June 7, 2010

Zandra’s Tears — Freda’s Food

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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As Bath Aide Zandra was leaving this morning, I caught out of the corner of my eye that she gave Daughter Lisa a lingering hug.  When she left, Lisa said that she was in tears.  Mary Ann has such a presence that it doesn’t take long for her have impact on people.  Zandra has come to help Mary Ann with her shower, wash her hair and get her dressed in the morning twice a week for maybe four years now.  Zandra was absolutely shocked when she came last Wednesday and saw how much Mary Ann had declined in just a week.

It is probably good that I didn’t see it.  I am beginning to feel as if my intentional denial is only a thin veneer.  I am not ready to allow the dull pain to break open.  I suspect that the illusion that I actually have anything much to say about when and where it breaks is only that, an illusion.  Enough of that!

Then there is Freda’s food.  Lisa was putting some clothes in the dryer.  As she walked out of the laundry room, I was standing in the doorway to the kitchen.  The door to the garage was between us.  As I was standing there, I was eating some of the Chicken Tetrazzini that Tamara had brought the other day.  I said to Lisa, “You know, I think we are running out of food.  I need to get to the store and pick up something.”  Lisa said that she certainly could cook something.

Seconds after Lisa finished that sentence, the door to the garage opened between us, and Lisa’s Husband, Denis, who had been sweeping out the garage, said, someone is here with food.  Neighbor Freda walked in with a bucket of beef and noodles, a package of salad, a loaf of bread and a freshly baked chocolate cake, announcing, “I brought supper.”  It’s all in the timing.

Today there was resolution to some minor annoyances that in our circumstances have seemed like adding insult to injury.

On Friday, I got the summons from the County Courthouse to jury duty.  Today, I picked up the note from the doctor excusing me from serving and got the form and the letter ready to put in the mail tomorrow.

There had been a leak at our gas meter we had reported a couple of weeks ago.  I called today to check on when they would come to repair it.  The truck came this afternoon, dug up a section of our new landscaping, and put in a new meter.

Yesterday, the waterfall stopped running.  Today, Brad came, pulled out the pump, covered with calcium deposits, took it with him, and later returned with a new one.  He had to talk long and hard to convince the vendor to honor the three year warranty.  Since Brad’s Dad has also been diagnosed with Parkinson’s, he has always been very good to us.  Actually, what he told the vendor was that he could not bring himself to charge this customer for a new pump and if he had to he would pay for it himself. Brad said he would come back in two or three weeks to add some stone to cover places where the liner is exposed.  He also will search from some bird friendly chemical to keep the calcium from building up again.

Today my mind has wandered a variety of places.  First of all, my gut keeps reminding me just how much I do not like what is happening to Mary Ann.  I won’t try to describe that feeling.  It is too big for words.

As I was driving out to run some errands a couple of thoughts wandered through.  One is how much of a relief it is not to be dealing with decisions on medications, how much to give and when, what to give and what to remove.  There was always the sense of responsibility for Mary Ann’s survival weighing on me, as if that depended on my making the right decisions.  I know I did not have that much power, but it did make a difference what we did and when.  There were good choices and bad choices to be made.  Those choices are no longer mine to make.  In that regard, it feels as if a heavy weight has been lifted from my shoulders, only to be replaced by a heavy pain in my gut.

Then, just for a moment, as I was driving from the Wild Bird place where I got some more peanuts in the shell for the birds favorite feeder to the Barnes and Noble to look for a reading light so that I could be in the bedroom with Mary Ann reading without having to turn on a light that might disturb here — just for a moment, I had a flash of being out running an errand by myself, without have Mary Ann at home to return to.  It was almost more than I could tolerate.  Have I mentioned how much I don’t like this???

On a more positive note, it continues to be a marvel how many people here and in other places are praying for us.  One of the images used by some of the New Testament writers, is that of myriads of people cheering from the stands.  The imagery comes from the sporting events of the time.  We feel as if there are many people cheering us on as we are in the home stretch, winded and in pain, buoyed by the good will of so many.

Mary Ann has seemed very comfortable today.  We were concerned about the possibility of sores starting, but there were only a couple of red spots.  Bath Aide Zandra confirmed that her skin looked very good.  Nurse Emily came by and confirmed that Mary Ann is still not in need of changing to the special bed and mattress.  She also said that Mary Ann is probably much more comfortable in her own bed than she would be in a hospital bed if one was brought in.  We can get one within a couple of hours if it is needed.

Hospice Chaplain Ed came over for a while.  Again, that is more just a chance for two pastors to chew the fat, as they say, than anything else.

Mary Ann did not eat anything today, but she did drink some water.  She has had her eyes closed almost all day.  One eye opened for a bit when the girls (our 5 and 7 year old Granddaughters) sat on my bed next to Mary Ann and read her some books.  Mary Ann said “okay,” when Nurse Emily told her she would be back tomorrow.  When we changed Mary Ann tonight, there was very little redness in a couple of places.

It felt good to see her comfortable today.  Somehow that helps make dull pain more bearable.

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

 

May 27, 2010

I Keep Waiting for Their Return

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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

 

May 26, 2010

Intense Hallucinations Take a Break

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Today was a respite from the hyperactive hallucinating with me tagging along hanging on to the gait belt.  For most of the last two days, Mary Ann has been sleeping or resting but certainly calm even when awake.  Her speech has improved even though she is saying very little.

Yesterday, she was almost completely unresponsive.  This morning she refused her shower.  Monday and this morning she seemed not to know her Bath Aide Zandra of whom she has come to be very fond. When I came in after the morning Spiritual Formation Group on the deck, she was sitting at the table with Volunteer Maureen trying to feed her some yogurt.  Mary Ann was crying.  I guess she had been since Zandra got her up.  I assumed she had had one of those sad dreams that sometimes come.  When I asked her about it, she said she couldn’t remember why she was crying.  She might have forgotten or she might not have wanted to tell me about it.  I think it was the former.

As the day has worn on, the short times she has been up have gone pretty well. She has seemed calm and lucid and connected.  I haven’t seen her that way in over a week.  It seems reasonable to conclude that the addition of a morning dose of Seroquel ten days ago made things worse rather than better.  I expect the hallucinations to begin firing up again, probably tonight, but I hope they will not be as intense as they were before we removed the morning dose of Seroquel. Whatever comes next in our relationship to a physician, I will be asking lots of questions about the Seroquel she is still taking, the night time dose.

The last two days have provided me with a little more rest.  Even if still tired, I feel better and seem to have regained the ability to experience moments of respite.  Last evening while Volunteer Patrice was at the house with Mary Ann, I went to my favorite local spot to enjoy that wonderful view and a spectacular sunset.  The sun was a huge ball with the light refracted enough so that it was possible to look at it as it passed behind a horizontal band of cloud, showing above and below the cloud before reaching the horizon.  As I was looking toward the sun the sky and clouds were glowing as if on fire.

Then I saw something I have seen in movies on rare occasions, but never in person.  I took the binoculars and pointed them in the direction of the sun, providing a view as if through a movie camera lense.  The air was filled with Cottonwood seeds, carried in those tufts of white fluff.  The sunlight caught them in a way that made them look just like the embers that fly up from a bonfire when the burning wood is stirred.  The air was full of those firey embers being blown gently across the scene provided by the binoculars.  It was sort of entrancing as I watched them floating through the air.

The weather allowed this morning’s Spiritual Formation Group to meet on the deck.  It was a beautiful morning in spite of predictions of storms.  The birds were loud and busy. The sky and clouds were in stark contrast of deep blue and bright white.  There was a breeze that cooled us periodically as we were warmed by the bright sun.  The conversation was thought provoking and satisfying as we caught sight of the power of community and the need to have reverence for others and the setting in which we live together.  As always, I am struck by the commonality that we have since we are all made of the same stuff, earth.  The first person in the Biblical account of creation is named Adam.  That name is the Hebrew word for earth, dirt, adamah. We call ourselves human, from the word humus, the dirt from which plants grow — fertile soil.  Whether one happens to have a spiritual view of reality or one without a spiritual dimension, the same is true.  We are made of the stuff of earth – all of us.  No one can claim to be better or more valuable than another and still speak the truth.  We may do things that when measured by others have greater or lesser value, but we are at the core, the same.  That seems to me to be the key in this hostile world to any path that might lead to real peace — no winners and losers, but full participants in our common humanity.   Such peace is only a dream in a broken world of imperfect people, but possibilities start with dreams.

Later this morning, I experienced a mini-retreat with fellow group member, former parishioner and friend Paul as we walked some property that reminded me a bit of my favorite place of Spiritual Formation, St. Francis of the Woods in Northern Oklahoma.  A friend of Paul graciously gave him permission to bring me out to this remarkable spot that provided an expansive and secluded field of wild flowers and native grasses completely surrounded by trees.  For me it was a bit of a step back in time to my childhood days of wonder over weeds and bugs and birds.

The deck and the area surrounding his friend’s house were filled with birdsongs.  There were wrens singing so loudly that it almost hurt my ears.  Other birds joined in.  Flowers in various stages of the growth cycle were to be found in bed after bed.  The trees were even dramatic in shape and texture as they reached into to one another, displaying varying shades of green. One large tree next to the deck had multiple gnarled trunks providing lots of play areas for the birds to entertain as they hopped from branch to branch.  There were art pieces, small and large, metal sculptures, everywhere I looked near the house.

Afterward, I was out of breath and hot and sweaty with boots wet from walking through the weeds but refreshed by the experience.  I am grateful to have felt good enough last evening and today to enjoy those experiences.

As I said, I am expecting the hallucinations to begin firing up today and tomorrow, based on past experience.  I am hoping that some of the contacts and calls will begin to bear fruit as we look for good medical care for Mary Ann for the rest of this journey.

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

 

May 25, 2010

Down, But Not Out

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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I felt pretty low this morning. She was up some during the night, but not as bad as some nights.   Mary Ann’s dementia was pretty strong.  Her words were still pretty much unintelligible. She insisted on getting up very early.  I was not sure if she would ever calm down.  She was hallucinating and grumpy.  I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.

She finally did become more subdued, putting her head on the table as she sat.  She ended up in bed and was only up for a small breakfast and a very small lunch.  At lunch I had to hold her head up to get any food in her mouth.  Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream.  Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup.  She then pretty much fainted and I took her back to bed.

She has had no supper either.  Once in the afternoon she did get up for a very short time.  She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed.  She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.

I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.

It is easy to feel very helpless in the face of things over which we have no control.  Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.

What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something.  Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results.  Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats.  I am still bone tired.  I don’t know what that means exactly, but it sounds as I feel.

As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control.  It may only be an illusion, but if it is, it is a helpful illusion.

At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital.  Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann.  The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.

The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much.  While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.

The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation.  She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.

The Hospice Social Worker reviewed the residential options and will do more checking on those.  She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia.  She mentioned one not far that a Social Worker friend had declared to be wonderful.  A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.

I also sent the fax to the Neurologist who declined to continue to treat the hallucinations.  I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long.  Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.

There was one especially interesting sidelight to the day.  Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia.  It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine.  The magazine just goes to enrollees in Northern Illinois (if I understand correctly).  When the request came, she was looking for Seniors who did Blogging and had an Illinois connection.  Both Mary Ann and I grew up in Northern Illinois (Aurora).  I responded, but heard no more.

Yesterday she emailed and today interviewed me on the phone.  She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation.  It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation.  Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way.  I have no way to judge the quality of the writing.  I just need to write to get this stuff out of my gut.

When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us.  All through the day I am thinking about what is happening in terms of how and what I might write about it.  I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits.  Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us.  I realize that sounds very self-serving and ego-centric.  It is.  I admit it — but it sure helps.

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

 

May 22, 2010

Perfect Storm Damages Resolve

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Can it get tougher?  Apparently so.  Those who read this regularly must be getting awfully tired of hearing about the list of problems Mary Ann is dealing with and my complaining about their impact on me.  I debated even about writing a post today. It was ugly and messy.  My reaction was noisy and complaining.  There was absolutely nothing entertaining about today’s perfect storm of problems converging at one time. There is no resolution in sight.

Each of the elements of this perfect storm by itself is enough for Mary Ann and me to deal with.  I will describe again the ones relevant to this meteorological marvel.

One element:  Mary Ann has had Parkinson’s Disease for more than 23 years.  The medication of choice for Parkinson’s is a form of L-dopa.  The brand name is Sinamet.  That is the only effective medication for providing mobility.  Without it, Mary Ann stiffens and becomes rigid from head to toe.  After years of taking Sinamet, a side effect is wavy involuntary movements of body, arms and legs (as seen when Michael J. Fox is in the public eye).  Those movements are called dyskinesias.  The result is legs twisting together, body shifting one way and another, arms moving this way and that.

Another element:  People with Parkinson’s Disease develop problems with the functioning of the Autonomic Nervous System [ANS), the part of the brain that runs a whole list of activities in our bodies, activities that happen without conscious intervention.  In a small percentage of those with Parkinson’s, the ANS’s ability to quickly constrict blood vessels when they stand up keeping their blood pressure high enough to make sure that the brain gets enough oxygen no longer remains consistently able to do so.  That means the person affected gets dizzy at best and loses consciousness at worst.  Mary Ann has won the unfortunate privilege of having a severe and erratic version of that problem.

Another element:  Again, only a moderate percentage of those with Parkinson’s Disease develop Parkinson’s Disease Dementia.  There seems not to be a clear and consistent assessment of the percent of folks who move on to the dementia. This form of dementia is a form of Dementia with Lewy Bodies.  While there is no good dementia, it is a particularly insidious form of dementia.  More than memory issues, it is about visual hallucinations, delusions of all sorts, and vivid dreams that cease to be differentiated from reality.  There are few available in the way of medications that control the symptoms.  Most that might do so ultimately make the symptoms worse.

Another element:  One of the problems that comes with Parkinson’s is bladder activity.  There is the need for many trips to the bathroom day and night.  Because of the movement problems that come with Parkinson’s, help is needed when using the bathroom or bedside commode.  Another of the problems that come with Parkinson’s is sleep issues, the ability to get to sleep, stay asleep, disturbing dreams that interrupt sleep.  Another problem is that those with dementia often hallucinate most at night.  The combination of those problems is that those with Parkinson’s and those who care for them often have sleepless nights.

Another element:  One of the central non-motor problems with those suffering from Parkinson’s is constipation, intestinal issues.  The ANS not only runs the smooth muscles around the arteries, but the smooth muscles that move food and waste through the alimentary canal.  Those muscles slow reducing the natural ability of the intestines and colon to move things along.  Miralax and Senna are the tools of choice needed for Mary Ann to keep her insides running.  The result is not always orderly when finally there is activity.

Now to the Perfect Storm.  We have had two sleepless nights in a row, hallucinating has gone wild, morning, noon and night.  Just as we headed into the bathroom, the dyskinetic movements kicked in with a vengeance.  Then came the horrifying last element of the perfect storm.  There was soft and nasty matter that ended up spread on her back side and legs from her waste (on shirt) to her ankles.  My job was to clean her while she was popping up (the dementia – no matter how many times or how loudly I asked her to stay seated), fainting again and again, legs twisting and crossing and rubbing against one another when sitting or standing (with me using all the strength I could muster against her leg muscles to keep them apart), again, while trying to clean her up. There was another bout later in the day — not as bad, but not too far from it.

The hallucinations are still continuing tonight.  She has been hallucinating all day.  A short time ago I had two trips into the bedroom trying to convince her that it is time to go to bed, not get up.  Four minutes after the second trip in, finally convincing her that it is dark out, time to be in bed, she got up trying to get ready to go to church.  Last night once I woke to her sitting on the side of the bed yelling “help” and when I sat next to her she said someone was going to rape her.  This morning she woke me as she was sitting on the side of the bed crying, describing her beating at the hands of a policewoman who kept pounding on her.  I am afraid that the images from all those Law and Order episodes are folding into her hallucinations. I have been in at least a dozen times in the last hour or so.

Even though we had difficult nights, the the last two nights, this morning I managed to sleep while she napped for a couple of hours.  The perfect storm came right after that nap.  I was completely exhausted physically and mentally after the major bathroom battle.  Everything hurts, muscles, gut and mind.

These events are hacking at my resolve, my commitment to see this through to the end here at the house.  I am disappointed in my own seeming inability to handle this, but more horrified at the thought of not keeping my commitment to caring for Mary Ann at home.  I don’t want her not to be here, so that resolve is not just for her sake.

I wrote a bit on my dilemma in an email to the online Lewy Body Dementia Spouses’ group (many of whom have had much more difficult situations than mine).  One response was simply this little poetic piece:

who knows who knows
what do you do
when you break your commitment
or it breaks you

For now, I am taking some small comfort that while what happened this morning took me far past my ability to cope, I still did it.  I had to.  I am still alive, in some more pain than I care to have, but alive.  …and, for that matter, so is Mary Ann, alive and clean — still hallucinating in a steady stream.  I doubt there will be much sleep in this house tonight.

One reminder to those who wonder that you don’t hear from me (a retired pastor) glowing words about my faith life making this task easier to endure. Nowhere does there come any promise that life will be easy, that we will feel less pain, experience less frustration, because of our trust in our Maker and the One who healed our relationship with that Maker and the One who inspires us with His Power.  My faith is not weakened by my human weakness.  Instead, the One who does the healing retains the power.  I am all the more grateful that the healed relationship does not depend on my strength, but His.  His strength, my weakness.  That is the heart of the message of the Cross.

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

 

May 19, 2010

She Slept Last Night

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I am not sure either of us would have survived another night of constant hallucinations.  She slept soundly last night.  This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household.  Mary Ann slept through my time in the Spiritual Formation Group that meets here.  I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives.  The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded.  She had to awaken Mary Ann to do the morning prep tasks.  While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine.  Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival.  Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting.  Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed.  The little piggies are devouring seed at a phenomenal rate.  That is my part of the deal.  Their part is to provide us with hours of entertainment.  Yes, my feeding them is self-serving — but they do get something out of the deal.  Today is another rainy day, bringing lots of bird activity.  Unfortunately, there is evidence that the raccoon(s) have returned.  Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back.  Rather than messing with trapping, I plan to bring the feeders they bother into the house each night.  They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis.  This option came as a referral by Hospice Social Worker Kristin.  These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems.  Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today.  We will begin with a Monday time the second week in June and just see what seems to be the most helpful.  She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon.  At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me.  After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table.  When there was interaction, there seemed to be minimal evidence of hallucinating.  She napped in bed for a time this afternoon.  She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down.  As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them.  The last increase many weeks ago produced a couple of bad days followed by some good days.  I would like for this increase now to produce some good days.  I am not even willing to hope that it will be so.  That sort of hope just sets me up for disappointment.  It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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

 

May 19, 2010

2nd Tough Night and Morning

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Last night was a little more constant than the night before in the rampant hallucinations/delusions/dreams mixed with reality.  This morning was at least as tough as yesterday morning.  She speaks clearly and with a strong voice.  She can get up and walk on her own, and I just hang on to the gait belt, helpless to change her behavior as we move this way and that.

She got up very early, when i could no longer coerce her into staying in bed.  After breakfast and pills, she was up and running for an hour or so.  Then she went into the bedroom, with me tagging along, and decided to get back into bed.  I, of course, was completely wasted from two nights in a row.

We had an appointment with a quality control worker from Wichita to evaluate the care we are getting from the state agency through the local County office.  For us that meant evaluating our Case Worker and Bath Aide.  She arrived a short time after Mary Ann had gone back to bed.

When the Evaluator arrived, we went into the bedroom to see if Mary Ann was awake enough to participate.  Mary Ann said she would participate but was clearly unable to do so.  I explained that we had been up two nights in a row resulting in her needing the sleep.  The Evaluator asked if she was sick.  Admittedly, I was baffled by the question since she was here to Evaluate the people helping us because Mary Ann is debilitated.  I told her it was the Parkinson’s and the Dementia that were at issue.

The Evaluator got the information needed for the form.  She was pleasant and understanding, even though her initial question had seemed pretty silly to me.  In the course of the appointment, she asked if I would be getting any rest.  I said that while I usually don’t rest during the day, I would have to do so if there was one more night anything like the last two.

After she left, I did some chores.  I continued to think about the option of my getting some rest during the day.  I chose not to do the variety of things that I would normally do with the break provided by her sleeping.  I went in and lay down to allow myself the option of getting some rest while Mary Ann was sleeping.  I actually slept for a couple of hours.

The negative of sleeping when Mary Ann is sleeping is that I lose time that is free for me to spend on things of interest to me, helping me keep my sanity and get some perspective on the daily struggles.  It is hard when all my waking time is taken by the caregiving tasks themselves.  This has, however, come to be a matter of survival.  If there is any hope that I can keep doing this while the dementia is in full swing, I have to get some sleep.  I am hoping that I can manage to continue to use at least some of Mary Ann’s rest time as my rest time as well.  I have to relent on my intention to keep nights for sleeping and days for waking.  I have tried not to reverse those two.  I no longer seem to have a choice on that matter.

At least once before, I had decided that it was time to look at facilities that might be acceptable for Mary Ann’s full time care.  I am again at the point of considering at least getting enough information to be able to know where to turn if things get too much harder here.

Hospice Nurse Emily came for her weekly visit this afternoon.  Mary Ann had just gotten up from her nap (as had I).  I tried to feed Mary Ann some lunch, but she just couldn’t handle even the chips and Pepsi.  She could barely suck on the straw enough to get the Pepsi into her mouth.  She only managed a very few chips when I was able to get them into her mouth far enough for her auto pilot to kick in and the chewing start.

Mary Ann’s Vitals were good.  Her blood pressure was 124/74.  That is about as good a set of numbers as a person could have — of any age.  Needless to say, next time those numbers could be half again as high or a third lower (as in the last two times it was taken).  Emily agreed to call about the progress on the possibility of having some paid help through Hospice so that I could count on a certain time for R&R each week. Emily did make that call, and one of the Aides is coming tomorrow to talk about the possibility.

Mary Ann was up for a while, but subdued, mostly with her head down on the table.  Eventually, she headed in to take a nap.  She was not interested in supper.  When Volunteer Barb arrived to spend time with her this evening, I went to check on Mary Ann to see if she needed anything before I headed out for a while.  She wanted to change into her pajamas and stay in bed.

After I returned and Barb left I checked again on Mary Ann.  This time she did want supper.  I got her a left over pulled pork sandwich and chips.  She ate pretty well and then went back to bed.  I have no reason to think that tonight will be any different from the last two nights, but I can hope.

I did phone the Neurologist’s office and leave a message reporting on Mary Ann’s behavior since we are trying to decide if the addition (three mornings ago) of the morning half tablet of Seroquel is helping more than it is hurting.  At this point, I am not sure what I think about that.  It does seem as if the consistent level of the hallucinations the last two nights suggests the medicine is having a negative effect.  Tonight may confirm that, or just sustain the confusion about what the medicine is or is not doing.

In the time away this evening, I read another section in the book on St. Patrick’s Breastplate, by Marilyn McEntyre, the verse that says, “Christ to comfort and restore me.”  There is a poem included in that section, a poem that is fitting for those with or without a religious affiliation.  The poem was triggered by seeing an acre of valuable, arable land sink into the river.  It is “The Slip” by Wendell Barry:

The maker moves – in the unmade, stirring the water until – it clouds, dark beneath the surface, – stirring and darkening the soul until pain – perceives new possibility.  There is nothing – to do but learn and wait, return to work – on what remains.  Seed will sprout in the scar. – Though death is in the healing, it will heal.

This is what she says in her commentary following the poem: “Three truths emerge conspicuously from this little passage that offer a durable way of understanding comfort and restoration: (1) there is nothing to do but learn, wait and return to work on what remains, (2) seed will sprout in the scar, and (3) healing and death are not always mutually exclusive.”

At this point in our journey, I am earnestly searching for the sprouts that are emerging in the scars left by the Parkinson’s and Parkinson’s Dementia.  Some are easily apparent, others still in hiding.

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

 

May 16, 2010

Happy Birthday Mary Ann!

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

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

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

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

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

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

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

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

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

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

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

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

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

 

May 13, 2010

Rollercoaster Ride is Stuck at Bottom of Dip

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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There seems to be no end in sight to the constant hallucinating.  It continued last night until about 3:30am or so, and fired up again some time in the 6am to 7am range.  When she is awake, she demands constant attention since the her mind is driving her this way and that.  She is anxious to tell Daughter Lisa about the girls bringing a wagon from the downstairs to help her when she fell.  Mary Ann even described the worried look on Ashlyn’s face.  They are still at their home ten hours away in Louisville, Kentucky.

As usual, gratefully, she did lay her head on the table and settle there after getting dressed, breakfast and pills — hallucinating all the while.  The position she was in looked so uncomfortable.  After a time she decided that she did want to go in and lie down.

During her rest time, I finished moving all the firniture out of the way for today’s carpet cleaning.  I also managed to get hold of the Neurologist’s office.  The call was a little frustrating since the Nurse saw that we had not followed one of the Doctor’s suggestions in the chart from our last visit.  She was not aware that in that visit, the Doctor indicated that the suggestion to get a Psychiatric Evaluation of Mary Ann, was only an option if we were not satisfied with Dr. Pahwa’s choice of medications.  Since I am very aware that Dr. Pahwa is one of the best Parkinson’s Specialists around, I opted not to try to find someone less knowledgable in the area to suggest other drugs.  The other meds for hallucinations are more dangerous and less effective for the kind of dementia Mary Ann has.  Dr. Pahwa confirmed that he was only making the suggestion to provide a sort of second opinion.

The Nurse seemed quite frustrated that I had not done what the chart indicated had been one of the suggestion for us.  The chart listed the suggestions, but not the result of our conversation at the appointment.  She did agree to talk to the Neurologist.  Since we were away from the house on account of the carpet cleaning, I missed the return call.  Somehow I also missed the call on my cell phone.

I got Mary Ann up to get in the car and head out when the carpet cleaner came.  We met former parishioner Jay for lunch at McFarland’s Restaurant, where Mary Ann feels especially secure — and the food is good.  There are lots of folks our age and older who frequent the Restaurant.

We had a great conversation.  Mary Ann was really struggling to stay alert and functional.  Even with my help she wasn’t able to eat very much.  We sure seem to have lost a lot of ground.  It continues to appear that it is not a temporary decline, but a new location on the ride.

After lunch, we tried to go home since Mary Ann was so tired.  The carpet was still too wet for us to go into the house.  We went over to the church from which I retired to use the bathroom, since I thought it would be quiet enough that I could take her into the women’s rest room without fear of interruption.

Then I broke down and took her for ice cream to Baskin & Robbins.  It was uncomfortable, but I will get over that.  The ice cream was good.

The next stop did not go well.  I drove to the grocery store.  We went in and gathered a number of items.  When we were about two thirds of the way done with our list, Mary Ann said she had to go to the bathroom for serious business.  They have no family bathrooms, but very active Men’s and Women’s rooms.  Since it was major business, I could not just ask someone to take her in.

It would have taken too long to try to check out with what we had before leaving to go home and use our well-equpped bathroom.  I took the cart to the Service Desk, told someone there that I would be back for it, and we high-tailed it home.  Things went fine there, but afterward, Mary Ann had to lie down and nap.  There was no way I could get her back to the store.  With the potential for bathroom needs and a store because of construction almost fifteen minutes away, I could not leave her there while I drove back, got the rest of our items, checked out and drove home.

In our world, nothing is easy.  Volunteer Coordinator Mary came to our rescue.  She has helped with groceries before and offered to help whenever she could.  I called her and asked her for help.  She immediately offered to pick up the groceries, stopping by the house to get the coupons and the rest of the list.  She quickly called back to offer to stay with Mary Ann while I went back and finished shopping if that would work better for me.  That is the option I chose.  It turned what had felt very frustrating and distressing into a few moments away to in a relaxed way get the task completed. At the store they had been thoughtful enough to put in a cooler the items in the cart that needed to be refrigerated.

When I returned, I thought Mary Ann would still be sleeping, and just need to be changed for bed to complete the night.  She wanted to get up for a while.  She needed something to eat.  All through the time she she was up and then eating she was lacing her reality into the reality visible to me.  Since going to bed, she has been hallucinating some.  There is not clear evidence yet as to whether this will be a night of sleep or of multiple interruptions by the hallucination/delusions and dreams mixed with reality.

One thing is certain.  I need to get to bed soon so that I at lease have a chance of getting some sleep.

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

 

May 9, 2010

Mary Ann Sleeps — Oriole Entertains

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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The hallucinations/delusions/dreams mixed with reality finally calmed enough by about 3am this morning for her to get to sleep.  The good news is that she stayed asleep long enough so that I could get caught up.  I got up a little before 10am.  She slept on until almost noon.

While she slept this morning, I filled a couple of feeders and then sat inside watching the activity outside on the deck, at the bird feeders and in the waterfall area.  The experience reminded me of pictures of folks going through an aquarium that has an underwater tunnel allowing them to watch the fish from inside their environment.  I sat in my little box (made of ticky-tacky??) as an observer, while they were foraging out in the open.

It was better than watching a huge high definition television screen.  There was a new character who joined the cast this morning.  It took me a few minutes to be sure what that flash of color was.  It was a Baltimore Oriole in search of food.  I had hung a Hummingbird feeder, an Oriole feeder and I had put out a dish of grape jelly, with little hope of actually enticing an Oriole to come by and spend some time.

The Oriole seemed a little confused.  He fluttered back and forth toward the glass of the sun room.  He moved to one of bushes next to a side window in the dining room and flew at that for a little.  Then he fluttered over to the hummingbird feeder and hung pretty much upside down, apparently managing to get some of the sugar water.

Then he moved over to the rail just below the Oriole feeder and not far from the dish of jelly.  Surprisingly, he just did not manage to spot the jelly, just two feet from where he was standing.  He fluttered up to the Oriole feeder and did not drink any of the orange sugar water there, but found the little pockets of jelly around the edge of the feeder.  By the way, I am using the word “flutter” very intentionally.  It was not just flying he was doing, it was what looked like very haphazard fluttering of his wings, allowing him to fly in place while trying to figure out where and how to land.

After Mary Ann finally got up, she ate a normal breakfast (she had not eaten supper last evening).  She was very subdued — almost completely non-verbal.  After eating, she agreed to head out in the car to do a few things.

Of course the first stop was PT’s for a cup of coffee, a single origin Ethiopian this time.  Then we went to a grocery that has a large seasonal garden center set up on their parking lot.  There we found a favorite hanging plant with small deep blue blossoms (sorry, no tag on the plant with its name).  Rather than hanging the plant, I put it right outside the lower window next to the sliding glass door to the deck.  That is the spot the Robin used for staging his attacks on his reflection in that glass panel.  The two spots on the deck on either side of the sliding glass door have provided the bonus of serving as perfect display areas for enjoying flowering plants from inside and outside.

After getting the plant (for Mother’s Day), we went to the farm produce store north of town to get asparagus.  We usually get three or four pounds each time we go since the season is fairly short.  The only other item they had that was from their own fields was Rhubarb.  I couldn’t resist it.  Mary Ann’s Rhubarb pie is so good that given the choice between a piece of that pie and a Turtle Sundae from G’s, I would eat the pie.  Those of you who know me well understand just how good that pie must be. The problem with getting the Rhubarb is that there is a long way between a handful of Rhubarb stalks and a piece of that pie.  Whether that long way will be traversed any time soon remains to be seen.

By the time we were back in town, Mary Ann was ready to have lunch.  I had only had a banana for breakfast, so I was anxious to eat.  We went to her favorite, Bobo’s, for a cheeseburger and fries.  I had the more healthful fish sandwich, deep fried and slathered with tartar sauce. Mary Ann was able to handle the burger and fries with little help.

After lunch I stopped at the Wild Bird store to pick up a couple of things and get some lessons on Oriole and Hummingbird feeding.  The message was, throw out the old sugar water and make new.  That is what I did when we got home.

Mary Ann had started dozing in the car, so as soon as we got home, I got her in bed to nap.

While she was sleeping and after I finished redoing the feeders, I sat and watched the big screen nature channel provided by the sun room glass.  One thing that I had noted when doing the feeders was that something had been at the grape jelly.  After a time of watching, the Oriole returned and headed directly for the jelly.  I hope he brings friends.

Mary Ann has slept straight through supper (I tried getting her up, but it didn’t work).  At about 9pm I got her changed into her pajamas and and the nighttime pills taken.  She still did not want to eat.  She finally stirred a little about fifteen minutes ago (about 10:40pm).  I sat her up and asked if she wanted something to eat.  She chose a single serving container of applesauce.  It turned out to be a bit of a new experience.  As I put the second spoonful in her mouth, she seemed to resist.  I went a few feet to get a nearby napkin.  When I turned back around, she had fainted and was completely out, gratefully having fallen to the side, still on the bed.

I got her back up into a sitting position after she came around and continued to feed her the applesauce.  She fainted again.  This time I was sitting next to her on the downhill side, so I was able to hold her up.  After she came around again, I resumed feeding her the applesauce.  With only a spoonful left she went out again.  This time I got her down to the pillow, moved her around into a comfortable position, where she is at the moment.

I am concerned that the daytime sleeping a third day in a row is fueling a switch between day and night for her, sleeping in the daytime and agitated at night with hallucinations, delusions and dreams confused with reality.  I am not sure what to do about it, since when she sleeps during the day, it is not just a light sleep from which she can be kept awake by urging activity.  She just shuts off.  She can’t stay awake.  The converse is also true.  When she is awake at night, she just can’t make herself sleep and not dream or hallucinate or have delusional thoughts.

I am very grateful for the pleasure and the calming that comes with sitting and watching the activity outside those panels of glass in the sunroom.  It does not seem to get boring since there is always the hope of some new cast member joining the regulars, the Mallards, Mourning Doves, Grackles, Robins, Blue Jays, Cardinals, House Sparrows, House Finches, Cowbirds and Fox Squirrels.  The Possum only comes at night, so I have not enjoyed watching him, just dumping the Possum pellets out of the ground feeder in the morning.

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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