February 27, 2010

Neurologist’s Office Called

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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The fax is working!  It seems to be a great way to maximize the quality of the communication with the doctor.  Even though Mary Ann’s appt. is not until Monday, the Neurologist, Dr. Pahwa, has read the fax.  Through his Assistant, Stepanie, he contacted us by phone with a couple of things to think about before Monday. 

The first is that we think about whether or not we will want a referral to a Psychiatrist to deal with the decisions about what meds will serve best in dealing with the hallucinations.  I will, of course, ask for a referral to someone who knows Parkinson’s Disease Dementia and Lewy Body Dementia and what differentiates it from Alzheimer’s Dementia.  It needs to be someone with a large enough patient base of those with Parkinson’s Disease Dementia to be able to speak from experience as well as from book learn’n.

The second suggestion was to think about a referral to a Hospice program.   Medicare and many other insurer’s require a prognosis of six months or less.  I have not yet phoned a Hospice program to be sure what their requirements are, but the marketing materials often talk about a Palliative program that is a longer term intervention that provides a transition to the full Hospice care.  

Having been a Pastor for forty years, I have interacted with Hospice and many who have used it.  The reactions have been almost unanimously positive.  Many in the online Caregiver Spouses group have used Hospice.  Most in that group have had positive experiences. 

Whatever insurance and Medicare do or do not require, there is an expectation that the person being enrolled will not be resuscitated if they experience a cardiac arrest.  There is the rub.  I am not sure that Mary Ann and I are ready for that.  Four months ago, I doubt I would have seriously considered it.  Now, as much as she has declined in the past few months, I am willing at least to consider it.  I am not sure Mary Ann would be willing to accept a DNR order.   Actually, not long ago, our Daughter-in-Law had relayed a suggestion to us from a friend who had read this blog.  That suggestion was to check into hospice.  At that time I started thinking again about the DNR issue.  Mary Ann has declined considerably since that suggestion and its consideration. 

This Wednesday evening, our Daughter, Lisa, will arrive from Louisville, KY, to stay with her Mom for three days, while I have three days of respite at a Center for Spiritual Renewal in a beautiful rural location in north-central Oklahoma. 

In talking with Lisa this evening about the Hospice suggestion, she admitted that it was something she was intending to bring up during her visit.  She has been an Administrator at a very large CCRC, mult-layered complex for older adults.  She supervised the construction and staffing of a dementia building there.  She has also served on the Staff of a Hospice program in South Carolina, working with Volunteers. 

My hope is that our Son, Micah can come from Kansas City so that we can all talk about the matter of Hospice and the DNR that will be required if we choose to enroll MaryAnn.   Our Daughter, Lisa, and our Son, Micah have been a tremendous support.  I respect their ability to process the options with wisdom and rational thought laced with love and concern for both Mary Ann and me.  

Last night was another difficult one.  She was up for a number of times, not as many as some nights, but at least six or eight times.  There were dreams to be dealt with.  She needed to get up very early again, but this time a little single serving applesauce won us another hour or so of sleep. 

One of the times, around 6am, I heard her and awoke to see her standing by the bed.  I rushed over to see what she needed.  I asked if she needed to use the commode.  She seemed to say no, but then talked very fast with slurred words that were unintelligible to me.  She did that a second time.  I tried to manipulate her to sitting back down on the bed. 

It was not until the moment I reached around and got her moving into the sitting position that I realized that she had pulled down the pj’s and disposable and there was soft stool to be dealt with (sorry!).  There followed moving her quickly to the commode, changing clothes and rinsing out bedding so that it could be washed. 

At that moment I started thinking about how to title this post in a way that would change yesterday’s title “Difficult Day” to whatever comes after that that would indicate the next level of difficulty. 

Gratefully, the day improved some.  Actually, Mary Ann had a pretty good day.  I was glad for that since friend Jeanne had visited last week and Mary Ann slept almost entirely through the time she was here with Mary Ann.  Jeanne had a good part of the day able to interact with Mary Ann today. 

One odd moment came when I returned from some errands to find Jeanne very excited about the fact that our Daughter, Lisa was, according to Mary Ann, pregnant.  Mary Ann was convinced that I had told her Lisa was pregnant.  She, of course is not pregnant.  The fact that there simply are no boundaries between dreams and reality for Mary Ann creates some very interesting and sometimes bizarre results. 

Mary Ann is still in hallucination mode, but it has been a little more manageable today.  She did nap for a time this afternoon.  She ate very little supper and was not interested in my help.  She did not even eat the ice cream treat from Baskin & Robbins.  That actually is distressing since I have counted on at least being able to get some calories in by giving her ice cream.   Mary Ann’s recent weight loss seemed to Lisa  be especially relevant to the discussion Hospice Discussion.

Mary Ann is in bed now, and has not so far needed my intervention.  That has no bearing on how the rest of the night will go, but it is allowing me to write this post with fewer interruptions.   Here is hoping for a few hours of uninterrupted sleep tonight.

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 25, 2010

Fax to Neurologist

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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 22, 2010

Snowed in and Asleep

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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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

 

February 18, 2010

Hallucination/Delusion Elaborated

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It started with the comment, “last week was really terrible.”  I asked her if she meant the hallucinations. I listed a number of them that I remembered.  When I mentioned the one about my asking for a divorce, she elaborated.  She wanted to know if it was real.  Again, I assured her that divorce was not an option, and she would not get rid of me that easily.

When she elaborated, it was clear that this was a vivid and detailed experience for her that impacted her emotionally.  There were watering eyes and a quivering lower lip as it came out.

She said I had better call my sister Gayle.  Apparently, in her mind not only did she talk with Gayle about it, but Gayle and my Brother Dave and Sister-in-Law Velda were with her at the wedding when I married someone else. She remembered her name, “Lulu.”  At one point, we both laughed at the name.  I asked her to at least fine me someone with a different name than Lulu (no offense to any reader who may be named Lulu).

She also asked if our kids were divorced.  I asked which couple, she said both.  Somewhere in the jumble of hallucinations/delusions/dreams the kids had divorced.  That is when her eyes began to drip a bit.

Now I understand better why she asked me that one night if I shouldn’t be with my wife.  She must have been referring to the one I had married after divorcing her.

I am grateful that we  have had a couple of good days and nights so that there was enough clarity to be able to process what she experienced.

She slept well (as did I) last night again.  She seemed not to be hallucinating very much today.  There were still some of the threads and tiny gold chains she picks up, tries to get off her fingers and into the waste basket.  That is almost a constant presence.

Bath Aide Zandra came and did her shower and hair.  Zandra voiced concern for Mary Ann’s weight loss and her rapid decline.  She wondered about the increased size of the Exelon patch, whether or not meds were adjusted for her lower body weight.  It is generally true that older and more frail patients often need lower doses of medication due to changes in weight and how medicines are metabolized — more to add to the fax to the Neurologist.

After she was dressed and ready to start the day, I needed to help her eat at breakfast.  She did pretty well at lunch on her own.  She was in her chair much of the day, sitting up some, other times in the sitting with her head in her lap mode.

Volunteer Clarene was here for part of the afternoon, so I was able to do some errands and spend a little time walking the path at Cedarcrest.

I had talked with Mary Ann a number of times about going to the 5pm Ash Wednesday worship service.  The brisket and cheesy potato dinner following the service was a plus for her.  When I returned from the errands, I changed for church and we managed to get to to the service.

It was good to sit in church and look around at the people who had been such an important part of my life for so many years.  Mary Ann did reasonably well in the service, just struggled with sitting up in the pew.  I had to gently pull her into the sitting position and hold her there some of the time.

After the service, we headed down to the meal.  One of the Youth helped get our tray to the table.  When we sat down it was apparent that Mary Ann would not be able to handle the meal.  She was shut down — a term used when the Parkinson’s medication is not providing mobility.  It was a little hard to see her sitting there with her head down, immobile while the young family (really nice folks) at the table with us was unsure how to react to her.

She wanted to try to feed herself, but she couldn’t get her hands working.  She agreed to let me help her eat.  Gratefully, most folks know us well enough that they didn’t seem to give a second thought to my feeding Mary Ann.  She liked the food and ate quite a bit.  She accepted someone’s offer to bring her one of the apple desserts.  By that time another young couple, Don and Edie’s Son, Daughter-in-Law and, more importantly, their new little baby joined us. They know us well enough to be very matter of fact about our situation.

Yes, there was a stop on the way home to pick up some Baskin and Robbins.  Mary Ann is now in bed.  I have the uncomfortable feeling that she is having some trouble settling down.  We may be heading into a troublesome time.  There is no telling where the ride will take us tomorrow.  We are both grateful for a couple of good nights and 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 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 14, 2010

She Got Out of Bed

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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I went to bed very early last night, dreading what I assumed would be a sleepless night, probably including lots of hallucinations.  She had slept the entire day yesterday, the night before, most of the day before, most of the night before that, much of the day before that.

I knew what was coming.  It never came.  She slept the entire night and into the morning.  It settled in my mind that she was in a pattern of sleeping constantly.  As I showered, I concluded that it was simply not acceptable for her to be sleeping this much.  I would rewrite and update the fax to the Neurologist and ask if I could titrate back to a lower dose the Seroquel.  I concluded that whether or not this decline is due to over-medication of some sort, I would assume it was since we can do something about the medicine.  We can’t stop the disease process.

When I got dressed, Mary Ann needed to use the commode and agreed to get dressed.  While midstream in getting her dressed, she said she needed to go back to bed.  I tried to entice her with breakfast, washing her hair, a trip to the grocery later for items including Valentine candy.  It didn’t work.  She couldn’t stay up.  She lay back down.

I went on about the morning chores, more committed to working on changing the meds.  Then, to my complete surprise, I heard the shuffling of the bedding as she started trying to sit up.  She got up, I got her dressed, she came to the table and with my help took her pills, drank her juice (with Miralax mixed in) and ate her yogurt (again with help).

She moved to the living room and sat up in her chair without leaning forward into her lap as she had been doing that last days most of the little bit of time she was up.

After a while, we had a very enjoyable visit from friends (former parishioners), Don and Edie.  They brought flowers, a bottle of wine and Valentine’s Day card, as well as some very tasty homemade orange and pecan sticky buns.

They were able to stay a bit.  After fixing the flowers, Edie spent time talking with Mary Ann.  Don and I were talking in the kitchen, so I am not sure how responsive Mary Ann was, but the little I could hear seemed to suggest that Mary Ann was alert and engaged.

After they headed on their way, Mary Ann was willing to get in the car and head to the grocery.  We picked out cards for one another — a little strange to help Mary Ann pick out the card for me.  We got the usual Russell Stover box of candy.  Then  we spent quite a while getting groceries.  I decided to get some more packaged Uncle Ben’s rice dishes and a package of Suddenly Salad, since that had gone over so well with Mary Ann.  I realize that I need to come up with more variety for meals.  I am hoping to find some good packaged meals that provide the seasoning packets, increasing the likelihood that the result will be edible.

Mary Ann ate a good amount in the mid-afternoon.  She wound down and began leaning forward again after that.  She went in to lie down by shortly after 6pm.  She had a snack around 8:30pm along with the nighttime pills.

I am preparing myself mentally for being up with her tonight.  If she does sleep through it will be a nice surprise.  I do better if I am prepared for a difficult night.  I am less frustrated and resentful when it comes.

At the moment, I remain at least as hopelessly confused as I was last night when I wrote.  I was so convinced this morning what I should do next, and now Mary Ann’s day of alertness has pulled the plug on that plan.

At least my confusion resides in a rested mind, since I was able to sleep all night again last night.  I wonder what tonight will bring?

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

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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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.

 

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