May 7, 2010

Judge says: “Time Served”

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Many more nights like last night, and on Judgment Day, the Judge will just say to both Mary Ann and me, “Time Served” and send us right on through the pearly gates. (Don’t worry, I recognize that does not reflect Lutheran Theology.)

My point:  It was not a good night last night.  It continued as it began.  That description is in last night’s post. Mary Ann was actively hallucinating and mixing bizarre dreams with hallucinations until 5am.  Then she settled for two hours, and at 7am was up and at it again.  This mornign she announced that she hated the place she slept last night.

I think it was after I had gotten her breakfast and pills, at this point I am not sure exactly when it happened.  She insisted on getting shoes on.  I put on some moccasins, thinking her feet were just cold.  Then she wanted her coat on.  She often sits with her jacket on when the house is cool and she has just gotten up.  This sounded different.  I asked where she was going.  She said she (we) were going out to the car and to the movies.  I reminded her that she was still in her pajama’s and that Hospice Aide Sonya would be coming in an hour and a half.  I didn’t think to mention that the theaters were not open in the morning anyway.  She was not happy with me for frustrating her plans. Moments later, as I moved her into her spot in the living room, in a matter of fact way, she asked the little girl if she wanted to go with us to the movie.  I am guessing that the little girl was Granddaughter Ashlyn, since she often sees her and talks to her.

There is no way I can even begin to describe the various living dreams she had last night. For one thing, I don’t remember them.  Most of the time, they just don’t connect with anything that makes enough sense to me to hang on to the memory.  Secondly, there were too many of them, each unrelated to the last, as they came every few minutes.  Some times there would be a repeat, for example, one of the first things she said this morning was, did I know we were broken into last night?  (See last night’s post.)  At 4am she asked for a Nitro pill to deal with the pain that the two earlier Tums had not eliminated.  The Nitro pill relieved the pain.  I suspect it was still esophagus pain.  If I understand correctly, on occasion Nitro pills have been used to quiet reflux spasms.

Yes, I would term last night, a night from Hell.  It is hard to imagine how frightening it must be for Mary Ann to find herself in distressing circumstances for so many hours with no sense of what time it is or where she is.  It is, of course, terribly difficult to go through as a Caregiver, helpless to say or do anything to make a difference, or provide any comfort.  I remind her endlessly that she is safe in her own bed and there are no people other than the two of us here.  That never sinks in for long.

It was good today for Mary Ann to have the reality of a morning regimen with Sonya.  Then friend Jeanne came over at 11am to be with Mary Ann again for a few hours.  Volunteer Scheduler, Mary also came over and ended up staying the whole time with Jeanne and Mary Ann.

I spent time away from the house doing errands.  I had enough to keep me busy until mid-afternoon, when I brought home Blizzards for everyone from Dairy Queen.

As far as I know, Mary Ann dozed with her head down on her little table most of the time I was gone, plus some time napping in bed.  She did get up to eat lunch.  After Jeanne and Mary left, Mary Ann dozed with her head on the table, and then wanted to lie down.  She has had no supper.  She just got up long enough to have a little single serving tapioca, and then she changed into pajamas, took her pills and is now in bed.

She has been up once to use the commode.  Since she slept so much today, we might have another difficult night tonight.  I did not get any napping in today, so I certainly hope that she sleeps tonight.

Even though it is chilly tonight (heading for the upper 30’s by morning), I sat on the deck for about an hour.  I put a coat on and brought out an afghan to put over my legs so that I would be comfortable.  A little more devotional reading and some time just tuning in to the setting and the moment, helped settle my spirit.  This is not getting any easier on either of us.

…she just got up asking me to put the things away in the baby blanket.  Indications are that we may have another night like last night.  My hopes for a restful night are not likely to be realized.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 6, 2010

“Have the Police gone yet?”

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I as sitting on the deck enjoying a beautiful evening after Mary Ann went to bed.  The video monitor was out there with me.  She started getting up, so I went in to see what she needed.  She asked if the police were gone.  As confused as I usually am when things come out of nowhere, I asked what they were here for.  She said there was a break-in and the copper tree had been taken.  That is a large metal wall sculpture that hangs in our living room.  Mary Ann was looking at the bedroom wall when she said it was missing.

I told her that the police had not been here, that she must have been dreaming, that there had been no break-in, that I was here the whole time, and that the tree is still hanging in the living room.  After we talked a while, she wanted to go out to the living room to see the tree.  We did so.

After getting her in bed again, I folded the chair and brought the monitor in from the deck and came back to the computer.  She started moving again.  This time she said she didn’t want to go to the hospital.  I asked her if something was wrong that she thought she might need to go to the hospital.  She said “they” told her to get dressed.  Then she said, “You know we were broken into.”

She decided to use the commode, but when she got on it, she didn’t need to use it.  She started talking in that fast sort of jibberish, but I recognized the word “organization.”  I repeated the word and she confirmed that is what she said, but there was nothing connected to the word that either of us could identify.  When I lifted her from the commode to transfer her back into the bed, she fainted.  After swinging her on to the bed, I eased her into a lying position.  I had to try to get her pajama bottoms back up when she came around and was awake again.  She wanted to go out into the living room to see what was going on.  We went out there and she fainted again.

I asked her if she wanted to sit in her chair in front of the television.  I thought that just maybe the television and living room setting might help her hang on to reality until she was tired enough to fall asleep and get through the REM cycle (where the dreams occur) into deeper sleep.  Before I could get her to her spot, she sort of fell asleep in her chair.  It was apparent that she would not be able to sit up on her own.

I got her back to bed.  Since then she had another dream that I was lying on top of someone.  All of this has happened in the span of about a half hour.  At this rate it will be an impossible night.  At the moment she is lying in bed, facing the television watching her very favorite program “House.”  My hope is that she will remain engaged in it for a while, just giving me a break so that I can finish this post.

Last night was better than the night before, but not wonderful.  She got up early and I set her up in front of the televsion so that I could get a little more sleep.  After I got showered and dressed. we took care of her pills, breakfast, got her dressed.  During that time, she seemed reasonably connected.  We talked more about yesterday morning’s angry accusation.  She seemed to have gotten past it, at least at that moment.

Shortly after breakfast, she asked to lie down.  She slept for three hours or so.  During that time friend Tim came by with a vase of irises for her.  Tim is husband to Volunteer Jan.  When Mary Ann woke up, she had her usual, fairly small lunch.  During the last of the time she was eating, she needed to use the bathroom.  After we returned to the table, I got her into the dining room chair to eat the last of the chips and have some Pepsi.  Then she just sort of switched off.  It was almost as if she had fainted but not completely.

… break to respond to Mary Ann.  She now thinks she is in the hospital, wondering what they are going to do to her.  Watching “House” may not be helping, but she was concerned about the hospital before that program came on.  She wants the television left on.

…back to lunch time today.  Since she just switched off, I took her back to bed.  She slept a few more hours.  She got up long enough for supper, but ate very little.  Neither did she want to go out for the Blizzard of the Month at Dairy Queen (Buster Bar Blizzard, fudge and peanuts mixed in ice cream), nor did she even take the offer of ice cream from the freezer.  Very soon, she wanted to go to bed again.  She was quiet for about an hour before the living dreams fired up.

Since she has slept so much today, she may very well be up and active most of the night.  I dread that thought. (I just made a trip to help her to the commode.)

On the positive side, I got some devotional reading done this afternoon as I sat on the deck.  Again this evening I had some more quiet time to relax on the deck.  Much of the time I was out there, the Mallard ducks were sitting in the waterfall.  At one point there was a little drama as the two all of a sudden high tailed it off one way as fast as they could waddle.  Soon there was another Drake coming from the opposite direction and heading after them.  The next time I went out there was a hen by herself in the waterfall.  By the way, the ducks, especially the hens, are almost completely invisible when they are in the waterfall and the greenery and rocks right around it.  Even though they are no more than twenty-five feet away and I know they are there, I need the binoculars to differentiate the hen from the background.

The Bluejays and Grackles are constantly busy, with doves and the occasional Cardinal, Robin or Sparrow joining in the activity when I am out there.  There is not much variety of birds, but the ones that are there are entertaining.  Again, there was a great breeze growing into wind at various times.  The sky was bright and blue with a few wispy clouds. The trees are almost in full leaf.  The green of the leaves and the newly mown grass has that spring vibrance.

…there she goes again.  Just a Tums.

At the moment, as I write, the window in my office is open so that I can enjoy the sound of the wind, the cool air coming in the window and the fairly mild episodes of thunder and lightning.  So far very little if any rain has fallen. The volume of the thunder is increasing, as is the number of lightning flashes.

…another Tums.  Television off.

I will finish editing and get to bed in hopes that it will help that I am in the room with her — I doubt it.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 6, 2010

Rendered Speechless

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…No small matter for a retired preacher.  This one came so much out of the blue, that at first I was completely at a loss as to how to respond.

The night had been a tough one.  Mary Ann just could not settle.  We were up many times.  The frequency diminished to once every half hour or forty-five minutes after about 3am.  The last one was at 4:45am before I got up at 6:30am to prepare for the Spiritual Formation group that meets on the deck (weather permitting — downstairs otherwise).  I complained to Mary Ann that I would be getting up soon and wanted at least a couple hours of sleep before then.

Mary Ann was sleeping soundly when I got up to get ready for the Group.  Since a couple of folks couldn’t make it there were only two of us this morning.  We talked for a bit on the deck until I saw Mary Ann moving.  I keep the video monitor with me during the group when there is no Wednesday morning Volunteer.

I went in, and as she was lying on the bed facing me, I asked if she needed to use the commode.  Wide-eyed and angry sounding, she said in a strong voice, “Don’t lie to me!  I know you have been out all night smoking Marijuana.  You wreak of it!”  Yes, preacher of many words that I am, I was completely baffled and at a loss to know how to respond.

It is such a mystery how those synaptic connections can create thoughts with no context.  We both preceded the baby boomers by long enough that Marijuana had not yet been invented when we were in high school.  We didn’t experiment nor did our kids have any apparent experience with it.  In fact I asked Mary Ann this morning how she knew what Marijuana smelled like that she decided I was wreaking of it.  She said the kids told her.

Realizing that since she began this interaction with the non-sequitur response to my question about the commode that I should stop lying, I tried to connect with something that might bring her back to reality.  I asked who exactly she thought it was who was up with her multiple times all night long if I was gone.  I reminded her of my complaining at the 4:45am commode trip.  She remembered that.

I got her up and to the table to eat something before Bath Aide Zandra arrived.  She seemed to be transitioning at least part way back to reality.  I then commented on how angry she was this morning — to which she responded “So would you.”   She seemed to be back to feeling that it was real and not a dream/hallucination.

I asked if she still smelled the Marijuana.  She said, yes.  Then as if to hint that maybe it was not true that I had been smoking it, she said she knew that the kids smoked it.  She had seen them the last time we visited there.  She was referring to our Kentucky crew.  Then she said that the last time the Kentucky Daughter Lisa was here she said that she smoked.  At this point Mary Ann switched to talking about regular cigarettes.  Anyone who knows Lisa realizes just how crazy that suggestion is.  Mary Ann said that Son Micah told her he did not smoke.

I don’t remember so much as a recent news broadcast that would have brought the word Marijuana into her mind, unless it has been in one of the Law and Order episodes that dominate our television.

I realize that this sounds like something worthy just laughing off.  It is not funny to me.  In fact it was scary.  I felt utterly helpless to respond in a way that could deal with her anger.  It is hard to think about how upset she must be feeling when those painful and very vivid thoughts and sounds and images, and now even scents, take hold as her reality.  It is clear that there is nothing that I will be able to say that will remove that view of reality from her mind.  I will not be able to reason it out with her.  Judging from past experience, that now will become a reality she goes back to, one that will remain with her, accessible at any moment in time.

I read pretty much daily accounts of experiences almost exactly like ours.  The online Yahoo Group of Spouses of those with Lewy Body Dementia [LBD] talk about the hallucinations and delusions and vivid drreams confused with reality all the time.  Lots of their Loved Ones have people living at their house, are convinced that their spouse has been replaced by an imposter, are paranoid about one thing or another.  It does help to a certain extent to know that we are not alone in this regard and that it is normal behavior for those with LBD.

On the other side of it there is a terrible sadness realizing that this is only going to get worse.  The deep pain is apparent when those posting in that online group talk about living with a person who is physically present but no longer the person they have been married to for so many years.  That person has in some cases ceased to exist completely.  They are not alone but very lonely.

I am very grateful that Mary Ann is still present much of the time.  It is frightening to see the times she is present diminish as the weeks and months go by.

Friend Jeanne came over to spend a few hours with Mary Ann today.  Mary Ann spent more time awake than I thought she would, given the rough night last night.  I appreciated having time to run a couple of errands.  Then we went to G’s Frozen Custard for Turtle Sundaes.

Mary Ann ate a fairly light supper and dozed with her head down for while.  Then she got ready for bed.  She has been sleeping fairly well, at least it appears so.  I certainly hope she gets a good night’s sleep. We both need it!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 3, 2010

Confusion Switch Flips On Suddenly

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It just happened so suddenly. Volunteer Deb arrived for the evening.  As I was getting prepped for heading out, Mary Ann got up and walked into the kitchen.  Deb was with her, as was I when she fainted.  We got her in a chair, then into her transfer chair.  She immediately popped up again, without the brakes yet set.  We got her to her spot by the little table at which she sits in front of the television.  She stood up again.

This time she responded that she wanted to go to the bathroom.  Deb took her while I was still there.  When Mary Ann came back to the Living Room, Deb said she had been looking for her diamond.  I pointed out that it was on her finger.  She popped up again needing to do something she tried to describe but it just didn’t compute.  Then moments later she popped up again and just stood there needing to do something but not sure what.  She fainted again. Deb, of course, was right there with her hand on the gait belt (Deb is a Nurse).

She popped up again. I asked Mary Ann if I could bring her something when I was out.  That is our code for getting her ice cream.  She said, “garbage bags.”  I asked her what she meant, what garbage bags.  She got angry with me for not knowing what she was talking about.  I asked her if she would sit down for Deb since she had been fainting.  She reacted angrily and sat down.  There was nothing in the air, any former conversation, anything in the immediate or recent circumstances having anything to do with garbage or garbage bags.  She responded as if I was just being difficult on purpose about the obvious matter of garbage bags.

Recently, the hallucination/delusion/dream  mixed with reality has been a constant undercurrent, surfacing at various times.  There have been days when she has had streaming confusion.  While the confusion can come and go in moments, tonight’s move from the mild dementia in the background to blatant and intense problems happened in a more dramatic way than I remember happening before.  Rarely has anyone else seen the dementia on the surface with this level of intensity.

After I left, Deb said there were a number of trips to the bathroom, with some action in the last one.  Then she settled in front of the television.  I asked Mary Ann as I was putting her to bed what she was referring to when she got angry with me about the garbage bags.  She wasn’t sure but she thought it had something to do with our Granddaughter, Chloe.  A couple of years ago we bought garbage bags from Chloe as part of an annual school fund raiser.  To my knowledge there has been no conversation in our household about those garbage bags since then.  At the moment, as I am writing, Mary Ann seems settled in bed.

Last night did not go well at all, so I expected today to have some problems with the dementia. She ate reasonably well.  Bath Aide Zandra came to give her a shower.  Mary Ann was in and out a bit.  She asked me to let the dog in.  There is no dog.  She talked about the tapeworm she is convinced that she has.  She said she sees it in the bed at night.  While she was in and out, it was not overly intense.

She was tired, understandably after last night.  There was a lot of time with her head on the little table in front of her.  She opted for Chinese from the grocery for lunch. Hospice Chaplain Ed came over after lunch for a while.  He asked Mary Ann how she was doing, asked me how I was doing, but most of the time it was the usual conversation that included our various ministry experiences.  He was interested in the Concert we had at church since he is a musician, plays the piano.  Mary Ann had her head down and dozed through most of what was an exceedingly boring conversation to her.

She then napped in the bed for about an hour and a half.  I got in some deck time while she was sleeping.  Tonight while Deb stayed with Mary Ann, I did a little shopping at Penney’s to replace some holey underclothes (it’s a pastor thing) and get a long-sleeved white shirt.  Yesterday’s Concert revealed that I had none that fit me.  Who needs a white shirt when retired?  Levi’s and work shirts (euphemism for hang around the house doing nothing shirts) are all that are needed.  Then I went over to my spot with the best view in town and sat for an hour or so.  I read from Weavings, the Spirituality Journal that comes to the house quarterly.  I watched about as beautiful a sunset as a person could hope to see.  In that spot I can hear birds and frogs and wind in the trees against the backdrop of tires on the Interstate a half mile away.

The deck time and sunset time was helpful.  Lately it has just been a little tougher for both of us to deal with the vagaries of each day’s leg in our journey — nothing dramatic, no one thing in particular.  Having said that, a prayer popped into my mind.  In our tradition there are formal corporate prayers (sometimes called Collects) that are often used in worship.  Many of them have a long and rich history.  There is one used in a worship service called Evening Prayer (also in other services) that is a favorite of mine. Here it is, copied from The Lutheran Book of Worship, p.153:

“Lord God, you have called your servants to ventures of which we cannot see the ending by paths as yet untrodden, through perils unknown, Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us through Jesus Christ our Lord.  Amen.”

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 1, 2010

Still Sleeping

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It is almost 11am, Saturday morning, and Mary Ann is still sleeping.  I wrote no post last night since I was especially tired.  The two nights before last were not wonderful.

Yesterday, Mary Ann was again very tired all day long.  The hallucinations/delusions/dreams mixed with reality continue. Yesterday morning she asked me to check on the towels.  I confirmed that she meant the towels for the people she is convinced are living downstairs.  She admits that she thinks I am lying when I say that they are not here at the house.  I offered to take her downstairs.  I think the bed is not made but has the clean sheets folded on it.  The problem is, not only would it be almost impossible at this point to get her down and up the stairs by myself, but she would probably just conclude that they cleared out for the moment just to fool her.

We did not get out yesterday except to make a quick circuit to get my coffee and a take-out luncheon Lasagna from Olive Garden for Mary Ann.  Later in the day she opted not to go out for ice cream but eat what we have from the store here at the house.

I don’t know if this is actually a decline or just temporary, but the confusion becoming a routine part of each day, increased fatigue, and the reluctance to go out is a little unsettling.  Maybe it is still the Urinary Tract Infection.  She is done with the ten days of anti-biotics.  We will be getting a specimen for the lab when she gets up to see if it is actually gone.

…Mary Ann is up now.  She got up at about 11:15am.  She ate a usual breakfast and then sat for a while, pretty much dozing most of the time.  Understandably she did not want to lie back down even though her head was hanging.

When I asked about lunch, she said she did want to go out.  I was apprehensive since she appeared so tired, but it seemed worth a try just to get both of us out of the house.  When she stood up to put on a light jacket, she ended up having a major fainting spell.  After she came back around, she still wanted to go out.  She, of course, has little awareness of the fainting.  I rolled her to the door to the garage and she walked down the steps as usual (she handles steps better than flat surfaces) into the garage.  Before I could get her into the car, she had another major fainting spell.  I have four folding chairs lining the garage wall along her side of the car, so that one is always in reach.  I grabbed one and got her in it before she went down to the floor.  I have put the colorful foam playroom squares along her side of the van so that if she does fall, the damage will be minimized.

I finally got her into the car, and we made our way to Perkins.  Since she was in the wheelchair except when transferring from the car and into the chair in the restaurant, she did not faint during that outing.  She managed to eat a few pieces of pancake on her own, but then she allowed me to help her eat more after ceasing to be able to get them speared and into her mouth.

When I got her out of the car back at the house, she had another major fainting spell.  After she was awake and able to stay seated in the folding chair by herself, I prepared the portable ramp into the house and got the transfer chair.  That way i was able to get her into the house.  As always, she needed a trip to the bathroom.  She fainted again there, but this time it was not a major outage.  By the way, when I refer to a fainting spell as a major one, it means after jerking and stiffening for a few moments, she goes limp.  Then she remains out for a minute or two (rarely it is many minutes up to a record fifteen).  During that time she is snoring as if having a spell of apnea, sort of gasping for breath, and saliva comes out of her mouth (my sleeve usually gets wet since I put my arm across her chest to keep her from falling out of the chair).   Gratefully, she is completely unaware of all of that and remembers nothing of it.  She sometimes seems to think I am making all of that up, that she does not actually faint.  Since she has no conscious awareness of the fainting spells, she has no natural reticence to getting up and heading out no matter how many times she has fainted.

When Hospice Nurse Emily came to pick up the specimen for the UTI lab test, I asked her to take Mary Ann’s vital signs since Mary Ann had appeared to have labored breathing and admitted to having some difficulty with her breathing.  Her vitals were fine.  The blood pressure reading was 158/92.  That reading came after there had been some fainting spells and before we headed out for lunch, experiencing a number of major spells.  That reading would be high for anyone under normal circumstances.

Here is my dilemma.  Do I add back into her medication regimen the Midodrine that raises her blood pressure all the time.  When she is on the medication, it is as high as 220/120 in the mornings and goes even  higher sometimes when measured at doctor’s appointments.  Many months ago, when she was taking a full therapeutic dose of Midodrine, we were able to do much more in the way of traveling, eating out, participating in activities.  We have long ago decided that the quality of our time is more important than the length of it.

As I write, I would like to be attending the wedding of the daughter of a family of which we think very highly.  Her Mom was on the Staff at the church from which I retired.  I have enjoyed their kids and value them as friends as well as former parishioners.  If that is not enough, one of the Pastors doing the wedding is a young man whom I watched grow at that church, and had the privilege of Ordaining into the ministry not long ago.  Lot’s of folks whom I came to know and love during the twelve and a half years as part of their lives will be gathered there.  I take some comfort in the fact that I am at the moment doing exactly what Katie and Jacob are  promising to do, what I promised to do over forty-four years ago.

Tomorrow is the day of the concert in which I will sing as part of a trio in a larger choral piece.  It would probably be a good idea to get a good night’s sleep tonight.  Mary Ann is in bed and appears to be sleeping at the moment.  Here is hoping that she sleeps well throughout the night.

 

April 25, 2010

Kiteboarding at the Lake

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Are you at least a little curious?  Can you picture just turned 67 year old Pastor Pete Kiteboarding at Lake Perry on a Sunday morning?  This retirement is really something!

An old saying about a snowball’s chance in Hell comes to mind as the caption to that picture.  Since we attend the Evening Service at the church from which I retired, and since the tradition of Volunteers spending time with Mary Ann on Sunday morning still continues to a certain extent, I have opted to use Sunday morning as a mini-retreat time.

Most often I head up to the lake to just sit in the van and read, walk, meditate, watch for birds and other wildlife, and just spend time in the moment, experiencing whatever it brings.

This morning it brought a very chilly and very strong wind.  I opened the window on the van, covered myself with a jacket and just celebrated the power and the sound of the wind.  Last night was a difficult one.  Mary Ann was up at least four to five times an hour until almost 4am.  Gratefully, at least she slept the next four hours.

I was glad that a Volunteer was scheduled this morning.  Volunteer Jan and her husband, Tim, are in our time in life, so we have lots in common.  Jan does a treatment on her finger nails that Mary Ann appreciates. They just enjoy talking.

As soon as Jan came, I headed for the lake.  When I was passing through some fields after the turn off on the way to the dam area, a juvenile American Bald Eagle and an American Crow took off from on of those fields not far from the van as I passed by.  I suspect that the two of them had had some sort of disagreement that landed them there.

Just as I was driving off after a couple of hours there, an Adult American Bald Eagle treated me to a fly over, then circled for a couple of minutes.  In between the two Eagle encounters, I did a lot of devotional reading.  I have needed as much grounding as I could find the last day or so.  The three or four different articles from journal and online Spiritual Formation sources helped draw me back to a better place.  They were all thoughtful and very well-written.  Each helped reframe reality in terms of something that does not depend on external circumstances to create health and well-being.  There was nothing there that I don’t already know.  It is a matter of bringing the truth into a more central place from which it can generate renewal. I was also refreshed by Pastor Jim’s message at the Service tonight.

After a substantial time with the reading and meditation, a car came blasting by me in the parking lot and landed in the corner of the lot.  Two young men jumped out and started unloading cloth bags and containers and equipment and spread it all around the car and in the nearby grass.  It didn’t take long to figure out what was going on.  It probably took a half hour from arriving in the lot to heading into the water.  Only one of the two actually kiteboarded.  He went back and forth a number of times right by the shore.  He was not out on the water for as long a time as they spent getting the equipment ready and putting on all the paraphernalia.

We had a good meal after returning home, Lisa’s meatloaf, baked potatoes and asparagus.  Even though she had been up so much last night, Mary Ann never took a nap today.  She just refused to do so.  She didn’t really even nap with her head down on the table.  The fare on the television was no better than yesterday.  She was up and down quite a bit.  I just hung close to her.

The Evening Service got us out and with people for a bit.  There was a stop at Sheridan’s for Concretes (chocolate with pecans) to take home and eat.  I haven’t yet been able to bring myself to head into Baskin & Robbins after the nasty treatment the last time we were in (see post from April 15).  When we are in the mood for the flavors of ice cream that we favor there, I will not let my anger interfere with the pleasure of enjoying a couple of scoops.  Life is short.

Mary Ann has gone to bed and appears to be sleeping.  I am counting on nothing, however.  One sleepless night does not guarantee that the next one will be a restful one.  Tomorrow evening Volunteer Tamara came by late today to pick up some dishes so that she can bring us a meal tomorrow to put in the oven for supper.  We are looking forward to that treat.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 22, 2010

Slept for Many Hours

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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Mary Ann went to bed at about 9pm last night.  Once she settled, she did not get up until 12:15pm today.  That is fifteen hours straight.  When I went to the bedside commode to clean it today, it had not been used at all.  She was not up even once.

I said in last night’s post that I hoped to get to bed earlier than usual.  I was in bed by 10:30pm (usual time is 12-1am.  I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me.  After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed.  I also did not get up again until 12:15pm. And people ask what it is like to be retired!!

The rest was very much needed for both of us.  Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with.  The symptoms that suggested to me that I might be coming down with something seem to have subsided also.

Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals.  There was some much needed intestinal activity, demanding my participation.  There was some fainting that made that job more difficult, as usual.  She was able to sit up in her chair most of the time when she was in the living room.

Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired.  I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities.  This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing.  Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.

This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment.  Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute.  There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself.  Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.

It was good to be singing again.  I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along.  Singing in choirs and ensembles was the center of my school years.  I got to serve as student conductor of five choirs spread over high school and college years.   After that I sang in two Seminary choirs during those four years of graduate level schooling.  I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City.  It is hard to accept struggling to read what would have come quickly in earlier years.  When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City.  The barista is of college age.  She immediately put into perspective the reason I might be a little rusty.  She was born in 1986.  How on earth did I get so old so fast!

As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week.  I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things.  The fall after I retired, reality set in.  Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.

There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis.  I made a choice to just do the one thing.  I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle.  I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired.  I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it.  I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same.  It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.

As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it.  I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so.  We cannot repay what has been given so freely.  We can say thank you.  It is all I know to do.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 21, 2010

Tired, Frustrated and Very Grateful

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s night goes.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 20, 2010

Infection Diagnosed

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

April 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

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