February 25, 2010

Fax to Neurologist

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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It is done.  I sent two pages of recent events and current symptoms to the Neurologist in the Parkinson’s Clinic at the University of Kansas Medical Center in Kansas City.  Dr. Pahwa is one of the best in the nation, especially in the area of the Parkinson’s meds.  I am not sure to what extent he specializes in the dementia that is unique to Parkinson’s, but he certainly has a large enough patient base to have lots of experience on which to draw.

I think anyone who has complex medical problems ought to consider the approach of putting the information in writing and the questions in writing.  It seems logical to me that getting it to the doctor in advance of the appointment, even if he/she only sees it a few minutes before entering the examination room on the day of the appointment, will help create a better communication and exchange of information.

My impression is that the doctor focuses full attention on a particular patient by reading the chart carefully to reclaim the recent medical history.  Maybe it is a little like cramming for a test.  No doctor can keep a full and current awareness of every patients’ symptoms and their history of treatment.  Reading the chart fills the doctor’s mind at that moment with whatever is immediately available to him/her.

The fax contains recent history that I might not have remembered in detail in the heat of the moment in the exam room.  The written material gives the doctor a window into Mary Ann’s situation beyond what he will see in the ten minutes we are with him.  She may be lucid at that moment (the online LBD Spouses group calls that showtime).  He will conclude that what he sees is how she is.  Dr. Pahwa listens well and asks good questions, but he can’t help but be influenced most powerfully by what he sees in that room.  The fax gives him a history of all that I have seen in the past few weeks as well as what he is seeing.

I included in the material faxed to the Neurologist a third page, a full and current list of all the medicines that Mary Ann is taking, dosages, time of day the pills are taken.  Especially when there are a couple of specialists (Cardiologist and Neurologist) and a Primary Care Physician doing prescribing, it is necessary to have absolutely accurate information available to each one that includes all the meds.

Mary Ann has a regularly scheduled appointment with Dr. Pahwa this Monday afternoon.  I am going into the appointment willing to accept the possibility that this is the best we will get and no changes in medication are likely to help.  I am hopeful that there are some changes that can be made with the possible result of a better quality of life.  I am also fully aware that the risk is high that any change in meds might make things worse, causing a further decline, a potentially irreversible decline.  Mary Ann always goes in with the hope that she will be able to take fewer pills or find the magic pill that will make everything okay again.

Last night was not a good one.  Mary Ann was up a number of times, ready to get up for the day beginning around 3:45am.  She got up at 6:30am, when I got up to prepare for the Spiritual Formation Group that meets here at the house.  It is always distressing to me when she is up at that time, since I have a short time to get things ready for the group and no time to spend helping Mary Ann.  Before this decline, she almost always remained asleep during my prep time and part or all of the time until Bath Aide Zandra arrived.

She was in that intense mode that his hard for me to deal with, lucid, but on the edge of the dementia.  Gratefully, Volunteer Maureen arrived at 7:30am, just as I finished giving Mary Ann her pills and feeding her the daily yogurt (need those live cultures).  I was able to get to the group meeting downstairs.

It was a busy Wednesday.  Zandra came to do Mary Ann’s shower and hair.  She said Mary Ann was doing a lot of leaning over, seeming to be tired — understandably since the night was a very restless one.

Kristie came to do the monthly house cleaning. Since Mary Ann had gotten up so early that she ate lunch at 10:30am.  Volunteer Rebecca came from 11:30am to 2pm.  I was able to get away for a while.

I returned with Baskin & Robbins ice cream treats, as promised.  Mary Ann, surprisingly, declined hers and instead, asked to have supper.  She ate supper (the other half of the sandwich she had for lunch) at 2:30pm.

Not long after eating, she lay down for a nap.  She had been sitting with her head in her lap for a while.  Later in the afternoon, she got up and ate the ice cream treat.  The hallucinations began firing up as the afternoon wore on.

She got up again and had a little to eat, some pear sauce.  That is like applesauce, but made with pears.  Maureen had brought that, along with a large jar of frozen chili for future use, cinnamon rolls, and a dozen or so cookies.

Mary Ann headed to bed around 7:15pm.  I fully expect the vivid dreams and hallucinations to dominate the night, since that would fit the pattern of the last few weeks.

I guess I was right.  She just called my name.  When I went in, she was sitting on the side of the bed.  I knelt down in front of her and asked what she was seeing.  She was distressed that the people were beating on me.  She had her eyes closed and was continuing to see that happening.  She started crying for a bit.  I kept saying that I was all right and no one was hurting me, but she couldn’t open her eyes and let go of the hallucination.  Finally she calmed and was willing to lie down.  It is only 10:20pm, and it has already reached this level of intensity — does not bode well for either of us getting a lot of sleep tonight.

On the positive side, there were two very helpful times for my personal/spiritual health.  In the Spiritual Formation Group this morning, we each picked a favorite Psalm.  We applied three question to the Psalms: what is particularly meaningful to us in the Psalm, how can something of its message be incorporated to the ordinary stuff of our days, and is there a present day metaphor that might be used to communicate the message of the Psalm in contemporary terms.  The discussion that followed was very stimulating and thought provoking and meaningful.

The time away this afternoon was spent at a coffee shop (not PT’s but serves PT’s coffee) for lunch and some reading.  I know and enjoy the young family who own the shop.  After a while a former parishioner happened by.  Donny is a very pleasant fellow. He and his family are also folks I cherish.

After a conversation about a variety of things. Donny asked what I was reading.  As I described the book, it became clear that he also is intrigued by scientific inquiry and its relationship with faith.  I think he was a little surprised at my interest in Quantum Physics and things like String Theory.  I am not so much conversant in either subject as I am intrigued by them and fascinated by their potential implications for people of faith and theological conversation.  It was a very enjoyable mental respite from the daily struggles at home.

It is time to head back to the bedroom and see if my presence and familiar voice might help calm some of the distress the dreams/hallucinations/delusions produce.

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 23, 2010

Awake, Lucid and Fainting

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Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey together.

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 21, 2010

Chocolate Boost and Ice Cream?

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Maybe that will be the formula, chocolate Boost and vanilla ice cream blended together.  We now have both in the house — just this afternoon — haven’t tried it yet.  She let me feed her the yogurt at breakfast, so she had that and some juice.  After a long nap, we headed out to Perkin’s and ordered the usual, for her three buttermilk pancakes and a half order of bacon.

The last time we were at Perkin’s, I seem to remember her letting me put the bites of pancake into her mouth.  This time she refused.  I suspect that the number of small pieces that made it to her mouth could be counted on one hand.  Finally, she let me at least hold the bacon up to her mouth so that she could eat most of the two pieces she was served.

We went to the grocery after leaving Perkins.  I bought lots of ice cream (bad for me, good for her) so that no matter what she did not eat, there would always be that choice.  I had posted a request in the online Caregiver Spouses group for a good tasting supplement to use for Mary Ann, one their Loved Ones had enjoyed.  Two of the three responses mentioned Boost.  We had tried Ensure a few years ago and at least at that time, it tasted very chalky to us.  Mary Ann was not interested in that option.

Even though we had eaten only an hour or so before, I asked if I could get her some Sesame Chicken from the Chinese food counter at the grocery.  I just wanted to get something, anything, into her stomach.  She decided that she did want the Chinese food. At first, she would not let me help her with the food.  Finally she did let me help and she got a reasonable amount down.  Later when it was time to go to bed, she wanted a single serving Tapioca pudding, even though I offered ice cream.  That seemed a little bizarre.

As to how last night and today fit into the sleep versus hallucination days and nights, it was almost constant hallucinations.  Last night, she was up very many times early in the night with all sorts of the usual hallucinations.  It was not a good night at all.

She got up early, as usual after a bad night.  At one point during that early time, she just began talking as if we were in the middle of a conversation, saying that I could begin calculating the rent.  On pursuing what she was talking about, she said, “well we know where this is going.”  I assumed she was talking about some option for full time residential care for her.  No, she was referring to the rent for a place for her, since I was moving out.  (Don’t expect consistent logic in hallucination/delusion thinking.)

I recognize that these are hallucinations/dreams/delusions and come from random thoughts firing.  What I am concerned about is how sad and scary it must be for her to have moments when she is convinced that she is being abandoned.  Oddly, in the last weeks, since that one especially powerful Sunday morning experience at the lake, I have been consistently more thoughtful and patient with her.  Maybe losing Grumpy Caregiver has unsettled her world — as in when the normally thoughtless husband suddenly brings flowers home for no obvious reason.

As usual, she lay down shortly after morning juice, yogurt and pills for a nap. This time, I went into the bedroom to lie down also.  I decided that I had better use the time to get some of the sleep missed last night.  (Yes, I am listening!)

After a couple of hours, she was crying out loud as she was dreaming.  When I went over to talk with her, this time it had to do with a conference one of our kids and spouse were having working out their divorce.  I never found out which of the kids was in the dream. I got her up, dressed and hair washed — then to Perkin’s.  Both our kids and spouses have the sort of marriages any of us would want for our children.  There is nothing floating in the air to trigger Mary Ann’s fears.

Hallucinations were pretty constant when she was awake.  Tonight they are continuing.  She fell once while I was not in view of the monitor screen to get to her fast enough to keep it from happening.  She said she was up to brush her hair.  She wanted to put her jeans on.  Again, even though it was 9:30pm and dark, she thought it was the morning.  She wanted me to whisper when I talked to her so that the people would not hear.

I am hoping for two or three good nights, since she usually has much less problem with the hallucinations when she is sleeping well.  When the sound sleeping comes, it tends to steal from us the days as well.  When she is sleeping during the day, I am grateful to have relief from the intense and constant needs, and I am also very grateful to have her here with me in the house, but there is a sense of being trapped and alone.  Since I thrive on solitude, it is not a major issue, just a sometimes uncomfortable awareness.

In March, it will be twenty-three years since her diagnosis with Parkinson’s.  The Parkinson’s has been joined by the major heart blockages with a hospital stay that unraveled my ability to cope, the life-threatening pneumonia on a trip to Tucson with phone calls to the kids to come since she might not survive, the stroke that came a couple of months after that, now the Parkinson’s Dementia with Lewy Bodies.

This has not been an easy journey for Mary Ann especially but also the kids and me.  I am grateful now to have only the challenge of doing a good job of supporting Mary Ann as she deals with all of this, rather than at the same time having the challenge of serving a parish responsibly as Senior Pastor.  With that said, the journey now seems at some level to be still more difficult than much of what has gone before.  What’s more is that what we are experiencing now seems to be just the beginning of much more difficult times — at least judging from what others have gone through with their spouses who are experiencing some form of Lewy Body Dementia.

Gratefully, whatever comes will come one day, one hour at a time. We need only the strength to deal with each moment as it comes.  That is the way it is for all of us whether we know it or not.

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 20, 2010

Please Let Me Help!!

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I have asked her three times with fairly long intervalsin between to let me help her in some way.  She chose the chicken salad for lunch, along with the usual Pepsi and Fritos.  She just could not negotiate the fork.  She was putting the handle in her mouth. When I offered to help she said that she needed to do it for herself.

I got from the fridge the other half of a sandwich she had eaten on Monday.  I microwaved it just to warm it a bit and soften the cheese.  I put that on her plate with the chips and chicken salad in hopes that she might use her hands to eat it since the fork wasn’t doing well.

It was probably fifteen minutes of her getting nothing into her mouth, even the Pepsi, (she had also refused to let me get that to her mouth so that she could get some through the straw) before I offered again.  She still refused.

Just before eating I weighed her.  She had gotten as high as 135 pounds a couple of years or so ago — then 125.  More recently she has been under 120.  The last time I weighed her here is was 117.  This time it was 113.  She needs to eat!!!

When I came back to start this post, she was beginning to get some of the sandwich eaten, using the fork to pick it up.  I just went back to check again, and the Sinamet must have kicked in since she is now getting some of the chicken salad to her mouth.  That is a very good thing.

While, of course, I love ice cream and will find any excuse to head to Baskin & Robbins to get some, I also do so to get as many calories as possible into Mary Ann.  While she may run out of patience trying to eat chicken salad and a deli meat sandwich, she will manage to get ice cream eaten, even if it demands letting me help.

She ended up eating about four bites of all the food on her plate.  She did let me feed her a raisin cookie I brought home from the coffee shop for her yesterday.

It is very difficult to watch Mary Ann try to eat on her own when things are not going well.  One reason she was having so much trouble this afternoon is that her eyes were shut for most of the time she was trying to eat.  She was in eyes slammed shut mode, along with the return of hallucinations.

Last night did turn out to be one that included a number of times up.  Shortly after going to bed she had another divorce dream.  When I came in to check on her, she was sort of surprised to see me.  Hopefully, the fact that I am with her 24/7, those dreams will begin to subside.  She is fine when she is not in hallucination mode.  In fact, last night, she did say it was a nightmare she had had.  At least she seemed very quickly to be aware that it was not real when I sat down next to her.

She got up early this morning given how often we had been up during the night (her usual pattern on those nights).  It was not long after breakfast that she needed to lie down again.  She slept until about 2pm.  That is when we began the lunch process that went so badly.

She sat for a while after lunch, some of the time in her head in her lap position. After a while, around 4:15pm, she just got up and headed into the bedroom (I caught up with her quickly and let her lead us to where she was going).  She wanted to change her jeans for pajama bottoms.

After that change, I offered her some vanilla ice cream from the freezer.  She let me help her with a good sized bowl  Shortly thereafter she went in to lie down and watch television.  She was very restless for a while, with lots of hallucinations, this time interspersed with moments of lucidity.

It is 9pm.  She has had her pills and has been fairly quiet for a while.  I would not presume to predict how the night will go.

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 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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
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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 9, 2010

Hallucinations Return – Blood Pressure Challenges

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , |
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Last night was another difficult one.   The times up were not as often as our worst nights.  The hallucinations did not include the hyperactivity that was present ten days or two weeks ago.  They were fairly constant and strong.  Each time during the night I needed to talk her into lying back down. 

She needed a snack shortly after going to bed since she had eaten so little at supper.  She wanted pizza at 4am or 5am (don’t remember which of the multiple early morning times).   She thought it was suppertime, even though it was dark. 

I took her blood pressure first thing this morning.  It was 220/120.  Needless to say I did not give her any Midodrine.  At 10:20am it was 140/90.  After a long nap I took her BP while standing.  It was 115/60.  About fifteen minutes later I took it again while she was sitting.  It was 170/95.

It seemed as if I had too much information to give over the phone when calling the Cardiologist’s office.  Here is what I wrote and dropped off at the Cardiologist’s office this afterno0n: 

Dr. Meyer and Angela Bachelor, ARNP

Blood pressures on 2/4/2010 are in her chart – Midodrine: 10mg morning, 5mg noon, 5mg supper.

No blood pressures taken on 2/5 – Midodrine 10mg morning, 5mg noon, 5mg supper.

2/6, 10mg Midodrine in morning – sitting blood pressure measurements:

220/115 at 8:17am

200/110 at 11:30am – no noon 5mg Midodrine dose given

160/85 at 1:15pm

185/100 at 2:25pm

200/100 at 4:25pm – no suppertime 5mg Midodrine dose given

200/105 at 8:00pm

2/7, sitting blood pressure measurements – no Midodrine given all day

200/105 at 2:00am

220/120 at 8:45am

165/105 at 1:45pm

Standing measurement – 130/80 at 3:10pm

165/95 at 5:00pm

2/8, sitting blood pressure measurements – no Midodrine given all day

220/120 at 8:00am

140/90 at 10:20am

Standing measurement – 116/60

170/95 at 2:35pm

Questions:

Is there something I should be doing that would be safe for me to do (some prn med) to help lower her BP when it is so high? If so how high should trigger its use?

Can Midodrine be used prn assuming four hour intervals up to three times a day, last dose at suppertime, starting with 5mg per dose, titrating to no more than 10mg? Would either fainting or BP measurement with both numbers below 100 be appropriate triggers for Midodrine if prn use is authorized?

Peter Tremain, 2/8/2010

That is the blood pressure issue.  Now comes the return of the hallucinations.  The problem has continued and intensified a bit during the day today.  There is a little black poodle who looks like the one we used to have that Mary Ann has been seeing and talking to today. 

Zandra, her Bath Aide, reported that she saw a little girl during shower and morning prep time.  Mary Ann mentioned seeing our Granddaughter Ashlyn a few times today.  Ashlyn lives in Kentucky.  She has been seeing dirty spots on the carpet or bedding, wet spots in many places.  There have been lots of little gold chains.  There were racccoon tracks on her transfer chair.  She jumped a couple of times when either I stepped on something or once a vase fell and broke, neither actually happening. 

I followed her a few times to get something or find something or pick up something — all things that were not there.  She tried to explain things to me on a few occasions and got lost in trying to finish whatever it was, throwing up her hands admitting that she was confused. 

Again today, eating was a struggle.  She let me help her at breakfast, and lunch, except for the ice cream.  At supper she let me help some, but ate more ice cream on her own.  She tried eating it without a spoon, then got a little into her mouth using thespoon, finally agreeing to just put it back in the freezer.  She would not let me help her eat it.   At lunch and supper, she kept using her hands to pick up and take things to her mouth, things that, again, were not there. 

I have been back to the bedroom a number of times now.  The Thursday people are here, even though it is Monday.  She had trouble again with the need to go home.  Then she said something about not being obligated to let the people stay over, although that was juxtaposed with the her wanting to go home.  When she asked what the plan was, what she should do next, I said that it is 11pm and it would be great as far as I am concerned if she would lie down and go to sleep.  She thought she could do that.  I have no illusions that it will happen any time soon.  We have just been up again dealing with the problem of the people she sees here in the house. 

While the intensity of her hallucinations does not have element of hyperactivity as they did a while back, I can see that hyperactivity just over the horizon. 

I need to start writing the note to fax to Dr. Pahwa, her Neurologist, who specializes in movement disorders such as Parkinson’s (a program and the University of Kansas Medical Center in Kansas City).  I need to lay out in the note just what has gone on from the weeks before the increase in Seroquel to now. 

As I have commented in these posts more than once before, changes in medication sometimes backfire.  If something is removed for a while, sometimes when it is reintroduced, it will not do what it did before.  There was a small study reported in the online Lewy Body Dementia Spouses group that showed folks reducing dosage on medications that were causing hallucinations, but in the case of Parkinson’s Disease Dementia, the hallucinations continued in spite of that reduction.  Sometimes meds start something that cannot be stopped.  Sometimes, of course, the disease has just progressed farther and there is nothing that can change that decline. 

While we may be nearing the end of our options for dealing with the progression of the symptoms of this disease, we will continue until all the current options are exhausted — and then we will look for more options after that. 

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 8, 2010

Blood Pressure Refuses to Budge

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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This is the person whose Autonomic Nervous System has not been able to maintain a consistent level of blood pressure for the last few years.  It has vacillated up and down and down and up again.  Now the pressure gauge in her body seems to be stuck on high.

After consistently high blood pressure readings yesterday (see last night’s post), this morning at 2am I decided to take her blood pressure.  We spent a couple of hours up most of the time between 1am and 3am.  At 2am it was 200/105.  I decided to take a reading this morning when she first got up so that I could decide whether or not to give her the morning dose of Midodrine.  The Midodine raises her blood pressure to keep her from fainting from the Orthostatic Hypotension — sudden drop in blood pressure when standing, resulting in fainting, what the doctors call syncope.

Her blood pressure reading at 8:45am was 220/120.  Needless to say, I chose not to give her this morning’s dose of Midodrine.  I will keep track of her blood pressure and phone the Cardiologist tomorrow if it is still stuck at such a high level.  Actually, I will call no matter what to report this long stretch of high BP and ask if there is something that would be safe for me to give her to lower it when it is this high.  I also need to try to take her BP when she is standing to see if it lowers then or remains high.  At the Cardiologist’s office last Thursday, her BP was consistently measuring higher than yesterday and today’s numbers here at home even when we stood her up and ARNP Angela measured it.

Last night was not an easy one at least for part of the night.  I went to bed very early for me.  By around midnight or a little later, she started getting up, disturbed by the people.  At one point she wanted to get up and out of bed for a while to get rid of the people in her head.  I was encouraged by the way she said that, realizing (or saying for my benefit) that they were in her head, not actually in the house.

I reacted differently from the past when I have gotten irritated and insistent with her.  I encouraged her and helped her lie down, reminding her that staying awake would make them worse instead of better.  Each time she lay down, I returned to my bed but stayed awake, listening intently to her.  Whenever I heard her mumbling or moving around, I asked if I could help.  In some cases I went over at talked with her a bit.  At one point when I was in bed, she asked what the man was doing in my bed, meaning me.  I reminded her who I was.  It was odd that she seemed to be talking to me but at the same time about me as if I was someone else.  I assume it is a version of the Capgras Delusion I have talked about in earlier posts — the perception that a person has been substituted for another (as in the body snatcher movies).

I stayed awake most of the time for about an hour and a half as we interacted off and on.  Then she settled and slept through until morning, other than the usual commode trips.

I got up earlier than usual this morning so that I could get ready for going to the 11am worship service.  When Mary Ann got up, she asked what we were doing today.  I helped her tune in to the fact that it was Sunday, and that I was planning for us to go to the 11am service, then out to eat at the Brick Oven, and watch the Super Bowl later in the day.

When eating the yogurt, drinking juice and taking pills, she was in eyes-tightly-shut mode.  I needed to feed her again this morning.  When I offered the usual options for cereal, instead of picking one, she said she was tired and wanted to lie down.  She was pretty unstable from the time she got out of bed.

I did make a point of weighing her to see if she is retaining fluid.  Her feet have been swollen the last couple of days, including this morning. Her weight was almost exactly the same as it had been the last time she weighed herself on that scale.  I will continue to monitor that as long as her feet remain swollen.

After she made a trip to the bathroom, when I asked her if she still wanted to lie down, she said her stomach hurt and, yes, she wanted to lie down.  She was concerned about lying down, knowing that I wanted to go to church.  Those words and actions, stomach hurting and wanting to lie down, usually asssociate with intestinal activity at some point. I knew that major intestinal activity would be far easier to deal with here at home than at church.  There would have been no way to manipulate her into going at that point, nor would it have made sense to try given those circumstances.  It is now well past the time church would have started and she is still sleeping.  I am sitting here at the computer with my suit pants on.  I guess it is time to change into stay at home clothes.

She slept for about four hours.  I should have gotten her up at some point to go to the bathroom.  Even though she had a night time disposable, it leaked. The bedding needed changing anyway.  The PJ’s and bedding are in the washer. I waited a little longer than I should have to give her a pill and get her up since I had ended up sitting down and reading, listening to the waterfall and birds in the back yard through the speaker made to bring outdoor sounds in.  Last night’s time up with Mary Ann caught up with me and I wanted to have some extra time just to rest.  She called for me soon after the time her med timer had gone off.

I took her blood pressure when she got up.  The reading was 165/105, not good but better than earlier in the day.  I cooked a bratwurst at her request.  Bratwurst and chips sounds like good Super Bowl Sunday food.  She handled the bite-sized slices of bratwurst on her own, as well as the dish of ice cream from the supply we bought at the store yesterday.

After lunch I asked her if she was willing to let me check her blood pressure while she was standing.  It was considerably lower, 130/80.  It was a little harder to hear clearly through the stethoscope since she was moving some.  It may have been a little higher than that, but certainly not lower.  When she has had problems with fainting, her BP has been very much lower than that when standing, and sometimes sitting.  Both numbers have been under a hundred.  The time she took the Tilt Table test at the hospital to verify that she had Orthostatic Hypotension, as soon as the table moved her from a lying position to 70% of a standing position, her BP dropped from a high reading, to 50/30.  A few minutes later she fainted.  I will keep checking her BP, but I would rather have a little fainting than allow it to stay as high as it has been the last few days.

A few minutes ago she showed me her glasses.  The ear piece on one side had come out of the hinge completely.  It will need to be reglued — hopefully possible.  We will take it in tomorrow.  I can only guess that spending so much time with her head down on the dining room table or the little table in front of her chair has resulted in loosening that ear piece.  I finally found an old pair of glasses she could use in the mean time.  It was almost comical in a sad sort of way that I found two old pairs that were not useable since she had fallen on them, in each case scratching one of the lenses so that it is completely useless. One of those falls took her to the Emergency Room with a giant hematoma on her forehead the size of her fist.

At suppertime Mary Ann’s blood pressure measured 165/95, again, too high, but not as high as this morning.  She struggled to eat supper and refused to allow me to help.  The last time I offered and she refused, I asked her why she wouldn’t let me help.  She was completely shut down, her face almost in the plate, getting nothing into her mouth.  Her answer was, “It is all I have left.”

She went to bed at about 7pm, watched the game from there, took her pills.  It was not long after that that she needed a snack — no surprise since she had eaten very little at supper.  She seems to be sleeping at the moment.  That, of course, can change at any 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.

 

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