I don’t know.  I don’t know whether we are in a time of decline.  It is beginning to seem that way.  I just don’t know.

We had a good day and a difficult day all at the same time.  It was a good day because we got to see our Granddaughter sing in a choir concert this afternoon.  She sang wonderfully — something very important to this Grandpa whose life revolved around singing in earlier years.  Grandma got to be there too.  Both Grandma and Grandpa got good hugs today. 

Mary Ann slept a little later than usual.  She spent a couple of hours with one of the Volunteers from Church.  While I was away from the house during that time, reading, thinking and watching for birds at a nearby lake, it appeared that the time went well at home.  Mary Ann and her Volunteer Visitors seem to enjoy each others’ company.  Today, the Volunteer read to her from a novel they have been working on together.   She had with her the ingredients for a very tasty Asparagus Quiche.  We thoroughly enjoyed having a piece of that for lunch before leaving for the concert about an hour away. 

We enjoyed the concert, the music was well chosen and very well-performed.  The Children’s Choir of which our Granddaughter is a member sang first, and a choir of high school-aged girls sang some very interesting and unusual pieces.  All the music was very engaging and entertaining.

Afterward our Son and Daughter-in-Law treated her parents and us to dinner at a Cheesecake Factory restaurant.  It was an early Mother’s Day present for the two Grandmas. 

We went to out kids’ house for a while afterward and then headed home.  When we got home Mary Ann and I both had a little bit to eat since we the meal out was in the mid-afternoon.  Mary Ann struggled a bit with the food.  She started doing something she has done on occasion in the past.  She started what appeared to be cleaning her fork in her ice water.  She did it with the for she used for some pieces of meat.  Then she did it again with the spoon she used when eating some of her favorite jello (Seafoam Salad, if I remember the name correctly).   I asked her why she was doing that.  She said she was eating the ice.  It seemed that she was saying that to cover the fact that she really didn’t know why she was doing it. 

Later, she was washing her hands and spread some suds on her forearm.  I asked her if there was something there that needed washing.  She answered that there was not, but that her mind had told her to do it. 

She seemed to me to be a bit disconnected during the afternoon.  Since we returned from the last trip away from home, she has seemed to be confused at times, and she has slept during the day more often than has been so in the past.  She has struggled more with hallucinations. 

The confusion for me is that there is no way to know if what I am observing is really a decline, or just a cluster of glitches that will eventually pass.  We have experienced declines that have lasted, and we have experienced changes that came and then left after a time.   I may be reading too much into some minor miscues. 

Tomorrow, Mary Ann will have a small Basal Cell skin Cancer removed.  She has been through this before.  The word Cancer scares her.  The Dermatologist and I have both explained that this particular kind of Cancer is very treatable and not at all dangerous when removed at this stage.  She has still voiced deep concern. 

How she responds to this procedure will reveal more about whether she is in a lasting decline or just a temporary move. 

Caregivers are often confused by circumstances such as these.  We just don’t know what is happening.  The challenge for us is to deal with the feelings associated with a change.  If we work through the process of grieving the loss of one level of functionality and alertness, we are vulnerable to more confusion if there is improvement.  Then comes another round of grief if the decline comes again. 

Over the years I have observed an odd response especially in the close family members of someone who has come to death’s door on account of an acute Cancer.  If the person rallies and regains strength, there are sometimes feelings of resentment and frustration in those who have been a part of the journey.  It is as if they have gotten down the path toward acceptance only to be forced to backtrack to an earlier place. 

The result of traveling back and forth in the grieving and acceptance process is sometimes a sort of numbness that sets in.  People are afraid to let themselves feel much at all.  They have felt sad, only to be jerked out of that mode by their Loved One rallying. They have celebrated improvement and become hopeful for continued better days, only to have their hopes dashed by the next relapse.  I have heard people talk about feeling angry at the person who is sick when they have rallied again and again after being at death’s door. 

It is an odd response.  It is embarrassing.  People don’t want to admit to those feelings.  In my role as a safe person to talk with, a person who is bound by a vow never to share what is told in the context of confession, I have heard people admit to feeling angry when their Loved One has rallied. 

Caregivers have all those feelings as the roller coaster climbs high, only to plunge again. 

Tomorrow morning may bring change for the better.  It may not.  Tuesday morning may bring change for the better.  It may not.  The same goes for Wednesday, Thursday, Friday, Saturday and next Sunday — and every day after that. 

I am grateful to have a Source of strength that provides a sort of beacon as this journey moves in fits and starts, steps forward and steps back.   Each of us needs some place to turn for internal strength.  Whether it is rooted in a particular spirituality or in our basic humanity, strength is needed as Caregivers negotiate their confusion. 

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