I explained that she wouldn’t be able to get the pills taken if she did not open her eyes.  “Will you open them now so you can take your pills?”  I said.  She replied, “I will when I am damn good and ready!”  Now that is the Mary Ann that Joy, Terry and Cherri remember.  I just laughed and told her that I liked her better when she was sleeping.  She laughed too.

We both had trouble getting to sleep last night.  I suspect a change in the weather and the barometer might have played into it.  I think it was some time after 1am that we finally went to sleep.  Mary Ann woke up very early.  There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well.  I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall.  When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused.  Her eyes were tightly shut.  She was talking as if to people.  Earlier she had seen Granddaughter Ashlyn.  This time she was asking Granddaughter Abigail to show her what she was drawing.  They, of course, live ten hours away in Kentucky.  She said a number of things to me that I just couldn’t connect with.  She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt.  Her eyes remained closed.  I put the pills and water and yogurt in front of her.  She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating.  During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers.  I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them.  After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed.  Zandra, her bath aide, came to give her a much needed shower and wash her hair.  I usually wash it at least once between Zandra’s Wednesday and Monday visits.  Mary Ann had been in bed almost the entire time.  When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed.  Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia.  That comment surprised me since I just did not expect that level of self-awareness.  I talk about our situation in front of Mary Ann, using language that matches what I understand to be so.  Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping.  That is one of the symptoms of Lewy Body Dementia.  As the disease progresses, often the daytime sleeping increases.  I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed.  After a while, one of her pill timers went off.  I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth.  In the past it has always worked to do the pills that way.  This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw.  I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down.  Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist.  She slept soundly through that entire time.  Trying to force her to get up when she is sleeping as she is now, is not much of an option.  She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago.  It is what it is.  We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement.  While the long term trajectory of this disease is not good at all, the short term is very unpredictable.  Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping.  She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head.  She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed.  If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for.  Those of you who have lost a spouse know the profound loneliness that comes.  With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up.  I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality.  She needed to have been awakened and taken to the bathroom.  Her pad was full to overflowing.  Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day.  Needless to say, the sheet and her jeans needed to be washed.  Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad.  At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream.  Her ability to walk has diminished dramatically.  She went to bed at about 8pm and has been restless off and on for a while.  It is now about 10:30pm, and for the moment she seems settled.  We will see how the night goes.

Addendum:  She just stirred and decided she wanted to get dressed.  She didn’t want to spend the day in her pajamas.  I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read.  Finally, she decided she could watch television in the bedroom without getting dressed.  I assured her I would be heading to bed soon.  This may be a long night.

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It is about 11:30am and Mary Ann is still sleeping.  She got up last evening long enough to eat some ice cream and apple crisp.  Then she took her pills, went back to bed and slept the entire night.  This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt.  Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating.  Her head is no longer hanging down on her chest.  Needless to say, those are encouraging signs. She is still unable able to eat without assistance.  I fed her last night and this morning, even putting her pills in her mouth.  She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications.  Most of her meds are intended to help her when she is up and about.  Most of them have a short half life.  They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7.  Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important.  She did take her night time meds, so there has been no interruption in them.  She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days.  That is a med that needs not to be stopped for long.  It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that.  I am also going to wake her up for the meds that come every two hours during the day.  My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity.  There has been some activity, this morning during the 7am trip to the commode.  Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity.  At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed.  With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears.  We are not yet back to that wonderful normal.  At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible.  My hope is that by Tuesday, a week from leaving the hospital, normal will have returned.  Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired.  When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly.  Since retirement, the rewiring is in progress.  By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments.  When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected.  Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer.  I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes.  (Yes, they allow Lutheran Pastors on their site.)  I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays
Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household.  Yesterday afternoon, John called and asked to come over for a time to talk.  John has been a support for very many years.  Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house.  Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over.  Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream.  Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly.  She has had two rounds of the meds that come at two hour intervals during the day.  To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down.  Often, when I give her the pill(s), she gets up from napping.  The last few days when I let her head back down, she just goes back to sleep.  It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm.  She ate a little more, then provided some unaided intestinal activity worthy celebration.  She went back to bed at about 5pm.  It is 9:30pm now.  She is still sleeping.  We will see how the night goes.

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