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 3, 2010

Mary Ann Attends but Misses Trio

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As we rolled back to the car after the concert this afternoon, Mary Ann asked why the trio I was singing in had not been asked to come up to the front to sing.  We did sing, but somehow it did not register in her mind.  Caregiver Debbie said that she had pointed out when I went up front to sing and that Mary Ann had responded that she saw me. The Parkinson’s Disease Dementia is such an odd sort of disease.  Perception is sort of like Swiss Cheese, there are random holes with no explanation as to why they are where they are.

The concert seemed to go well.  It was tough logistically to pull off since there was a huge choir made up of folks from five congregations.  There were numbers of instrumentalists playing at different times depending on the style of music.  There was classical music and contemporary music, liturgical dance, poetry, drama; there were soloists, ensembles, a hand bell choir, pieces with organ accompaniment and piano accompaniment and combinations of any or all of the above.  It would have been tough to sit through that concert without finding something to like. It struck me what a complex organism the event was with each of us having our little piece that when put together with all the others could provide something of such magnitude.  There were no stars, no one to single out, other than Young, the project director who had the vision and put it all together.

I enjoyed being in the setting, talking and thinking and listening to and making music.  One of the choir directors from another congregation sang in the trio.  He and I had a chance to talk music off and on.  It is a world in which I have spent much quality time in earlier decades.  I find it engrossing and energizing, as well as spiritually uplifting.

Yesterday I had a chance to talk with our eleven year old Granddaughter whose choir concert was also this afternoon, resulting in my missing it.  She seemed okay with my missing her concert.  She told me about some of the songs they would be singing.  Our Son said he would try to get some of the concert on video for us.  I feel better having made that connection.

Mary Ann and I both slept well last night.  I had plenty of time to get her ready this morning, dressed, fed two meals, hair washed.  There was lots of fainting again, raising some concern about how things would go if she tried attending the concert.  When Home Instead Caregiver Debbie came, we just headed over to church.  Mary Ann seemed to do fine.  The concert was almost two hours long, plus a reception afterward. Lots of people made a point of greeting Mary Ann.  Now that there is an awareness that she is enrolled in a Hospice Program, folks are probably less sure what to expect and more surprised to see her appearing to be doing reasonably well.

Last evening and this evening, after Mary Ann went to bed, I was able to spend almost an hour on the deck, enjoying the sound of the waterfall, watching clouds and birds, as dusk arrived and the lights in the waterfall shone at the base of each level, sparkling in the sheets of water coming over the rocks. As a result it is now getting late.  I will hope for another good night’s sleep tonight, but, of course, whether or not that happens is not mine to decide.

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 30, 2010

Such Complex Delusions

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This morning when getting up, Mary Ann looked at the cup with a red cozy around it for keeping the ice water cold for as long as possible and thought it was red Jello.  After I described what it actually was, she reminded me about the red Jello that we needed to call the lady about — the lady who brought it.  We needed to find out what to do to thicken it since something had gone wrong when the lady made it and it was runny.  There is, of course, no red Jello, no lady. (Monday’s meal was delivered by a Volunteer and it included a ring of fruit filled Jello including some that was red — it was not runny but solid.)

There was another complex delusion that she talked about in a very matter of fact voice a little later in the morning.  I can’t remember the content, just that it was surprisingly complicated and detailed, with no relationship to any bit or piece of the visible reality in which we live.

It was probably a good thing that there was a Volunteer scheduled while I have the periodic lunch with jimmy, a retired casket salesman who is enjoyable to talk with.  It was a good thing for Mary Ann since Volunteer Jacki brought her violin and serenaded Mary Ann while she was eating her lunch.

I finally got to the grocery after lunch today.  It would have been tough to go another day without more of a couple of things (most importantly, Mary Ann’s disposables).

Mary Ann had been asking to get to the dentist’s office for a cleaning since we missed the last appointment.  This afternoon was her appointment.  As always, the cleaning produces lots of bleeding. There are two reasons for that.  One is that she is taking Plavix and Aspirin, thinning her blood. The other is that I don’t do enough to care for her teeth since she has lost the ability to brush on her own.  The Aides do a little to help that problem, but it would be good if I would stop feeling guilty about not doing mouth care for Mary Ann and just do it.  I have put a Chux pad on her pillow tonight so that any bleeding will not get on the sheet or pillow.

This evening Volunteer Edie came to stay with Mary Ann while I went to another choir practice in preparation for Sunday’s Concert.  I enjoy singing, I made the commitment and will keep it, but I am very ambivalent about it for a number of reasons.  The central reason is that I will miss Granddaughter Chloe’s choir concert in Kansas City.  She is 11 years old and sings in a children’s choir sponsored by the University of Missouri, Kansas City [UMKC].  This is one of two concerts in the year.  Last year our Kids included a combination Mother’s Day/Birthday celebration by taking us and the other Grandparents out for a nice meal/dessert afterward.  We are missing out on all of that because I didn’t put the date on our calendar, and I committed to sing in the concert here before I received an email reminding us of the date. I hate disappointing Chloe as well as our Son Micah and Daughter-in-Law, Becky.

Another reason for my ambivalence is that the more I enjoy the singing in the concert, the more I remember what I am missing in my life at the moment.  Singing takes my mind off everything else.  I am completely immersed in getting the notes and rhythms right, being exactly on pitch, interpreting the phrases appropriately, blending with the other singers.  There is no room for awareness of anything else when that is going on.

When someone you love has to be away for a long time, while you long to have a visit from them, a short visit from them also brings with it the pain of knowing you will have to say good-bye again in a day or two, going through the grieving all over again when they leave.  It is almost easier just not to see them until they can come home and stay.  That is the something of how it feels when I do something that brings me joy and satisfaction, something that has no place in my life at the moment.

With enough effort, I could probably figure out the logistics of singing in some choir or vocal ensemble more regularly. There’s the rub — effort.  Serving as the 24/7 Primary Caregiver for someone who truly needs your help day and night, does not leave the stamina necessary to work out those logistics.  The will and the energy to do what needs to be done to get away at scheduled times is simply no longer there.  The role I have here is big enough to take all that I have to give.  Even at that, Mary Ann could/should receive better care (e.g. oral hygiene).

Sunday will include a mass of conflicting feelings.  While I want her to get out and enjoy the music, there will be complex transportation and timing issues if Mary Ann decides she would rather attend the concert than stay at the house with the person assigned from the Agency (a person Mary Ann knows and likes); there will be the $80-$90 it will cost to cover that care so that I can sing in the concert; there will be disappointment at missing Granddaughter Chloe’s concert and how she and her parents will feel about it; there will be frustration that I am not reading music or singing as well as in the past; there will be exhilaration in doing the singing, joy in hearing and participating in making the music that will reverberate in that building (Lutherans can really sing).  There will be the Spiritual uplift that comes with the organ music and instrumentalists and the singers in the choir, a roomful of people of faith in the congregation expressing that faith in full voice.

Right now it is getting late and all that is too much to think about.  For the moment, I just hope Mary Ann sleeps well tonight, and me too.

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 28, 2010

Can’t Get Out? Bring it in.

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Today, we were pretty much home bound.  I had hoped we could get out, but it just didn’t materialize.  As I reflect on the day, I realize how much activity comes to us instead of our going somewhere else to find it.

There were no Volunteers scheduled today, so unlike many Wednesdays, the option to go out on my own was not available.  Mary Ann was tired today and napped at times that kept us here.  We still haven’t made that trip to the grocery I have been trying to get in for a number of days.  Since food has been brought to us recently, we are eating well.  We are on the last package of Mary Ann’s pads (disposable underwear), so tomorrow will have to include a trip to the store.

This morning began with the Spiritual formation group that meets here.  If those folks were not willing or able to come here, I would simply have no Spiritual Formation Group experience regularly. It is both garbage day and lawn maintenance day on Wednesdays in our subdivision.  We have recently incorporated the garbage truck sounds into our spirituality as a metaphor for ridding ourselves of unwanted garbage in our lives — letting go of things that just bog us down and clog our spiritual arteries.

As I was setting up the deck in anticipation of the arrival of the group members, there was an aerial attack on the pair of Mallards in the back yard by another pair.  There was much squawking as the dive bombing hen chased off and flew after the hen already on the tarmac.  The same thing happened with the drakes, with the addition of their fly by almost clipping my ear.

The lawn crew provided weed-eating next to the deck as we had the concluding prayer.  I am sure that we will come up with some sort of metaphoric understanding of to the mowing and weed eating that will incorporate those sights and sounds into our Spiritual Formation.

Again, during the group time Bath Aide Zandra came to the house to provide friendship and help as Mary Ann with through her morning regimen.

By the time the Group was done, Landscaping Tech Sheila had arrived and begun working on our disheveled garden areas.  It is at this point that another venture into bringing beauty into our lives is beginning.  Sheila has presented and then adapted a plan intended to provide more beautiful surroundings at the side and front of the house.  Her original proposal was elegant and well-planned.  Mary Ann and I redirected the project.

Shortly after moving in we had added a berm in the space between our town home and the one next to us in a spot that was in full view when standing at the sink in the kitchen.  The first plan would have returned that spot to sod.  After thinking about it for a while, I realized that we were more concerned about what we see from inside the house than what people see when looking at it from the street.  Now that I am at the sink an inordinate amount of time each day, I am especially in need of having color and activity and growth and change to stimulate my visual cortex.  We can’t get to lots of beautiful places away from the house, so we are bringing them to the house.  That is what all the changes at the back of the house were about.

Stacey came by later today to take the final measurements for the sun room blinds for privacy at night.  That project continues.  Sheila is doing some work in a small back area at the side of the deck to fill out the setting.  The leaves are now out on the trees in behind and beside the waterfall and in the neighbors’ back yards.  The area is now almost completely green and secluded.

Mary Ann’s day was not her best.  She fainted quite a bit this morning and ended up back in bed for at least a couple of hours.  At a late lunch there were a couple of falls without damage to Mary Ann, but our relationship was stressed some in response to them.  From her perspective, she was just doing what she did automatically before the disease took its toll.  From my perspective, she was making choices (twice within minutes of one another) that unnecessarily complicated our lives with substantial clean up and the physical demands of getting her off the floor.

I spent the rest of the time she has been awake sitting a very few feet from her, ready to jump each time she stood up.  Bringing activity and stimulation into our immediate environment helps especially on days like today when even stepping outside is limited.

Hallucinations have continued at various levels of intensity.  We seem to be having less and less of the good, lucid times.  A few minutes ago when I saw her moving in bed, I went in to help her turn so that she is facing the opposite direction.  She said that she guessed we were at the first table.  There were, of course, people here, but she wasn’t sure if they were tables for playing cards or what.

I am not sure what way we are swinging at the moment.  I don’t know if there will be lots of daytime sleeping tomorrow, or much sleeping tonight,. I don’t know if there will be some calm and lucidity tomorrow or hyperactive delusion/hallucination/dreaming going on.  I will find out.

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 25, 2010

Kiteboarding at the Lake

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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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 24, 2010

Not So Good Today

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I had little doubt we were on our way back to confusion last night.  The numerous commode trips returned along with a couple of times just sitting up on the side of the bed.  This morning she accused me of lying to her when I disagreed that when the kids were visiting they had been playing with a ball with fire in it. I let that one go without trying too hard to argue against what she was convinced she had seen.

A television report on the news last night must have found a spot in her mind.  The Phelps family blight on Topeka was in the news since an estranged son was in town on a book promotion talking about his difficult childhood before getting away and moving out of town.  Mary Ann asked about one of the Phelps’s talking with me in another room.  She said she had to arouse me from being sort of hypnotized.

She was not in the intense mode that sometimes comes.  I suspect that may be coming next in the cycle.  She was fairly calm, but still getting up often, unsure why or where she wanted to go or what she wanted to do.

Meals were somewhat confusing.  The spatial problems made her insistence on feeding herself pretty tough for me to deal with.  Food was ending up in lots of places, the spoon digging in spots where there was no food to be found. I was not very patient with her today.  She finally did allow me to help her eat the last of her lunch.

Mary Ann was not ready to head out in the car, nor was she interested in taking a nap.  Sometimes she sat with her head down, sometimes not.  The television needed to be on.  Everything that was showing, at least that she would tolerate, seemed to sort of suck the life out of me.  I could hardly stand to be in the room.  I did a lot of pacing.

I have to admit that it was not a good day for me either.  I had a bit of the feeling of a trapped animal, no alternative within reach with enough draw to grab my attention.  I read emails a bit, did some posting to Quicken.  Reading a book simply does not work for me when there are multiple times attention must return to my primary responsibility.  Some people are good at switching into a deep focus quickly when doing tasks. It is not easy for me to do so. If I do get engrossed in something too deeply, I am afraid I will not be there when needed.

At about 5:30pm, just minutes after she had decided to put shoes on so that we could do my errands, Mary Ann decided that she needed a nap.  The good news was that I was able to spend time on the deck reading some devotional material and just experiencing the moment and the environment. I had the video monitor nearby so that I could check on Mary Ann regularly without having to go in the house every few minutes. The bad news is that she did not get supper and the late nap may result in more awake time during the night.  A short time ago I got her up to change into her pajamas, gave her the bed time meds and a container of applesauce. At the moment, she seems to be sleeping.

I am going to try to find the right music and devotional material now to see if I can continue the restoration of peace begun on the deck.  Some days are just harder than others.

 

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.

 

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