me,
His word my hope secures;
He will my shield and portion be,
As long as life endures.

Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall possess, within the veil,
A life of joy and peace.

The earth shall soon dissolve like snow,
The sun forbear to shine;
But God, who call’d me here below,
Will be forever mine.

John New­ton, Ol­ney Hymns (Lon­don: W. Ol­i­ver, 1779)

It is such an impressive piece. I started out thinking about the phrase "how sweet the sound" and comparing it to my own experience. For me it was an auditory sensation (hallucination by many) that occurred when I first met The Savior. I wonder if it was for Newton as well. I have read accounts of his conversion but none in sufficient detail for me to know if he in fact heard something. Usually the account is that Newton was piloting a ship through a violent storm and cried out to God and the storm eventually subsided. Newton later reflected on this event and concluded that God had spoken to him through the storm. But I wonder if it was more than that, not that a life threatening storm on the open seas isn't sufficient of itself!

I admit I myself am a little reluctant to tell others that God spoke to me and, in fact, that He still speaks to me. Although the experience today, some 25 years later, is not the same auditory experience as that first time. I have never had other auditory experiences like that first time.

But the voice I heard was such a sweet sound. If I could sit in the presence only of His voice for mere minutes then that would be greater joy than any I have known these years of my life. Besides joy the overwhelming sense I experienced was of huge size.

Then Newton follows with "saved a wretch like me." In my own experience the realization of what a sinner I really was - a wretch is a term I cannot improve - occurred later and not before. I have always wondered that so many evangelists and preachers attempt to convince people that they are sinners first when my experience was the opposite. I wonder if it were also true for Newton.

And the next words about being lost and now found and blind but now able to see is exactly my own experience. I have described it many times as an experience like being in an absolutely dark room and then turning on the lights. Obviously the room had been there all the time but I had no light to see it or anything in it. And when I could see I felt like I belonged - like a member of a family belongs - like having been lost and then found.

What a great song. What a great Savior.

I read that as Newton approached his final days of life he remarked "I remember I was a great sinner and that I have a great Savior."

It has always made me wonder if Newton had Alzheimer's or some other form of dementia.

Regardless it is a wonderful thought: "I have a great Savior."

Wednesday, July 18, 2007

Fitting in - Belonging - Venting

I have been reading posts on various forums. I've posted a few times here and there. I find the forums to be very interesting reading. There are several I read that deal with my locale - city and state. Several others are public forums that deal with Alzheimer's disease and especially caregiving for Alzheimer's patients. Then there are several private blogs I read. Mostly they are by caregivers. I find the Alzheimer's caregiving forums the most interesting and helpful.

Caregiving is isolating. It was more isolating at first than it is now. In the beginning I had no help and was "on" pretty much 24 hours per day and 7 days per week. That went on for several years. Then there was a particular period of sleeplessness and I was in pretty bad shape. That's when I knew I had to get some help and found an aide service. That gave me some much needed time away.

But even before that though I had been telling my children a lot of stuff about what was happening. Finally I realized I was letting off emotional steam to my children and that was really unfair to them. So I stopped doing that. I found an e-mail list that helped a lot for a while.

Now there's no one really with whom I am comfortable sharing my experiences. I don't want to talk about it anymore than necessary for one thing. I only have minutes away. Yesterday I was discussing something and I noticed I told the other person "today I have 90 minutes." That's pretty pathetic when you count time in minutes. Regardless though when I am away, even for a few hours or even a few minutes, I need to really try to be "off." Talking about Alzheimer's and caregiving doesn't help me be off. And it is so deceptively easy to fall into a long discussion about it for me. Someone asks a simple question and I end up giving a soliloquy.

I especially need to be careful when I am with my dearest wife. It is hard for her in so many ways and my choice to be a caregiver is my responsibility and not hers. Plus when I'm with her I want to concentrate on us. That's not so easy sometimes for me. I somehow have to switch off that caregiving mode and switch on the lover, husband, friend mode.

I have so many hats I wear. Well not hats literally of course but roles with separate responsibilities. I don't look very good in hats. That switching of roles is enough stress to last me a lifetime.

I think it is better that my family and friends are spared many of the details of my caregiving life. They all know what I do is hard. It's not really necessary to share all details. I think it is part of the CSI phenomenon. And many people don't want to know too much anyway. I think it brings one's own mortality too close.

Holding emotions in isn't all good either.

So I visit the forums and blogs. I've posted some. But the forums are overwhelmingly populated by women for one thing. That automatically puts me in a radically different group. There are a few men who do post but so far I've not really connected with any of them.

And then I am in year nine. That's pretty long even in the caregiving universe. I'm still caregiving in-home, too. So many at my stage have placed their loved one in a facility. Apparently there's very little that I have not experienced now based on the posts.

Besides all that there are people who usually post really good answers to most initial posts. So, even when I've posted, I usually think my contribution is negligible.

I've been around forums before so I try to avoid the flame war questions. I occasionally disagree over one thing or another but I really don't want to be controversial. I have enough stress without deliberately adding to it.

Any kind of venting on the forums often solicits the advice to "place your loved one in a facility." That advice just adds to my stress. And I'm trying pretty hard to do nothing deliberately to increase my stress.

But reading does make me feel less isolated.

Sometimes I start to post a reply to a post on one of the forums. And first thing I know I've written quite a few words. But then I think "whoa, I've gone way off thread here" and I discard the post. But the funny thing is that just writing without posting seems to be rather cathartic for me. Or I get to the end of my answer and then I think "Really these people don't want to know nor even do they care what I think" so I discard it then.

But I was never a big joiner and I suppose that it is a natural part of my personality.

Tuesday, July 17, 2007

How Can I Laugh?

That was also a question on an Alzheimer's caregiver's forum.

Some things are just funny.

Some things are so absurd that they are funny.

Some things are so awful that there is no emotion that fits. And so I laugh.

The forums are helpful in a certain way. For one thing there are people who more or less understand some things because they have also experienced them. For another it is not a good idea to always be talking about Alzheimer's with family and friends. Nothing good really comes of it.

I'm sick today. I became ill on Sunday. I hate being sick.

Monday, July 16, 2007


There was a post about resentment on one of the forums.

I looked up the word in one of my dictionaries. Resentment is a noun that is customarily defined as "a feeling of deep and bitter anger and ill-will."

I thought so but I guess I was hoping for a loophole in the definition. Sometimes that happens. But if this is the definition then I've definitely harbored resentment. Some writers on the forum said their resentment was towards the disease and not towards their loved one. I would like to be that noble.

But I'm not. Fortunately though my resentment has never been very extreme nor has it lasted for a very long time.

Sunday, July 15, 2007


Sometimes there is so much stress. It seems to come from all sides and all at once. It feels like a vise squeezing my head and my heart.

It isn't always like that. Most of the time its normal stress - whatever that is. But one problem at a time or at least just a few problems at a time.

It seems to be the nature of Alzheimer's caregiving that unexpected problems occur frequently and rapidly. I don't know why that is.

That's my thought for the day.

Saturday, July 14, 2007


Each time I moved I got rid of a lot of stuff. By the time I came back home to help out Mom and Dad I had a one bedroom apartment worth of stuff and a little more in a storage rental. I gave most all of that away and ended up with about a pickup load I guess. I don't really have that much anymore. I had a TV when I came here but it broke not too long ago.

Everything else pretty much belongs to Dad. Actually Dad thinks that everything belongs to him whether it does or not.

It used to bother me that I had no house or car or anything else for that matter. But it doesn't seem very important anymore.

I had carved out some private areas for myself. My room wasn't one of those things though and my wife remodeled it when she thought she would live her with me some. And when someone spends the night to look after dad they use my room. So I guess it is a kind of public space now. I think the closest thing I have to something really mine is this laptop and my Treo.


Funny though - don't miss having stuff.

Friday, July 13, 2007


I am 59 today.

I have, maybe not always but for a while, tried to remember others' birthdays. I try to remember and send cards to a few people. I don't always do a good job of it. I've tried to do something a little special in honor of my own, too. After all without a birthday - well there is no after all without one.

Last year I visited Barnes and Noble and bought a book. And then I sat in the little Starbucks there and read for a while. Then I went to Furr's and bought some liver and onions to take home with me. I hadn't had any liver and onions in a long time and I really wanted some. It was a pretty good birthday last year. It was a Thursday last year and I had my four hours and that's how I spent it.

Four hours isn't very long for some things and way too long for others.

This birthday is different somehow though. There is not one thing I can think of that I want. I am tired, too. Not physically tired really but emotionally tired. Today is a busy day for me anyway. It's Friday and Fridays are always busy. I haven't figured out exactly how I'm going to do things today. My brother is covering for me tonight so I get an entire evening and night off.

This is a lonely birthday. I don't really understand all the reasons why. It has something to do with my dad's Alzheimer's. It has something to do with being his caregiver. There are other things, too. Responsibility things - duty things - change things - to do things - to name a few.

I'm really grateful for my birthday though. I am grateful for my family and my wonderful wife and dad and all the things The Lord has allowed me to do.

I think I am most grateful that I know The Lord and that He knows me.

UPDATE (Saturday July 14, 2007 - morning)

I had a great birthday. I received text messages from several and e-mails from more. My son brought me a Starbucks coffee and a Starbucks card. Then later the guys took me to Rudy's in Norman for lunch. Rudy's has good barbecue. After that we toured several places in Norman and then I ran all my errands. I had a haircut scheduled for 4 and made it with time to spare. Then it was out to my wife's place and we just had a great time. My son covered for me with dad for the afternoon cream application and my brother came that evening to spend the night. It was just a great day for me all the way round.

Thursday, July 12, 2007

Work and Life After Caregiving

Caregiving has been my all encompassing life these last 8 years now. During the first several years I still had my vocational work. I don't work anymore though except for the occasional job for one long term, cherished client.

Caregiving is kind of strange about work, at least for me. For reasons I really cannot explain - or maybe I don't want to know - I have a really hard time concentrating on work type things. Bookkeeping and bill paying and so on have all been almost impossible for me from the beginning. Dad's attorney told me once that he thought it was because I had worked alongside my dad for so long. Maybe so but it almost makes me physically sick. No, not almost, it does make me ill. More and more it is any kind of work, too. I have a bunch of legal documents I need to read right now and I'd rather take a whipping than start. Once I start I am alright but the starting is so hard. Then I wonder if that's my own first symptoms. Then I feel guilty about wondering.

But I've been thinking about what I will do after dad dies. Of course I don't know when that will occur. And sometimes I worry that he will outlive me - not that I would die early but that I would be unable to care for him to the end of his life. Not real worry mind you but just that thought. It seems like things are changing now and I guess that's why I think about the future.

I never really think of much that might lie ahead though. I try to imagine but instead of going forward I always go backwards. It's the same inability to concentrate. Then I start remembering back over my life. I remember each time that I had a major change in work and how I felt before and then how I felt afterwards.

The first big change was in college. I really had my heart set on being a Ph.D. type professor. But I gradually realized that it was absolutely something I found neither interesting nor fulfilling. I hated the politics and it was so slow. So I switched to business with my dad. That was the one thing I had always vowed I would not do.

Then later on in that business I was doing something I really enjoyed and was awfully good at - or at least I thought I was good at it. But one day my Dad, who was my boss after all, decided we needed a computer and suddenly my job was to make the computer work. I hated that change and did everything I could to keep it from happening. But it happened anyway. And I found out I loved computer programming.

Another time I was in a business that failed. I woke up one morning with nothing to do. I had never had that experience before. Didn't have any income either. No one wanted to hire me for sure. At the time it seemed like a really, really bad thing. But I found an entirely new career programming on the Internet. And I have enjoyed that so much.

Then when I started caregiving I really wondered if I could do it much less if I would like it. I wasn't exactly the prototype caregiver person. But I have really never done anything that is more satisfying and fulfilling than caregiving. It is also the most difficult thing I've done.

There is a big difference now. I was called to both my last two jobs by The Lord. It was very clear to me from the beginning. When this ends I figure He will call me to something else.

I don't know what it might be. But I bet it is interesting. So I am kind of eager to know what it is but with some trepidation, too.

Wednesday, July 11, 2007


There was a post on one of the caregiver forums about bathing. That's been a huge problem for me over the years. It was a terrible problem with my mother. Later, after she died, it became an even bigger problem with my dad.

Eventually I learned to choose my battles very carefully though. I found out I had a very limited reserve of emotional and physical energy. I had more physical energy than emotional energy though. If my emotional reserve became depleted that was it for me - couldn't do anything else until I was replenished.

So in the great scheme of things I finally figured out that bathing was not a very high priority. On the other hand I found out that dirty clothes - and I mean really dirty - was a problem.

Those dirty clothes get to smelling really bad for one thing. For another there is a real chance of growing stuff that's pretty undesirable. Touching them is awful, too.

The discussion though made me think about it from a spiritual perspective. We get so involved thinking about the exterior and forgetting about the inside. I recall those words of Jesus in Matthew 23:25-27 (NASB):

25"Woe to you, scribes and Pharisees, hypocrites! For you clean the outside of the cup and of the dish, but inside they are full of robbery and self-indulgence.

26"You blind Pharisee, first clean the inside of the cup and of the dish, so that the outside of it may become clean also.

27"Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs which on the outside appear beautiful, but inside they are full of dead men's bones and all uncleanness."

I have no doubt that Dad's dementia is entirely physical. His spirit still is present with me here. Sometimes I can even sense him here.

Today we are sitting on the porch. He's in his recliner and I am sitting in the old white, springy lawn chair. I bought the recliner not so long ago to replace one more ancient. I prefer the old lawn chair though. I think it is because it is old. I remember when it came to live here. It was not new then either.

Dad occasionally tries to talk to me about one thing or another. But mostly we are sitting here in silence except for the old Sony CD player. It is playing "Majesty" by Jack Hayford:

© 1987 Jack Hayford

          Majesty, worship His Majesty.
          Unto Jesus, be all glory, honor and praise!
          Majesty, Kingdom authority,
          Flow from His throne, unto His own
          His anthem raise.

          So exalt, lift up on High the name of Jesus.
          Magnify, come glorify Christ Jesus, the King!
          Majesty, worship His Majesty,
          Jesus, who died, now glorified,
          King of all Kings!

          Majesty, worship His Majesty.
          Unto Jesus, be all glory, honor and praise!
          Majesty, Kingdom authority,
          Flow from His throne, unto His own
          His anthem raise.

          So exalt, lift up on High the name of Jesus.
          Magnify, come glorify Christ Jesus, the King!
          Majesty, worship His Majesty,
          Jesus, who died, now glorified,
          King of all Kings!

          So exalt, lift up on High the name of Jesus.
          Magnify, come glorify Christ Jesus, the King!
          Majesty, worship His Majesty,
          Jesus, who died, now glorified,
          King of all Kings!

It is enough for me that we can sit here together like this and listen to this song and watch the traffic.

Tuesday, July 10, 2007

Insight Into Grace

I was thinking yesterday about my caregiving for my dad.

So often he resents my efforts to help him. Sometimes he actually thinks I am threatening him. Sometimes it isn't me but something else external such as someone on television or thunder or the sound of rain. He is still able to do quite a few things for himself. My goal in caring for him is to help him sustain as much independence as possible. I do it because I love him.

My goal has never been complete safety for him. If it had been then we would not live in his home because of the stairs. But he was very clear that he wanted to live out his days in this home that he and my mother together built here. He knew there were risks. He and my mother cared for my grandmother until the last few months of her life. So they were informed.

And my parents were very practical people. When my grandmother's care became just too much for them they reluctantly placed her in a nursing home. They learned that placement alone does not solve all problems. The first two homes could not keep track of my grandmother. It was not all the fault of the homes either. She appeared to be a frail little woman with barely sufficient strength to hold her head up. But on occasion she managed to find a reserve of vitality that allowed her to jump over gates and begin her journey home. She only ever wanted to go home and was always seeking that.

Dad does things now that are so out of character for him that we know they are caused by the disease. He would be appalled if he knew. But that's the thing: he doesn't know.

That is where the insight occurred.

We humans have a kind of spiritual dementia I think. We are born with it. It isn't as bad at the beginning but it progresses as we age. But even at the best we are spiritually incompetent - dead according to the Holy Scripture. We would make good spiritual decisions but we cannot because we have this spiritual dementia.

I don't precisely understand spiritual dementia or what it means to be left in that state. For that matter I don't precisely understand physical dementia either. But I do know what happens physically if Alzheimer's and other dementia conditions continue. At some point the patient loses the ability to walk. Total incontinence occurs. Weight loss starts and continues despite the best efforts to stop it. Total helplessness follows. And eventually even the autonomic brain functions cease. Finally the body can no longer continue and physical death occurs.

But for reasons that I will never fully comprehend, at least in this physical life, The Living God loved me so much that He drew me to Him through His Son, The Lord Jesus. I like to think I would have chosen to trust Him had I not been spiritually demented. Regardless though He undertook my care Himself.

Now just like my dad sometimes resents me when I am trying to help him I am quite certain that I also resent and struggle against The Lord. And there are spiritual things that frighten me because I do not understand them just as my dad sometimes thinks the people on TV are in the room with him.

And just as I try my best to serve my father out of love, then The Lord Jesus shepherds me out of love. Except that He is perfect in His efforts and mine far from it.

I am eternally and ever grateful to the great caregiver - Jesus, my Savior.

Monday, July 9, 2007

Alzheimer's care for me - Part I

Today I was reading posts on a forum for Alzheimer's caregivers and became interested in a thread titled "If you were the one with AD, how would you like to be cared for?"

I've been working on a living will and thinking about how I want to instruct health care workers for care in the event of my inability to make decisions for myself. I hadn't really thought about dementia care.

I find that kind of strange since I have spent most of the last decade serving as a caregiver.

But it is a great question and I am not certain I am prepared to completely answer it at this point. So I am planning on at least 2 entries.

Independent Living

I want to live independently as long as possible and reasonable. And I do know a few ways that I can extend that period as I age.

Home design and location can really help. Hallways and door opening should be wide enough to permit walkers and wheelchairs. The ability to live on one level is imperative. Bathroom design should contemplate bathing for older individuals. Location should provide relatively easy access to commonly used services and stores.

Personal aides and services could also extend the term of independent living. I think that as my Baby Boomer generation ages that there may well be changes in some stores. We're a numerous bunch and pretty demanding. So I would not be surprised to see grocery stores and entrepreneurs offer shopping and delivery services. Personal chefs, cleaning and maintenance services, and other such providers will undoubtedly become more widespread.

Keeping fit and healthy and maintaining good nutrition can certainly extend the length of time one can live independently.

But that all begs the question really. Because eventually there very likely will come a time when independent living is just not possible.

So then what?

To be continued ....