Relationship Issues

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May 16, 2010

Happy Birthday Mary Ann!

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Well, it wasn’t wild and crazy partying, but given our circumstances, it was okay.  After sleeping well last night, Mary Ann got up some time after 10am.  For some reason, when we were finishing with her pills and food (she was already dressed). I remembered a couple of music CD’s we had gotten when Occupational Therapist Karen was working with Mary Ann using rhythmic movements in her therapy.  It is a CD of big band music from the thirties and forties.  Even though we were not born until the early 1940’s, the music was part of our very early history.

I put the CD’s on and invited Mary Ann to dance.  As I have admitted before, I don’t dance.  I can, however, sway.  She laughed at me, as usual.  We stood for a minute or two of swaying/dancing before she fainted from the Orthostatic Hypotension (drop in blood pressure when standing) that has come from a combination of medicines and a compromised Autonomic Nervous System (due to both the Parkinson’s and the Parkinson’s Dementia).

Today did not include the option of going out anywhere since Mary Ann fainted every time she stood up — that is every time!  There was some intestinal activity, which always included a cluster of fainting spells.  I just hung close to her at all times.  If she just stood up in front of her chair to stretch her legs, she fell back into the chair and was out for a time.

In spite of that, the day went better than I thought it might.  She was awake most of the time.  She did not seem to be hallucinating very much at all.  She got good, long phone calls from both of the kids.  Daughter Lisa’s crew sang happy birthday, and both of the girls (5 and 7) had stories to tell about what was going on with them.  Mary Ann was able to respond a little to both Son Micah and Lisa.

My Sister, Gayle, phoned and sang happy birthday also, so Mary Ann got lots of attention.  There have been lots and lots of cards.  She now has a bank envelop with the words “for ice cream only” filled with a total of $60 in cash.  The bank teller wrote that note on the envelop in accord with the note on a $50 check.  I believe there will also be some Graeter’s ice cream from Louisville delivered when Lisa and her crew come to visit in June. That has to rank as one of the best in the world of ice cream.

Don and Edie came over again to deliver some flowers and visit for a few minutes.  Volunteer Coordinator Mary had brought over a bouquet yesterday.  Friend Jeanne called, widhed Mary Ann happy birthday, and arranged for a visit on Monday.

After eating a slice of Glory Days Pizza for lunch (left over), we each had a piece of rhubarb pie (Volunteer Coordinator Mary made it a couple of days ago using Mary Ann’s recipe).  Mary Ann’s piece, of course, had a couple of scoops of ice cream on it.

Mary Ann dozed for a while with her head down on the little table in front of her, but was awake most of the time.  The big band music was on for much of the time.  Later she lucked out and found a couple of episodes of “House,” followed by an NCIS marathon.  We went through birthday cards.  She was not as alert yesterday when I read some to her, so we went through them again.  She was much more alert today.

The wildlife was entertaining to both of us at various times.  Three very colorful Baltimore orioles were in and out of view for much of the day.  It was rainy outside, but only occasional sprinkles.

After some more leftovers for supper, we each had a big piece of the three layer melt-in-your mouth chocolate cake frosted with thick layers of whipped cream and coconut frosting.  I made a pot of Sumatra Badak Rhino Blue Tawar coffee from PT’s. It is a moderately dark roast that fit my taste perfectly.  Mary Ann is not much for the strong coffees that I enjoy.  She prefers Pepsi.

Today, I included the additional half tablet of Seroquel in the morning cluster of pills.  The Neurologist is suggesting we try that addition to see if it might help reduce the hallucinations.  It can cause her to sleep more of the time and increase the fainting, but the fainting had already started before she took her meds and long before the medicine could have gotten into her blood stream. She didn’t sleep as much as usual during the day today.  It is way too soon to draw any conclusions on the effect the increase in Seroquel might have.  Today she seemed to have minimal trouble with hallucinations and more fainting, but the medicine may have had no part in those characteristics of the day.

Mary Ann slept well and for a long time each of the last two nights.  I also have had two full nights of sleep.  I have absolutely no clue whether tonight will be a night of sleep or a night of hallucinations/delusions/dreams mixed with reality, up and down with no sleep for either of us.  I do know which I would prefer.

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 11, 2010

Between a Rock and a Hard Place

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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Almost every moment Mary Ann was awake today, I was never sure who she was seeing or where she thought we were.  She talked to people, the little girl, her Mother.  She whispered to me that there was some woman standing “right there” inside the van when I was trying to give her some medicine.  In the car after coming out of Perkin’s Restaurant, she asked why “he” gave directions to Laramie (Wyoming, the state in which her estranged brother lives).

That is the rock.  The hard place includes two things.  One is that she has continued to faint often.  There are times during the day when it seems more likely, but it can happen any time.  They often result in a subsequent nap.  That is the second thing of the two things in the hard place.  She has slept during much of the day many days.

The medication of choice to control hallucinations is Seroquel.  The most prominent side effect is that it causes drowsiness and can result in lots of sleeping, day or night.  Another concern the Neurologist mentioned is that Seroquel increases the vulnerability to fainting due to low blood pressure (orthostatic hypotension).  By increasing the dosage of Seroquel, the other problems worsen.   If we reduce the Seroquel, the hallucinations would be likely to increase.

As I have mentioned many times before, the medicine that is used to keep blood pressure up, reducing the fainting keeps her blood pressure at a dangerously high level.  Today in the Dermatologist’s office her BP was 208/93.  That is without taking the med to raise her BP so that she faints less often.

We turn one way and face up against the rock.  When we turn the other way, we face up against the hard place. It is a difficult spot in which to remain for very long without beginning to tire of it.

Because of the unique character of Parkinson’s Disease Dementia/Lewy Body Dementia, there is a sensitivity to sedative type medications that precludes the use of any but a very few.  The choices are very limited.  The problem with trying other meds for hallucinations to see if they will work is that the sensitivity of LBD and PDD results in losses that cannot be regained.  We can’t just try things for a while.  Mary Ann is now on the medications that are most recommended for treating the problems caused by PDD/LBD.

This spot between a rock and a hard place seems to be the place we will be living for the indefinite future.  We choose to live in an intentional state of denial, but it is not easy to maintain it.  While I always hope that the latest sign of decline is transitory and better times will return, it is beginning to seem that the better times are long gone.  The Neurologist of someone in the online LBD spouses group told her that some time her husband would have one of his fainting spells and just not come back. Sometimes having a support system that includes lots of information about the disease one is dealing with includes too much information.  Some things are better not to know.

I have rushed to the bedroom a dozen or two times as I have been writing the last few paragraphs.  Mary Ann is hallucinating and pretty adversarial and angry that I don’t respond appropriately to things that simply make sense to me or have no corporeal existence outside of Mary Ann’s mind.  I can only wait until, hopefully, she just wears out and goes to sleep.  She has been in and out of fainting most of the times I have gone to the bedroom to get her back into bed.  In fact she has been vocalizing some while fainting, sometimes acting in a belligerent way while in that state.

This morning I knew problems were beginning.  She was up a number of times very early, and when she could no longer stay in bed, she had that intensity that signals the beginning of the streaming hallucinations.  There was some fainting early on, but Bath Aide Zandra didn’t have problems with her.  After Zandra left, I got her breakfast and pills.  She sat in her chair for a while in pop up mode, but soon put her head down.  Finally, she wanted to lie down.

After lying down, I got her up to go to the Dermatologist appointment she has been asking about for a couple of weeks, often thinking it was the day of the appointment. She was concerned about some bumps she felt on her head.  There were no problems discovered.  The nurse asked Mary Ann what she was doing at one point.  Mary Ann said she was separating her fingers.  It was the thread or gold chain hallucination.

I just headed back to the bedroom again.  She asked if they served breakfast and lunch.  I confirmed that she thought it was a motel.  I tried to convince her that she was in her bedroom.  She responded angrily that I kept moving her from house to house.  I asked if she wanted some applesauce.  She said yes.  Then while I was getting it, she got up, walked around the end of the bed to the area between the beds and fell.  She did not hurt herself, but that spot is one from which it is almost impossible to extricate her.  The only alternative was to lift her straight up and on to the bed.  My back reminded me just how risky that move is.  That  area between the beds is too small to get the lift in and manage to put the sling around her.

I got her around to the side of the bed and started feeding her the applesauce.  She fainted, completely falling into me since I was sitting next to her.  Even when finally she was awake and ready to eat again, I had to hold her up and try to keep her hand away from her mouth so that I could get the applesauce in.  Sometimes when I am feeding her, she moves her hand to her mouth as if she is feeding herself.  I have to try to figure out how to get the food around her hand and into her mouth.  She gets irritated when I push her hand out of the way to get to her mouth.

I finally got her back into bed.  I am sure she will be up again soon.  Needless to say, this has not been one of our better days!  Here we go again — again demanding lifting and shifting and adjusting her in bed. Each time I have gone to help her there has been the same need for the physically demanding help.  This is another one of those times I am wondering how long I will last.

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 9, 2010

Quiet Mother’s Day — A Bit Pensive

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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Mary Ann slept reasonably well after settling last night.  She got up and had breakfast, but afterward opted to remain in her pajamas.  After a time, she just started fainting in her chair.  We managed a trip to the bathroom once, but the second time she fainted in the transfer chair before I could get her on the stool.  She just needed to get back in bed.

While she slept, I did a bunch of simple household chores.  It struck me how much effort is necessary just to do the most basic tasks to maintain a household. That is hardly news to anyone who has had responsibility for those basic tasks.  Having grown up in a household in which Dad did outside stuff and Mom did inside stuff, it has taken a while for me to catch on.

I did manage some time watching the large screen nature show at the back of the house.  I need to correct the pronouns in my last post.  That Oriole is “she” not “he.”  I should have known since she was more yellow than I expected of a Baltimore Oriole.  Mr. Oriole appeared at the waterfall this morning.  He has not ventured to the jelly yet, at least when I have been watching.  Mrs. Oriole has spent a number of times there today.

Mary Ann got up in the early to mid-afternoon.  Given the choice of waiting an hour for me to make a bigger meal or having a sandwich then, she opted for ice cream. You will note that ice cream was not one of the options I suggested.  We both had some ice cream.  I put the baked potatoes in the oven, and after about an hour, I George Foremanned a couple of pieces of sirloin from Omaha Steaks I had marinating in the fridge and steamed a bunch of Asparagus. By the way, I absolutely HATE cleaning the George Foreman Grill!

After eating, Mary Ann watched some television.  Daughter Lisa phoned to wish Mary Ann a happy Mother’s Day and report that some items produced by our Granddaughters would be coming later.  Since we had eaten so late, it was not long before it was time to go to the Evening Service at church.  Mary Ann had forgotten that it was Sunday.  I got changed and we headed over to the Service.

Shortly after we got back, Mary Ann was ready to go to bed.  It is a very cool and gray evening.  I have stepped outside a few times just to take it in.  I prefer the days when Mary Ann is subdued and sleeps a lot to the ones when she is so intense and streaming hallucinations, delusions and dreams confused with reality.  At the same time, on occasion when she is sleeping, there are pensive moments during which I get a glimpse of what it might feel like to be alone.  There are lots and lots of people who have faced that challenge before me.  As any will testify, that there are others does not lessen the impact when it is you.

I choose not to remain long in the pensive times.  We live in a state of intentional denial.  We have enough to deal with in the present.  We will deal with future possibilities when they become the present.  For now, we have each other.  That is our reality.  It is enough.

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?”

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , |
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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

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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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 5, 2010

Clenching Teeth — Bad Idea

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Stress sometimes produces odd markers.  My stress marker apparently is clenching my teeth.  It is a bad idea.  I ended up at the Dentist’s office while Mary Ann was in her Tuesday morning group.  The good news is that the pain is apparently not signaling an abscess.  No root canal!  Yeah!  The bad news is that I am wearing though the surface of my teeth, even some crowns.  It does not bode well for the future.  There are likely to be expensive sittings in a dental chair coming at some time.  For now, a night guard is the weapon of choice for trying to stave off major work for as long as possible.

While there are some obvious stress producers in our current situation, I suspect the problem would be the same no matter what the source of the stress.  The threat of many thousands of out of pocket dental expenses is a strong motivation to use the night guard regularly.

Today was a better day for Mary Ann.  She slept very well last night.  She was alert and participated in her Tuesday morning group.  Volunteer Scheduler Mary took us out to Boss Hawg’s Barbecue for lunch in honor of Mary Ann’s (5/15) and my (4/14) birthdays.  What a treat!  Mary Ann ate lots.  She needed help after a while, but she stuck with it until the food was almost all gone.

Hospice Nurse Emily came by this afternoon.  Mary Ann’s vitals were all fine, but her blood pressure was low this time, 108/64.  Emily commented that she never knows where Mary Ann’s BP will be when she takes it.  Mary Ann is always an interesting and entertaining patient to any health professional who takes care of her.  She is never boring!  I can’t remember what exactly it was she said when getting up from the toilet stool once today, but it was one of her smart aleck comments that brought laughter from both of us.

I talked with the Hospice Nurse about my considering returning the Midodrine to the meds to see if our quality of life might return to something closer to what we had six months ago when Mary Ann took it daily.  It is the med that raises her BP to levels that are not good in the long run.  Since quality is more important to both of us than quantity of days it seems like a reasonable option.  It is within the range of options acceptable to the Cardiologist.  When I talked with Mary Ann about it later on in the day, she said that she didn’t really want to change anything.  She feels it is all working well now.  Looking at it from my direction, it doesn’t seem that it is working well.  On the other hand, it is her body into which the meds are going.  For now, I won’t press the issue.

There were a couple of deck times today and another chapter in the book on St. Patrick’s morning prayer.  This chapter, “Christ Before Me” as well as the one I read yesterday, “Christ Behind Me” have both been thought provoking and comforting.  Maybe more deck time and devotional reading will help reduce the teeth clenching.

Parish Nurse Margaret stopped by with some fresh asparagus from her garden, which I added to the bratwurst and sweet potato fries we had for supper.

All in all, today the scales balanced in favor of clarity and good communication.  There were some times of confusion, but they were less prominent than the last couple of days.  Mary Ann has been especially restless tonight.  It is very late and she still seems to be awake and moving around.  While that does not bode well for tomorrow, tomorrow will speak for itself.

 

May 3, 2010

Confusion Switch Flips On Suddenly

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

 

April 30, 2010

Such Complex Delusions

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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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 27, 2010

A Sumptuous Feast

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , |
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Last night Volunteer Tamara came over and picked up a number of cooking dishes, so that she could bring a supper for us to cook here tonight.  Anybody hungry?  The cooking dish she took was far too small.  When the food came this afternoon, I needed to get the turkey roasting pan from downstairs to hold the roast and vegetables.  The pyrex loaf pan was filled to the brim with a spinach, onions and cheese side dish.  The Jello mold she had picked up from us could not be used since it was barely more than half the size necessary to hold the mult-layered fruit filled molded Jello that came with the meal tonight.  Then there was the ten by thirteen pan filled with a lemon dessert to be cut into many bars.

The veggies went into the oven first at 425 degrees for 30 minutes.  Then the huge boneless pork roast covered in a mustard and herb glaze was placed in the center of the pan with the veggies and that pan was put returned to the oven for another forty-five minutes.  Before that would be done, the spinach dish went into the oven.  At the end of the 45 minutes the roast came out and the veggies went back in for another fifteen minutes as the roast was put in a dish and covered to rest for fifteen minutes before slicing.  During that time the spinach finished cooking and the fresh asparagus she also brought was steamed.

Roast pork, roasted vegetables , a hot spinach and cheese dish, asparagus, a fancy layered fruit Jello and lemon bars all provided a sumptuous feast in our little place tonight.  Had we realized just what magnificent food would be in such quantity, you would all have been invited.  We will have good food for days to come, and I will not have to cook!!!

Mary Ann struggled today to stay alert.  She slept well last night, a very good thing.  She didn’t get up until Bath Aide Zandra came, and she remained very tired during the shower, hair washing and getting dressed routine.  Breakfast was a little more difficult than usual for her to handle.  After some fainting, she ended up back in bed for a about an hour and a half.

After she got up, we headed out to run a couple of errands and bring back some lunch for her.  I most often do leftovers.  For the afternoon, she was again somewhat vulnerable to mild confusion and hallucinations.  I needed to stay close.

As we were finishing supper, Volunteer Tamara returned at the usual evening Volunteer time.  She even did the after dinner clean up as I helped Mary Ann wtih the last of her supper.  That was a wonderful gift.  Then I was able to have some time away this evening (Lowe’s and Barnes and Noble).

Mary Ann has been in bed now for a while, but she is really struggling to get settled. I certainly hope she is able to rest, for both our sakes.

Our Daughter, Lisa, phoned this morning while Mary Ann was with Zandra.  She called to work out plans for a couple of visits to our place, one just after the girls get out of school for the summer and just before they start back toward the end of the summer.  That will give Mary Ann a couple of focal points to keep her interest and attention as the months go by.  The Grandchildren always put things into a healthy perspective, keeping us from seeing our journey only in terms of the two of us.

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.

 

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