The Caregiver Calling

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.

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

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

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

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

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

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

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

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

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

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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.

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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.

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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?

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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!

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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).

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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. 

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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.

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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. 

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