February 17, 2010

A Sleep Day

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She went to bed at about 9:15pm last night.  She didn’t stir until about 8am, not even a commode trip.  I had gone to bed early and got a good night’s sleep also.  I got her up then to use the commode, talked about going to her Tuesday morning group while she sat on the side of the bed, still half asleep.  As I suspected, she needed to lie back down.  It is almost 12:30pm, and she is still sleeping.  A few minutes ago, I asked if she was ready to get up.  She did not respond.  I will check regularly now, so that she can get food, meds and a trip to the bathroom as soon as possible.

One of the folks in the online Lewy Body Caregiver Spouses group has made a movie and entered it in the the 2010 Neuro Film Festival on YouTube.  That video can be found by going to youtube.com and entering in the search box 2010 Neuro Film Festival.  Her video is on the second page, titled, Life with Lewy 2010.  There is another video on that page that is painfully funny to those who have been impacted by Parkinson’s. That title is, Parkinson’s Gets a Bad Rap.  I happened upon another video on YouTube titled Parkinson’s Disease — That’s a Laugh.  Check them out.

Mary Ann got up around 1:00pm, got dressed, took pills and with help ate her usual breakfast.  She moved into sitting with head in lap mode after eatng.  She was able to communicate a bit.  There was no evidence of her having hallucinations.

Since she was not done eating until mid-afternoon, it was not long to supper.  I had gotten out some beef fillets from the package we had gotten from Omaha steaks a while back.  Along with broccoli and a baked potato, she ate well at supper.  She even had what was left from last night’s B&R trip for dessert.

Volunteer Barb came to visit for the evening while I had a break.  As far as I know, the hallucinations stayed away during that time.  Mary Ann is in bed now.  How the night will go remains to be seen.

I headed over to Barnes and Noble to find a book that I could sit and read for a while, enjoying a hot chocolate in the Starbuck’s there.  After drinking PT’s coffee, purchased directly from the growers, roasted to perfection here in small batches, Starbuck’s coffee just doesn’t measure up.

I had no intention of buying a book, but I found one that I could not resist.  It is called The Mind of God: The Scientific Basis for a Rational World, by Paul Davies. I thoroughly enjoy reading books that probe the wonders of the laws of physics written by folks intelligent, intuitive and honest enough in looking at the best that science has to offer that they can see the “something more.”  This writer does not conclude the existence of God, but allows that what is implied by the universe and our place in it is something that some might call God.

Since I happen to be a person of faith, I don’t look to this or any other contemporary work to define my view of reality.  I suspect that if/when I finish the book there will be nothing with which I need to disagree to sustain my faith.  In fact, my usual experience in reading such books has been to simply see expanded the wonder and appreciation at what the best of scientific inquiry can bring to my faith.  For me such reading is devotional at least as much as it is intellectual.

I am glad that I got plenty of sleep last night.  Otherwise, I would not have been able to track with the author as I read the first chapter this evening.  It is encouraging evidence that my brain may not yet have atrophied completely!

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.

 

February 16, 2010

A Hallucination Day

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“Watch out for the baby?”  I was warned a number of times not to step on the baby.  She has been talking to people, mostly kids, I guess our Granddaughters, much of the time she has been awake.  She has said things to me in a very rational and matter of fact sounding voice that made no sense to me.  She would sometimes get a little irritated with me that I acted as if I did not understand something so obvious to her.

She did finally sleep last night.  It took a while.  She got up fairly early this morning.  At one point when she got up to use the commode, she asked me how I slept in the van.  then she said something about my wife as if it was someone else.  I verified that she was Mary Ann Tremain and I was Peter Tremain and we were married.  She said she knew that, but somehow I had three other wives — a pretty terrifying thought since it is hard enough work to sustain one relationship. I assured her that one is enough for me, and she is the one.

She was able to stay in bed while I got ready.  Then she took pills and ate yogurt and a little cereal with my help. There was a substitute Bath Aide this morning.  Sue said that Mary Ann popped up a few times while she was trying to get her ready.  It was a little challenging for her.

After Sue left, Mary Ann began the sitting with head down mode.  After a while she was willing to let me take her into the bedroom to lie down.  I tried to rest for part of the time she was napping.  Most times Mary Ann said anything, it was to or about a hallucination.

I got her up for lunch.  It was about 1:30pm or 2pm.  She reluctantly allowed me to feed her, so she got a fair amount of food.  After eating, she returned to the sitting with the head down mode.

By about 4:30pm she decided to lie down for a nap.  I decided that I would insist on her getting up to eat supper to try to avoid the difficulty she had last night getting to sleep when regular bedtime arrived.

At 6pm, I enticed her to get up to eat supper with the promise of my going to get some Baskin & Robbins when Volunteer Jolene arrived this evening.  She ate some supper mostly on her own.  She followed that with about half of the cup of two scoops of ice cream from B&R.

Jolene is with her now, but Mary Ann is continuing to hallucinate and pop up, making it a challenge for Jolene.  Gratefully, Jolene is pretty laid back and unruffled by the challenge.  She worked for many years early in her career at a facility for those with multiple handicaps.  After getting the ice cream, I stayed home tonight to work on this post while Jolene was here so that I might be able to get to bed early.

Especially today Mary Ann has struggled with the time of the day that it is.  When Jolene left shortly after 9pm, she was convinced that it was 8:30am.  When she went to bed, she wanted to lie down in her jeans.  Then after explaining that is was 9:15pm I got her pj’s on.  As she lay down, she asked me to be sure and not let her sleep too long.  She obviously thought it was during the day.  It is interesting that the fact that it is dark seemed not to register in her calculation of the time of day.

I remain pretty confused by the vacillations in Mary Ann’s situation, the speed with which they come, their unpredictability and the fact that this is so different from her situation just three months ago.  Yes, all of this is common to those with the kind of dementia that has emerged, Parkinson’s Disease Dementia, a Dementia with Lewy Bodies.  I still wonder what role the medications have in this decline.

I am moving slowly on reworking a fax to send to the Neurologist, since I want to see if there is any pattern that emerges that would help him make an intelligent judgment on the role of the meds in her current situation.  If we are going to risk changing medications and/or dosages with all the nasty possibilities, I want it to be done with the best information possible.

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.

 

February 15, 2010

A Little Sabbath Time

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This will take a long time to write.  I am heading to the bedroom every five or ten minutes to help talk Mary Ann back into bed after getting up to respond to another dream/hallucination.  It is taking a long time, longer each trip into the bedroom,  to talk her down from whatever it is.

Mary Ann insisted on getting her pj’s on and going to bed at 4:45pm today.  She got up fairly early this morning.  Last night included a few more times up.  At least it wasn’t until after 6am that she starting trying to get up for the day.  Right away this morning she had that very intense lucidity that is laced with a little hyperactivity.  That particular version of lucidity lies just at the entrance to the place where the hallucinations run wild.

I managed to convince her to stay at the bed long enough for me to get myself showered and dressed.  Then we moved quickly through getting her dressed, hair washed, pills taken and breakfast eaten.  Things slowed a bit as she enjoyed a leftover orange/pecan sticky bun.  Almost the first thing Mary Ann remembered this morning was that there should be one left if I didn’t eat it.

Edie came to stay with Mary Ann while I headed up to the lake for some time away.  By the time Edie arrived, Mary Ann had finished eating and had her head down on the table.  At one point while in that position Mary Ann said something about the people stealing money.  I explained to Edie her recurring fear that “the people” are taking money from the loose change jar.  It is still out of sight next to my bed after the time she asked me to hide it so they couldn’t get it.

When I got back from the lake, Mary Ann was resting (in and out of sleep) on her bed.  Edie always brings and then cooks a lavish meal when she comes to stay with Mary Ann one Sunday morning a month.  The food was hot and ready to eat, but Mary Ann was not ready to get up and eat it.  I went ahead and ate.  Shortly after I was done, Mary Ann was ready to get up and eat.

After eating, she soon ended up in front of the television with her head down.  She was awake some of the time.  Later, I asked her if she wanted supper before or after the Evening Service at church.  She did not respond to that, but it was then that she decided to get ready and go to bed.

Last night was not wonderful for sleep.  Tonight has been filled with activity so far.  It is extremely likely that the hallunations today will be compounded tomorrow due to the lack of sleep.  That means that I also will be wanting for sleep.  Maybe this is the week I will end up with a paid person here so that I can get a good night’s sleep.

Given all the ups and down and twists and turns in the last weeds of this ride we are on I was grateful to have a couple of hours away from the house during the daytime hours. The need for Sabbath time is not exclusively for people of the Judeo-Christian tradition.  Whatever word is used for it, the fact that we have come into existence  with the need for sleep suggests that there is need for rest whether rooted in God’s creation of us with that need and calling it sabbath, or a need that emerged over aeons of evolutionary change (or both).

I think everyone needs some sort of intentional time for re-grouping, renewal time, time to think and process events, time alone, time to stop the stream of thoughts filling our head, and allow time to be quiet, time for intuitive connections to be made, the ones outside our power to force solutions to problems.  I certainly need such times.

Again today, the timing of Mary Ann’s needs frustrated plans to attend Corporate worship (worship with a community of people).  This morning at the lake I had some sabbath time, not corporate, but nonetheless sabbath time.

Of course the natural environment there speaks loudly to me of a connection with a Creator who has chosen to love me unconditionally.  The Eagles were fewer in number but still entertaining.  One caught and ate his lunch within binocular distance of me.  There were ducks and geese and gulls.  Blizzard conditions gathered power for a time as I sat in my warm van.

I read from Weavings, the Spritiuality Journal to which I subcribe.  I pulled out the Ingantian Retreat book that I ordered and spent time reading the next week’s suggested activities.  As usual, there were suggested Scripture references.  I read some of them and found them very meaningful.

I put on a CD of Medieval Music.  Anyone who studies music history discovers quickly that most early music is church music, or has its roots there.  The CD of Medieval Music is included words and themes that supported my sabbath tradition.

Since Mary Ann went to bed so early, I had time to put on the last Celtic Woman DVD from PBS.  Because of my experience a couple of weeks ago with a CD by one of the members of that franchise, I have realized how many of the songs sung by that group have lyrics and themes that emerge from my Spiritual tradition.  It makes sense, since the religious tradition of the Irish, at least after the early Celtic Paganism practiced by the Druids, is a just a different branch of the same tradition.

Putting the bits and pieces together provided some sabbath time today that has helped.  While corporate worship is an important part of any healthy sabbath experience, the bits and pieces helped keep my feet securely planted in the unconditional love that provides the support I need to deal with all that daily living brings.

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.

 

February 13, 2010

Hopelessly Confused — Me, Not Her

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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I need to find some synonym for “confused.”  I wonder how many of the posts I have written over this almost year now of writing that have the phrase “hopelessly confused” in them.  Again today I am hopelessly confused.

Mary Ann settled last night after a few signs of restlessness. Oddly, in one of those restless moments, I came in because she had been moving around in bed, seeming to be ready to hop up (as seen on the monitor while I was at the computer).  She asked me something about where I was going to go.  I don’t remember the exact words.  I told her I wasn’t going anywhere and asked what brought her to ask that question.  She said that she had been thinking (or dreaming) that I was going to divorce her.

I told her that she was not getting rid of me that easily, and that it was not even a remote option.  I wondered from where the thought had come.  Even in my most frustrating moments, when my words were far from sweet, that was never a word used or even implied.  As different as we are in some ways and as many times as we were not pleased with one another in our 44 years of marriage, that was never a realistic option.  I make no judgments on those whose circumstances became so difficult that divorce was the best option in a bad situation.  Our conflicts and frustrations never reached the level of raising that as an option.

What causes me to be hopelessly confused at the moment is that, after working on the sheet to fax to the Neurologist about changing meds to control the bouts of hyperactivity and streaming hallucinations, Mary Ann has been subdued and sleeping a lot.

After our conversation eliminating divorce as an option, she settled in for the night, and the morning and into the afternoon!  She has gotten up seldom to use the commode.  She slept until almost 10am (okay with me!).  I helped her to the commode and got her dressed.  As soon as she was dressed (while we were finishing) she started trying to lie down again.  I took her blood pressure (210/120), and then she just lay back down in the bed.

At about 1:15pm, she was moving a bit, so I asked if she wanted to sit up.  She half-heartedly agreed that she did.  I got her to the bathroom and out to the dining room for pills and yogurt.  As soon as she was done with the yogurt, I asked if she wanted cereal or lunch food next.  Then I asked if she was still hungry at all.  She said that she was tired.  She wanted to lie down in bed again.

It is now 2pm and she is resting peacefully.

It is now 3:30pm.  I sat her up to take her mid-morning (I know!) pills, take her to the bathroom, change her pad (disposable underwear), and get her jeans on again.  I asked if she was hungry.  She said no.  I asked if she would like to come out into the living room and watch some television.  She said she wanted to go back to bed.  That is where she is.

It is now 8:30pm.  I got Mary Ann up (she was reluctant) at about 5:30pm.  She was not hungry, but after sitting up for a while, she agreed to eat some supper.  I cooked and sliced up a bratwurst for her.  She likes them and they are easy to eat in that form.  She managed to spear them with the fork and get them to her mouth on her own.  She had a chip or two and some Pepsi.  Then she ate a dish of ice cream from the freezer with very minimal help from me.  She had some fairly normal intestinal activity.  She then sat in the chair in front of the television, but after a short time of sitting up, began leaning forward on her lap again.  At about 8pm she decided it was time to go to bed.  I cannot imagine that she will sleep the night after sleeping most of two full days and nights.

I now have no idea what I would write on the sheet to fax to the Neurologist.  What I wrote Wednesday does not reflect what is going on now.  If meds are changed to calm her down, she hardly needs that.  If meds are changed to perk her up, the wild hallucinations and hyperactivity might return with a vengeance.

By the way, I expect the hallucinations and hyperactivity to cycle back in at some point. I dread that time.

She hasn’t been fainting but seems likely to do so again judging from the past.

Everything she is experiencing, including the vacillations from one extreme to the other are talked about frequently by those in the online group of Lewy Body Disease Spouses.  That does not prove that Mary Ann’s current vacillations don’t have to do with medications, but it does suggest that all this is just part of the deal. It also helps take the pressure off, suggesting that what I do or do not do as problems arise probably does not have all that much power to change things either for the better or for the worse.  This is outside my power to fix.

For someone who has been a planner who struggles with changing quickly from workable patterns, this is madness on steroids!  At the moment, as long as I accept that things may change in a heartbeat, Mary Ann sleeping a lot and remaining fairly subdued when awake makes caregiving doable.  I lament the loss of having more time that she is alert and communicative, but I am grateful for being able to continue to care for her here without going crazy.  If/when the hyperactivity and streaming hallucinations return, it will take about fifteen minutes for me to conclude again that I am in over my head.  What a ride!

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.

 

February 12, 2010

Only Three Months Ago

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Only three months ago we went on a trip to Hot Springs, Arkansas.  We stopped in Oklahoma City on the way to help John celebrate his 60th birthday.  We had a wonderful three days, even though it rained part of the time.  The trip back home included an overnight stop in Eureka Springs, where we visited the Thornton Chapel.  It was a very enjoyable trip.

We returned Friday night.  Saturday afternoon, Mary Ann woke up from a nap with her chest hurting.  We went to the Emergency Room and ended up spending three days in the hospital, getting fluid out of her system to relieve a relatively mild problem with Congestive Heart Failure.

Even though there had been no problem medications given to her while she was there, nothing other than lack of sleep and the distress for Mary Ann of being in the hospital, Mary Ann went home very confused and weak.  She spent the next four days sleeping.  Slowly she regained some alertness, the ability to feed herself again (most of the time) and returned to maybe 75% to 80% of where she had been before the hospital stay.

Three months later, she is hallucinating most of the time she is awake.  She is either awake half or more of most nights, confused about where she is, reacting to dreams and hallucinations, unable to distinguish between them and reality. She has not been able to sit up in a chair.  Even with the safety belt on the chair she hangs almost falling out of it.  She was finally willing to lie down in bed and watch television.  For the last hour and a half or so she has been lying in there mostly awake, taking things not visible to me and putting them in her mouth.  She can only on occasion feed herself.

This morning she told me about the hippopotamus.  She admitted that it was probably just a dream.  I was encouraged a bit that she spoke as if she knew it wasn’t real.  We were trying to find a Kleenex that had fallen in the water, and a hippopotamus appeared.  Then there were eight, she counted them then told me the number.

It is hard to absorb so much change in such a short time.  I am certainly not done challenging the medication regimen to see if there are changes that might help.

The afternoon today has gone a little better.  The hallucinations have continued but at a less intense and distressing pace.  She has had her head down most but not all of the time.

Lunch surprised me in that, while she said she did not want me to help her eat, she accepted my help anyway.  I had made a boxed pasta salad I found in the cupboard.  We happened to have some of the suggested optional additions in the house.  I did not expect her to eat it, but she was interested in tasting it.  She ate a large quantity of it.

At supper, after she allowed me to help, she ate a reasonable amount of Mary’s pork chops from the freezer and some of an Uncle Ben’s wild rice side dish.  Immediately after supper, we headed out to get my coffee refill (Mary had delivered a cup earlier today), and we got some B&R.  She managed to eat part of the two scoops on her own and then let me help her get the rest.  She had begun spending more time with the hallucinated food and the ice cream was melting.

The Cardiologist’s office called in response to the information sheet and questions concerning Mary Ann’s high blood pressure.  One question I asked was: Is there any medication that is safe to use PRN (as needed) to lower her BP when it is far too high?  The answer was, no, nothing that would not risk causing the BP to either bottom out at too low a level or rebound to too high a level.

The other question concerned the use of Midodrine when she started fainting or her BP got too low (both numbers lower than 100).  I wanted to know if I could give that to her PRN as long as the dosage and timing were in the range we have used in the past couple of years.  To that, the Cardiologist said, yes.  Those were the answers I expected.

I shared with Angela, ARNP, who made the call to me, that I was not very concerned at the moment with the fainting.  Mary Ann is almost never walking on her own any more, so the risk of hurting herself in a fall is lower.  At the moment, the seat belt on the transfer chair is most often connected to keep her from falling forward out of the chair, or she is at the table in the heavy chair with the arms, very difficult for her to get out of on her own.  If the fainting occurs on the commode, as has often been the case, she usually remains there, and I am always close, able to get to her and hold her up.  Her BP was high again this morning.

Today went all right from the perspective of my ability to handle the situation as a Caregiver.  For a time, probably between one and two hours last night when I first went to bed, the hallucinations and energy level were pretty tough to handle.  She could only lay back down sometimes for a minute or so, getting up again with no awareness that we had just been up and worked her back to lying down.  That would not be bearable on a continuing basis.

She did not have a long nap in which she was sound asleep today.  My hope is that she will be tired enough to sleep through the night tonight.

One matter that cropped up on Tuesday may demand some rethinkning of the use of one of the tools we use for creating a safe environment.  The Lifeline speaker phone sent the recorded message asking us to test the Lifeline button.  I brought it out for Mary Ann to punch.  She simply could not get it punched.  The coordination needed to get her thumb in exactly the right spot and the strength to push it hard enough to set it off just were not there.  She would never have been able to get the button pushed on her own.  I guess I need to check to see if they have something that is easier to use.  I am considering the other alternative of wearing it myself.  That way if something starts happening to me, I can push it myself, and, of course, I can push it if something happens to her.  My memory is the problem with that idea.  Remembering to put it on is one problem.  The other is remembering to take it off when I leave the house while a Volunteer is with Mary Ann.

At least today, I have not had to resort to the language of the Na’vi (see last night’s post).

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.

 

February 11, 2010

Catch up Day

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The lack of sleep finally caught up with Mary Ann.  Last night, it took her a while, but finally, she settled.  She slept through the night with only a couple of commode trips.  She got up early.  I was hoping she could sleep a little longer since Wednesday is the weekly 7:30am Spiritual Formation group. 

Since she got up at about 7am, I assumed that since there was no morning Volunteer I would need to stay with her upstairs, eliminating my attendance with the group in our downstairs.  While it did take a long time to get her needs met, pills and food and television in the bedroom set, I was able to get downstairs.  I had to head back up a few times.  I take the monitor downstairs with me so that I can see if she is secure in her chair in the bedroom.  That way I know when I need to go up and help her.

The hallucinations were less intense, and, while she was up from her chair a few times, she finally settled there and just put her head down on her lap as has been so when she is awake, but not in hyperactive mode responding to hallucinations. 

When Bath Aide Zandra came, she had some difficulty getting Mary Ann to sit up enough to get her through the bath and hair wash routine.  When I came in to put on her Exelon patch, she could not sit up at all and was hanging on the edge of her chair.  Zandra had tried to use the seat belt on the chair, but that was not working well. 

As soon as they were done, I helped Mary Ann back into bed.  That was at about 9:45am.   Mary Ann slept for six hours!   There was a new Volunteer who had asked that I stay while she was with Mary Ann since she was unsure of being able to handle her physically.  Doris ended up looking at magazines for the entire time of her stay from 11:30am to 2pm. 

I managed with great difficulty to give Mary Ann the mid-morning pills.  I gave up on the next set.  I had not caught Zandra early enough to ask her to put a nighttime disposable on Mary Ann.  I knew that there would be leakage to deal with by letting her sleep so long.  First of all, she was sleeping so soundly that there would have been no way to get her up sooner.  I talked with her, urging her to get up and go to the bathroom a couple of times.  She just couldn’t.

Given how hard it has been to deal with her current level of confusion and the intensity of her hallucinations, I was grateful to have a rest from it.  I hoped that the combination of the a night and day of sleep might help diminish the hallucinations and hyperactivity. 

When she finally got up a little before 4pm, she was able to function better, hallucinations somewhat subdued and relatively calm.  The hallucinations were still active, just not as intense. 

I was able to help her eat a half sandwich.  She ate a few chips and drank some Pepsi.  She sat in the chair by the television for a while, bothered some at first by the hallucinations.  Then she put her head on her lap for a time.  I reminded her about some left over B&R ice cream she had not finished yesterday.  She ate some on her own and then let me help her finish. 

She headed to bed at about 7pm.  It is hard to know whether tonight will be part of the catching up time, or a restless one since she has slept so long in the last twenty-four hours.   She has been up a number of times already, responding to hallucination/dreams, once intending to get up for the day.  The time then was 8:50pm. 

I spent some of the time Doris was here working on a fax to send to Dr. Pahwa, Mary Ann’s Neurologist at KU Medical Center.  I want to see what tonight and tomorrow bring so that I can add that to the informaiton on the sheet.  I am asking him if it would be appropriate to do a review of her meds with an eye toward adjusting them — hoping, of course, to reduce the hallucinations. 

One side note: while it was good that I also got a little more sleep last night, I did not manage any daytime sleeping to do some catching up of my own.  The next three days do not include any time with Volunteers here.  If the next few posts seem to be written in Na’vi (a tribe of the native population on the planet Pandora in the movie Avatar), you will know that sleep has been elusive, and hallucinations intense. 

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.

 

February 10, 2010

Unrelenting Hallucinations

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The hallucinations are now a constant presence.  All the time Mary Ann has been with me, she has been actively hallucinating.  Last night she was up at regular intervals, always hallucinating.  I had to talk her into lying back down.  She tried to get up for the day beginning at about 4am.

It has been harder to do everything we normally do.  Putting clothes on is more difficult since she is having trouble connecting on what leg to put where or how to hold her arms so that a shirt can be put on.  Often she wants to know why we are doing one thing or not doing another, often unsure what time of the day it is.

I knew it would be impossible for her to stay seated and safe while I took a shower.  Before drying my hair, I went out to check on her.  She was moving the lift out of the front door area.  When I came up she looked down the hall toward the office saying something about my mother, as if she was lying there. I don’t think she would head out the door of the house, however, I cannot rule out completely that possibility.

When finally I was finishing getting her ready to go to her Tueaday morning Bible Class, I mentioned that that is what I was doing.  “Bible Class, that will be somethign new,” she said.  At that moment, she had never heard of the group she has been meeting with for years.  During the Bible Class, apparently she was making the eating motions she often does, picking up imaginary pieces of food and putting them in her mouth.

There simply was not a waking moment that was not filled with hallucinations and the need to deal with them.  Mary (who schedules Mary Ann’s Volunteers) came over for a while to visit this afternoon.  Most of the time Mary was here, Mary Ann was in her transfer chair with her head down, close to sliding off on to the floor.  At least we were not up constantly chasing hallucinations while Mary was here.  Mary Ann decided to go and lie down toward the end of Mary’s visit.

Even when she lay down, she did not actually go to sleep.  Starting while Mary was still here and continuing until supper, she was in bed, but up and down as she is at night now.  If not very helpful to Mary Ann, at least the naps in the past have given me time to go to the computer, or just vegetate for a while.  Not this time.  She demanded my full attention and has done so every waking moment, as well as very many times during the night.

While, I, of course, am also in need again of some good nights of sleep, my being rested will not help in dealing with the level of needs she has now.

Last evening I enjoyed a wonderful break.  There was a local Audubon Society program at the library.   Volunteer Shari happened to be scheduled in the evening covering the time the program was held.  This was only the second time I have been at a local Audubon Society event of any sort.  The last time I came and went with no conversation, almost anonymously.  This time I knew someone who worked with the presenter and the one who introduced him.  Not only that, for fifteen years at a church in the Kansas City area, I had ministered to the family of the presenter’s uncle.  Those connections broke the ice, so I got to enjoy lots of conversation time at the end of the program.

As I was preparing to leave for the program last night, I realized just how much I needed time away and something distracting from the intensity of our situation at home at the moment.  This morning as the time for Mary Ann’s Bible Study was approaching, I was concerned about the uncontrollable stream of hallucinaitons, how that would play while she was with the group.  The weather was not good, as snow was falling at a far more rapid pace than predicted, making the side streets difficult.  There was plenty of reason not to take Mary Ann to her Bible Study.  She certainly seemed unaware of it in the midst of the hallucinations.

I just needed to get her there so that I could have another break from the intensity.  I knew her Truesday morning  group would accept her whatever she said or did.  I left my cell phone number with Mary, who sits next to her in the class, just in case Mary Ann’s words or actions were becoming a problem.

There seems to have been a transition from finding things to do when Volunteers come so that I will be more effective over the long haul, to needing the break just to survive another day.

I will be interested in how tonight goes.  Mary Ann has to be exhausted from all her activity day and night with no nap time to speak of in the last thirty hours or so.  She has needed my participation a number of times already tonight since she lay down two and a half hours ago.  The hallucinations have continued. It does not look good at the moment for any uninterrupted sleep tonight.  Assuming there is not a good night’s sleep for me either in the next couple of nights, I will need to try again on the paid overnight help.

I had better get to bed.  I am going to bed earlier and earlier in hopes that I can squeeze some sleep in before the worst of the night time problems emerge.  So far it has not been much help to get in there early.

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.

 

February 7, 2010

High Flying Blood Pressure

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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About 4am Mary Ann was up.  Then again once an hour until a little before 8am when we got up for the day.  There was some of the intensity that can develop into hallucinations and hyperactivity, but this time it did not get out of hand.

I suggested that after I wash her hair we should head to Perkin’s, where she always orders some pancakes and a couple of slices of bacon.  She liked the idea.  She did have juice and yogurt with her pills as usual, just not the bowl of cereal.  It took a while to get the morning chores done today, so it wasn’t until about noon that we actually headed to Perkin’s.  Then we headed to the grocery.  Even though I had a list, we ended up with more than intended.  Gratefully, it was all things that we routinely use.

During the morning, I began taking her blood pressure every hour or so.  Her blood pressure had been so high and the Cardiologist’s office on Thursday that it was pretty concerning.  Her morning meds included a whole Midodrine tablet with the purpose of keeping her BP up so that she doesn’t faint, on account of the Orthostatic Hypotension that has given her such difficulty.

I started at 8:17am, 220/115.  Then ranging from one hour to three and a half hours apart after that her blood pressure measured, 200/110; 160/85; 185/100; 200/100; 200/105.  I took it one other time when it the systolic was 200, but I didn’t get the diastolic.

I could not bring myself to give her even 1/2 of a Midodrine tablet for her midday and suppertime doses.  I know it is not good to stop meds cold turkey, but it just seemed crazy to give her meds that raise her BP when it was already dangerously high.  One thing that caught my ear was the Cardiologist’s ARNP mentioning the fear of a massive stroke.  I had mentioned that Mary Ann already had a stroke.  Angela responded immediately with that concern.  Mary Ann’s stroke was not a bleed, but a cluster stroke (bits of plaque, probably from the ulcerated lesion on her carotid artery).  Nonetheless, it is hard to accept blood pressure that high without major concern.

The last couple of days there has been some swelling of her feet.  She has not had that problem very often.  When she has had swelling it has gone down the next day.  Two days in a row catches my attention. She has not had the heaviness in her chest and the ARNP, Angela, did not hear any crackling in her lungs, the sign of problems with fluid build up.  I need to remember to weigh Mary Ann in the morning to see if she has gained any weight.  That is another of the signs of potential congestive heart failure.

Today, the hallucinations have emerged a bit.  When she started eating tonight’s two scoops of Baskin & Robbins, she asked Ashy if she wanted any.  She saw our youngest Granddaughter sitting in the transfer chair a couple of feet away from her. That Granddaughter is currently living in Kentucky, not in our dining room.

One of the choices we have to make for the remodel/addition of a Sun Room at the back of our town home will be vertical blinds to cover twelve feet of glass for the sake of privacy.  Stacey brought a sample book of blinds that seem ideal.  Mary Ann has gotten in her mind that there is another sort of blind that would be better.  The problem is, it does not exist.  She looked through the latest Martha Stewart magazine and has become convinced that she sees there what we should choose.  She said there are many examples throughout the magazine.  I paged through the entire magazine with her. There were a couple of pages that had what she decided she liked.  They were pictures of an open porch with no blinds, just greenery, vines and bushes in the yard the porch is overlooking.  Then on another page she pointed to some large pictures of pink and red nail polish she said were the weights at the bottom of the blinds.

I could do nothing but tell her that we could not find blinds that exist only in her mind but do not exist in a way that we could actually buy and install.  This one is going to be tough.  I have absolutely no doubt that as long as we live, she will  routinely mention that we did not get the blinds she wanted for those windows and sliding glass doors.

Mary Ann’s ability to feed herself simply was gone today.  At breakfast, I assisted her as she worked to get the pills into her mouth.  I fed her the yogurt and held the cup and straw to her mouth.  At the restaurant at lunch, after I buttered them, cut the pancakes into bite sized pieces and put syrup on them, she got the fork in her hand with my help and was determined to eat the meal herself.  After an interminable amount of time, in which I had long since eaten my entire meal, she was still frozen in place with her hand lying in the pancakes, holding her fork wwith her head down near the plate.  On occasion she tried to get the pancakes up to and into her mouth, but no pancakes ever remained on the fork long enough to make it in.

I offered to help a number of times.  A couple of times I moved her hand with the fork in it so that some pieces were stuck on the fork.  She still could not seem to get them to her mouth.  Finally, she agreed to let me put each fork full into her mouth.  I did the same with the bacon, and with the straw in her Coke.  She ate most of the food on the plate.

At supper at home the same thing happened, she could not get the food to her mouth.  What seems strange to me is that she refused to let me help her even though we were in a completely private setting.  She ate almost nothing.  When I returned with the ice cream from B&R, she could not manage that on her own either.  After a while she did let me help her eat the ice cream.  I can only guess that she really likes pancakes, bacon and ice cream, so she allowed my help.  She was not so fond of the ham and cheesy potatoes at supper, so she was not so motivated to accept the help.

After getting back from the grocery this afternoon, I worked on filling the pill containers for the week, while Mary Ann watched television.  Her head was hanging on her lap much of the time.  One of the times I came over to help her sit up, she said one of the things that always triggers feelings of guilt and some helplessness.  I don’t remember her words exactly, but message was: I am bored sitting here all the time doing nothing but watching television, and I am just wasting away.  The implication was: you aren’t providing me with enough activity and stimulation to provide a decent quality of life for me.

I have talked about this in earlier posts.  I do feel guilty about not providing her with more attention and engagement.  My rationalization is that my life already revolves around her wants and needs all day every day and all night every night.   There are two truths that sort of intertwine as I process what she said.  One is that I really should do more to engage her attention and improve the quality of her days.  The other is that she has Parkinson’s Disease and Parkinson’s Disease Dementia and there are resulting consequences and limitations that I cannot fix.  I cannot give her the life that has been taken from her by the disease.

One goal in processing this issue is to keep my feet to the fire to try to come up with things that will keep her interest.  My hope was that the lunch out and the trip to the grocery would help.  Tomorrow I hope to get both of us going early enough to make it to the 11am worship service followed by a meal out at a nice restaurant that we both like.  Then later in the day will come the Superbowl.  She loves professional football and will enjoy watching the game.

The other goal in processing this issue is to accept my own flaws and imperfections and let go of the guilt and frustration that I am not doing more.  This has actually been a better than average week in one regard in particular.  I don’t think I have said a cross word to Mary Ann this week, nor have I felt like doing so.  Sunday morning’s experience seems to have had some residual effect.  I have no illusions that the change in attitude will remain, but it has felt good to set Grumpy Caregiver aside for a few days.

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.

 

February 5, 2010

Change is the Only Constant

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Hallucinations ruled until about 1am or so last night.  Then she slept through with only one or two commode trips until around 11:15am this morning.  I didn’t get up unitl 9:30am.  Nothing ever stays the same.  Yesterday that was not a good thing.  Today it was a good thing.  She gave very little indication of having hallucinations.  She was awake most of the day until she went to bed tonight at about 8pm.  I will not presume to guess what tonight will have to offer.

After Mary Ann got up and took pills with some yogurt, we began talking about lunch already.  I suggested the possibility of going out, listing a few of her favorite spots.  She did not really seem interested.  I am wondering if the need for me to help her eat is beginning to diminish her interest in eating in public.  Some point at which she seems especially sharp, I will ask her about that issue.

I offered to make scrambled eggs and bacon.  She took me up on that offer.  As I was getting the eggs out, I noticed the untouched left over baked potato from a couple of days ago. I realized that would make great fried potatoes.  About a thousand dirty pans, dishes, pieces of silverware, cooking utensils, and bowls later, I delivered Mary Ann, two scrambled eggs, seasoned with parsley flakes, garlic and onion powder, salt and pepper, covered with shredded cheese that had melted on top, home made bread (Maureen’s) toasted and buttered, fried potatoes and onions, two slices of thick bacon, all served on a warm plate.

Have I gone crazy???  It all started with sighting that potato.  Then I fried some eggs for myself, which I covered with the wonderful Peach Salsa that I order by the case from Texas.  From the time I started cooking to the end of cleaning the thousand dirty items or putting them into the dishwasher, wiping off the stove and counter, must have been close to two hours.  This cooking business with all the accompanying cleaning up duties remains on the outer edge of my domestic capabilities.

Gratefully, Maureen had brought for the freezer some very tasty vegetable beef soup to go with the home made bread.  That was supper.  Mary Ann needed help with that, as well as some help with the two scoops of ice cream from B&R that we had picked up from there on the way home from the late afternoon doctor’s appointment.

While our visits are usually with the Cardiologisit himself, today we met with Advanced Registered Nurse Practitioner [ARNP] Angela .  She had seen Mary Ann once when she was in the hospital last fall.  She knows her case well. It was especially comforting to hear from her that they (she and the Cardiologist) often talk about our situation.  They appreciate that we are traveling a very narrow road of functionality, playing meds that do opposite things against one another to get a result that allows us to survive.

It was scary today when three blood pressure readings at different times in the appointment all were in the mid-200’s over the low 100’s, even when she was standing.  Because of her Orthostatic Hypotension (low BP when standing up), normally the standing reading is much lower. Not so today.  The fear, of course, is a massive stroke, as well as long term damage to her heart and kidneys.  We all know that.  At home the readings have been in the 160 to 180 over 90 to 100.  If we reduce the Midodrine that Mary Ann takes to raise her BP, she starts fainting.

I am going to reduce the dosage of Midodrine a little (cut the noon pill in half) to see if we can do so without resuming the fainting.  One irony is that the Seroquel we have been raising to reduce the hallucinations, has the side effect of increasing the likelihood of fainting. Another irony is that Mary Ann is taking a heart medication after her heart attacks a few years ago.  That medicine’s purpose is to reduce heart pain by lowering blood pressure.  Another of Mary Ann’s Parkinson’s meds (to reduce the dyskinetic movements caused by another Parkinson’s med, the main one) can cause hallucinations and fainting.  The main Parkinson’s med can cause hallucinations, fainting as well as the dyskinetic movements.  Without that med, Mary Ann cannot move at all.

As the primary Caregiver, it is my job to observe and help inform the doctors prescribing these medicines, since I am with her 24/7.  I have been given permission to adjust the Midodrine and the Sinamet (the main Parkinson’s med) within certain limits as seems appropriate.

The doctors have no clear insight into how much of the problem with hallucinations is caused by medicine and how much by the disease process (Lewy Bodies on brain cells).  They don’t know how much of the fainting problem is the disease process and how much the meds. Both the disease process and the medications produce the constipation, as well as other non-motor symptoms.

My head starts to swim when I try to think through the effects of all the meds with the goal of suggesting a workable balance of all of them.  The truth is, the doctors and pharmacists are no better equipped to find that balance, since they don’t see the effects on a day to day, hour to hour basis.  When we have raised or lowered dosages of meds, Mary Ann has not always reacted the same way in adapting to the change.  Sometimes, as with the Seroquel, the change comes, and then leaves quickly, leaving no clue as to how to proceed.

For whatever reasons, the last part of last night and this morning have included sleep; today Mary Ann was lucid and did not seem to have strong hallucinations; she ate tolerably well and has been sleeping fairly calmly for the last couple of hours.  I have no idea what will come between now and the morning, nor can I even begin to guess what tomorrow will bring.

There is one note I would like to add.  It may change tomorrow.  It is likely to change soon.  Since Sunday morning’s powerful experience, I have not felt angry with Mary Ann at behaviors that frustrated me in the past.  I have been far more accepting of the challenges in caring for her.  The feelings of irritation may return soon, but for the moment, caring for her has been less draining emotionally since I haven’t spent so much time feeling angry and frustrated.

That observation makes me wonder how much of the irritability emerged from simple grief over what the disese has been taking from her and from us for twenty-three years.  Again, there is no predicting how I will feel tomorrow or the next day about behaviors that have been frustrating to me in the past.  For the moment, there is a peace and a calm that has been missing for a long time.

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.

 

February 4, 2010

Too Good to be True

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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Three nights are better than none.  Mary Ann was up once every two hours last night.  That is good measured by past standards, but disappointing in light of the hopes raised by three nights of sleep with only a couple of interruptions each night.  She was up and ready to go at 6:30am this morning.

There were a couple of Volunteers this morning.  Two of the three other members of the Wednesday morning group could not make it this morning, so Paul (the other of the three) and I met for coffee at PT’s (of course).  Then I spent some time sitting in the car listening to a remarkable vocal ensemble called Anuna (performed in Riverdance).  I checked out a particularly meaningful Bible Passage.  Then I walked a little over a mile at Cedarcrest.

When I returned, Mary Ann was napping.  After a while, she ate the leftover Seafood Tortellini from yesterday’s lunch.  While she was eating she said “where did you get that” while looking over my shoulder.  I asked her who she was talking with.  She said it was her Mother (who has been dead for many years) who was holding a doorknob in her hand.

There were some intestinal blowouts that suggested the onset of serious diarrhea, but they subsided after a while.  I will spare the details of those challenges.

As the day wore on, there were a two or three more quick comments that seemed to reflect the presence of a hallucinations.  She spent much of the afternoon with her head on the table.  I gave her the stuffed frog, on which she laid her head.

During that time a friend came over to talk with me about a project on helping people make meaningful plans for their own or a family member’s funeral.  Having done countless funerals over the years, I have seen what helps and what does not help when going through such a time.  It felt good to be able to talk about some of those experiences and discoveries that came from them.  It is a nice feeling still to have something to offer.

Mary Ann spent the rest of the afternoon with her head down in her lap, on the stuffed frog.  She manage to eat a little, very little for supper.  With the new Baskin and Robbins now open, I put the Lifeline button next to her head as she lay it on the table after supper, and headed off to get ice cream for her so that she would have enough in her stomach to last the night.  Yes, of course I wanted ice cream for myself — did you even need to ask?

I decided to write a request on Facebook that anyone who can do so, get ice cream at that B&R and tell them Pastor Pete sent them.  When I stop back in a few days, I will be curious to find out if anyone actually did so.  It can’t hurt to have the owners of the B&R as friends!

I have to say that it has been very disappointing to see an end come to the good days and nights so soon.  I was hoping we would get weeks or months rather than just days out of the new dosage of Seroquel.  I was not at the monitor for a bit a few moments ago and heard the telltale thump.  She was on the floor next to the bed but not hurt.  When I helped her to the commode, she suddenly got an alarmed look on her face and told me not to step on the baby.

Fifteen minutes later she was up again on the side of the bed.  I went in to see what she needed.  She said, “What are you doing here at school.”  When I asked what school we were at, she said it was Granddaughter Ashlyn’s school.  Then she suggested that she get dressed to help her get oriented.  I explained to her that it was 11:10pm, and everyone else is in bed, so it would not help her get oriented to get dressed.  She decided to use the commode, even though she used it fifteen minutes earlier.  She is lying down in bed again, but I don’t expect it to be for long.

She made it almost an hour.  This time she was on a ride in the car looking for a house, looking at a parsonage.  There were some banshee eyes (not scary to her) that seemed to be like the 3-D glasses from the yesterday’s viewing of Avatar.  Didn’t I have to pick up the kids.  The raccoon was there (first she called it a porcupine).  She said that this looked like her bedroom.  I showed her the quilt on the wall again to assure her that it actually was our bedroom.  At least so far tonight, she has not been as agitated as she was last week.  Unfortunately, it is likely that if she gets less sleep than she needs in the next few nights, that intensity will return.

More than one of us in the online group have compared the rapid twists and turns and reversals of fortune that come with this sort of dementia to torture.  Each of us has our sources of strength and wisdom.  In my world view, the Biblical literature is  the place to which I go to find the framework of reality as I understand it, to locate meaning in the middle of things beyond understanding.  This morning as I sat in the car at the lot at Cedarcrest, my mind went to a passage written by a fellow named Paul, who had by that time gone through some terrible struggles.  It reads this way:

“But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. 8We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9persecuted, but not forsaken; struck down, but not destroyed; 10always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. 11For while we live, we are always being given up to death for Jesus’ sake, so that the life of Jesus may be made visible in our mortal flesh. 12So death is at work in us, but life in you.” [2 Corinthians 4:7-12 NRSV]

Quoting Scriptures is not intended to suggest that these posts are only for those who share my theology or any theology for that matter.  I am simply reflecting the sources to which I go for strength.  When hopes and expectations get crushed, it is easy to feel hopeless.  It helps to hear from others who have been there, like Paul, a way to perceive reality that allows survival. It is the reality to which Paul refers that provides the ground on which this roller coaster we are riding rests.

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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