“Are you going to pack up so that we can go?”  She thought we were still in the hospital.  After all the naps yesterday, the first part of the night was pretty tough.  She was up every few minutes sitting up, messing with the sheet.  She said she was making the bed.  It must have happened a dozen times with only minutes between each one.

When she thought she was in the hospital, I pointed to her quilt hanging behind the bed as I did once before.  This time she just said, “She keeps insisting,” which I understood to mean her “other self.”  She has not used that language before, but that sort of delusion is among the problems I hear about in the online Lewy Body Dementia Spouse Caregiver group.  That may not be what she meant, but it certainly sounded that way.

She settled down by about 1:00am.  Gratefully, she stayed asleep other than for a couple of trips to the bathroom for a number of hours.  This morning before 5am, she got up in need of something to eat.  I got her up and to the table for some juice and crackers.

Again this morning, she could not manage to negotiate eating the cracker without my feeding it to her.  She couldn’t manage the juice by herself either. She couldn’t seem to locate her mouth with the straw.  That has happened on occasion in the last weeks, even before the hospital stay.

Gratefully, after having the juice and crackers, she went back to bed and to sleep, and has been sleeping ever since– it is about 9:45am now.  She is moving around quite a bit in bed, but that sort of movement has been so from some years before the Parkinson’s was first diagnosed (22 years ago).  Vivid dreams with physical movements associated is one of the signs of future problems with this sort of dementia.  Of course, it is not a direct correlation, lest those of you who experience that think you are doomed to dementia.  It is somewhat predictive, but lots of other things come into play for problems with dementia to arise later in life — both genetic and environmental.  At least that is my understanding from what I have heard and read.  I am not an expert!!  Please don’t attach that burden to any observations I make.

I just glanced at the monitor again to see how Mary Ann is doing.  I did that automatic check that is natural to those of us who are Caregivers.  She was fairly still.  I waited and watched to see her body movement to verify that she is breathing.  Her current circumstances do not seem precipitous, so there is no special need to check.  It is just a normal response to her general condition.

Parenthetically, I didn’t trip the live trap soon enough this morning.  There is now another squirrel with a frightening tale to tell.

She has been sleeping now for many hours.  It is almost noon.   I am wondering who she will be when she awakens — the confused Mary Ann, or the one who is still mostly functional.  I am going to let her sleep as long as she can in hopes that she will “sleep it off” and return to the  version of normal we had before the hospital stay.

It is almost 4:30pm.  Mary Ann stirred for the first time today at about 4pm.  She got up to go to the bathroom.  We changed the disposable underwear, and I thought she would then get dressed.  Instead, she wanted to put her pajama bottoms back on and go back to bed.  That is where she is now. 

Once before she slept for almost two days after having had multiple sleepless nights which had resulted in much increased hallucinating.  She was significantly improved after that two day sleep.  I am, of course, hoping, planning, expecting that to be the case this time.  I am not so foolish as to count on it as a certainty.  She may be anywhere from completely lucid to virtually unable to function. 

As always, we will deal with what comes when it comes.  While I have in my heart of hearts ruled out residential care, this experience is causing me to reconsider at least thinking about the possibility.  I am still not actually considering it, but I am allowing a mental review of my position on the matter.   At the moment, all the options I am actually considering involve remaining here at home, adding whatever help or equipment is needed.

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It was a terrible sounding crash.  I had just gone into the kitchen to take my morning vitamins.  She had had breakfast and pills, was dressed, had been to the bathroom, was watching a television program she likes.  Normally, that is a safe time to walk out of the room for a moment.

Not this time!  It sounded horrible.  I ran out to see what happened.  She was not hurt.  That is the most important thing.  The table lamp was glass, gratefully, it had not shattered when it went flying.  Everything on the end table was spread out on the floor, the phone, a thick ceramic coaster was broken in half, a few other items that had been sitting on it were here and there.  The speaker on the stand next to the table had fallen to the floor.  None of it hurt her.

The end table itself was broken into pieces.  She wasn’t hurt.  That is the important thing.  It is just an end table.  Why did it upset me so??  People are more important than things.

It is odd that some things carry more symbolic significance than the thing or the event itself.  My Dad made the end table.  He was not much of a woodworker, but for at time after he retired he made a number of things out of some beautiful Black Walnut boards. There is a history that is embedded in that table.

My Dad grew up on a farm, but worked in an office his entire career.  Throughout my childhood, we went for rides looking for the perfect piece of property in the country to buy.  When I was eleven years old, he found it, twenty-six acres of woods and creek with a few tillable acres on the other side of the creek included.

One day when Mom and Dad were out there puttering, the weather changed.  They headed into a little seven by ten foot structure made of a few boards and some screens for staying out there on occasion.  When the storm ended, there were at least twenty full sized trees that had blown down, Oak, Ash and Black Walnut.  Three of them had fallen on three sides of that seven by ten, flimsy box they were in during the storm.

Those trees were cut into three-quarter inch thick boards and then dried at a local lumber yard.  The Oak and Ash trees became board and bat siding on the house they built to move into when Dad retired.  The Black Walnut boards provided paneling for the basement and end tables and book cases and lamps and candlesticks, a coffee table, and other items that reside in the homes of their children, the five of us, no longer children since now we range in age from 66 to 80 years old.

It is just an end table.  It’s demise is a reminder that nothing in the house is safe.  The fall itself is another reminder that we are out of control here.  I reacted with loud questions, “why didn’t you push the button?”  It sits right by her hand.  I come and help when that electronic doorbell sounds. She has been fainting numerous times a day in the last couple of weeks.  I have asked again and again and again that she push the button, that she let me help her when she is walking.

Seeing Mary Ann lying on the floor, seeing the broken table, a lamp that could have broken and cut her, carried with it the painful reminder of how close we are to not being able to sustain this here at the house.  I couldn’t stop it from happening.  She wasn’t hurt, the damage was not to her, just to material things.  I won’t tie her in the chair, but short of that, there is no way to stop her from putting herself and our fragile life here at risk multiple times a day.

A Volunteer came over shortly after this happened.  She has taken the table to friend who will look at it to determine if the pieces can be put back together in some form or another.  We will see.  Then I lunched with a friend who has finally had to move his wife to a nursing home because he could no longer do the very things we are trying to do here.  The challenges of sustaining that arrangement at the nursing home are also daunting.  It is difficult to find the boundary between being able to manage at home and needing to move to residential care.  It is analogous to the plight of the frog in the water on the stove, heating up until he boils, never realizing the danger until it is too late.

While I am physically able to care for Mary Ann here, I will do so.  The one dynamic that complicates that detemination to care for her here is the ability emotionally to do it.  I released some frustration by talking loudly about my feelings when I saw what happened.  Talking with a friend with similar circumstances helped.  Sitting for an hour in my beautiful spot on the hill, watching deer(among them twin fawns), listening to music, thinking, praying, all helped.  Thinking about and now writing this post helps.

As always, the hardest part of an event like this morning’s fall is handling the fact that I am not the sweet, thoughtful Caregiver who is always nurturing, helping without a word of complaint, the Caregiver I should be.  I shouldn’t give a rip about an end table.  She didn’t want to do it.  Later in the day she said, “I am sorry I broke the end table.”  It just happened.  I can’t blame her, but, just as she can’t keep from popping up to walk when at some level she knows she can’t do so without putting our current life at risk, I can’t keep from reacting in that first moment with frustration knowing that it didn’t have to happen.  I need not to pretend that I don’t have feelings of frustration and bury them in that pretense. Trying to do that really would make me crazy.

On the positive side, once its over, we just get on with whatever needs to be done.  My loud talking provides an immediate safety valve release of frustration.  We return to a loving relationship.  The glass lamp is now at the other end of the couch in a place she very rarely goes near.  There is a floor lamp taking its original place.  For the moment in place of my Dad’s table there is an end table that I made, a simple one that should be easy to repair if broken.  I will begin a search for something to put there that has no corners into which she could fall, something with room for the phone and a few items to reside.

It is just an end table, but at the same time it is a symbol of much more in our system of survival here, physically and emotionally.  The table is broken, we are not.

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