She knew exactly what she wanted us to make for Christmas dinner.  I had no idea what she was thinking until that moment in the grocery store.  I had asked a number of times what she thought we should make for Christmas dinner when the family gathered.  Each time I asked there was no response.  I made suggestions encouraging a yes or no answer, but there were no answers, neither yes nor no.

At the grocery, she said something out of the blue about making a list.  Then I think she said the word “salad.”  The interaction caught me off guard, since she seemed to be saying that we needed to list ingredients for something for Christmas.  We were in the throes of shopping, dealing with the person in the deli department slicing cold meat for us.

That conversation ceased for the moment.  When we were passing by the meat counter, on the way to get something on the other side of it, she stopped and said something about ham.  The options I had been suggesting as options in those earlier attempts at deciding what to prepare included things we have had in the past, a spiral cut Honey Baked Ham, a brisket, turkey, even a take out Prime Rib special from a local restaurant I had just seen.  Through some asking and answering it became clear that she was talking about ham steaks.

We got two large ham steaks.  Then she said something about grapes.  Finally she said “Grape Salad.”  That is a very tasty salad that again had never been mentioned in the many times I asked about Christmas dinner.  I had gotten only complete silence in response.

What apparently was happening is what I remember Thomas Graboys talking about in his book, Life in the Balance.  Mary Ann seemed to have had conversations in her mind that never included any words coming out of her mouth.  There have been times that she seemed convinced that she had said something, or we had talked about something when there had never been any spoken words.

Occasionally, Mary Ann has seemed to blur the line between dreams and reality, convinced that there was an interaction, a conversation about something, providing information that sounded as if is was the matter of fact recounting of something someone had told her.  What complicates things is that sometimes she is remembering absolutely perfectly something that did happen, was said, something I either wasn’t around to hear, or simply forgot.

On the positive side, it forces me to listen to her without dismissing what she says immediately even if it sounds bizarre.  It may be true.  It may not be true.  On the negative side, I am always pretty unsure and often frustrated trying to figure out which is which.

Mary Ann has not been able to participate much in the shopping for Christmas gifts.  I have gotten lists or thought of or seen something in most cases.  There was one item she remembered for someone, something mentioned to her when I was not around.  We got it.  I am not sure if it is a memory of a converation in a dream or a real one.  In this case, I am fairly confident it is something she is remembering from a real conversation.  I will find out when the presents are opened this Sunday, when we celebrate an early Christmas.

I do have to admit that while sometimes pretty frustrating, it is not boring around here.  There are often surprises, sometimes pleasant ones, sometimes not.  I suppose a couple of days of boring might be okay, as long as there was a good night’s sleep included.

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Below is a link that may need to be cut and pasted into your browser to open.  If you are caring for a Loved One with dementia of any sort, I suspect you will find it both poignant and painful — at least I did.

http://d.yimg.com/kq/groups/7465654/785021372/name/What%20is%20That.wmv

One of those on the Lewy Body Dementia spouse Caregivers’ online group reported that her Loved One asked their adult daughter,  “I don’t know what’s wrong with me or what is going on, will I ever get better?”  She wondered what she could say to him. 

Another of the members of the group who is caring for his wife and has the gifts of perception and writing replied to that post.  I asked his permission to share his words in this post before I included them here.   This was his reply:

“[My wife] asked the same question several years ago, with the same answer and result…
 
…Their entire world around them is shattering, but somehow, they see themselves as a calm center in a whirlwind… that is why it is so hard for them to realize it is them that is having the problem and not the world around them…Think about it, what would be your reaction if things you saw, people told you  were not there…people tell you that you are doing things that you don’t remember…people and places from the past appear again..even though you “know” that they cannot be???, but there they are…you just want to get away from it all…people tell you what to do, when to do it and want you to be the same as before, but you can hardly see why…..Oh, I just feel so bad for our LO’s..and I am gradually learning even after +6 yrs of this that …oh hell, I’m just as lost as ever..maybe just foolin’ myself that I know anything about anything…”
Of all people, this Caregiver Spouse, knows very much about caring lovingly and gently in the face of whatever comes.  All of us in the group have great respect for his wisdom and insight.
One of the members of the group struggles with what the doctor suggests is more about control than it is a symptom of the disease.  Her Loved One shuts his eyes sometimes when being urged to move along and cooperate.   Is that a passive-aggressive way to exercise some control in the situation, or is it just an involuntary act triggered by some misfiring neurons due to the disease?
I cannot even imagine that there is a Caregiver out there who has not wondered if some action or inaction, some slowing down of movement, some lack of verbal response is the result of the disease process or a product of a strong will refusing to cooperate. 
Mary Ann lives in a world in which, for the most part, I have control of what she does and doesn’t do and when she does it.  The style of our relationship has always been and continues to be one in which I work very hard at determining what she wants.  I think it is fair to say that I also try to find some way to fulfill that want if it is physically possible to do so.  Now, lest I sound wonderfully accommodating, I often either use far too many words along with some attitude to tell her why it isn’t possible, or I do it begrudgingly and then grump about it.  So much for sainthood!
When I watched that short video that is referenced at the beginning of this post, when I read the online post quoted above, I was reminded of just how difficult it is to be in Mary Ann’s position or that of any of our Loved Ones who have to depend on a  Caregiver.  Mary Ann is a strong-willed, independent person.  Actually, they can be pretty annoying character traits to a spouse.  Since I have at least as many annoying traits, we have actually done very well together.  She has always had a bit of a chip on her shoulder, not about to be pushed around by anyone.  Now she has to be pushed around in a wheel chair by me.  
What must it be like for her to have someone watching her every minute, jumping up and running to accompany her to wherever it is she is intending to go, suffering the indignity of having someone else clean her bottom?  What is it like to have someone telling her that she cannot use the knives and hot stove, that she cannot go down to the basement to look for something?  I can imagine that she just wants to scream, back off and give me some space.  “I’ll tell you if I think I need you.”
Then there is the frustration of not being able to follow every question asked of her and formulate an answer based on what she wants or needs.  The book “Life in the Balance” by Dr. Thomas Graboys was an eye-opener for me as he wrote how hard for him it was to try to interact verbally.  His Parkinson’s and the Dementia were impacting his ability to process information, form thoughts, put them into words in his mind and then, finally, actually get the words out loudly enough to be heard and understood.  By the time he accomplished all that, the conversations would have moved on to the next subject.
For those of us who are Caregivers, especially full time Caregivers, it is often very difficult to differentiate between willful resistance to our attempts to get cooperation and the progression of the disease process in our Loved One.  Whichever it is, putting their shoes on for a moment can help us gain some perspective and understanding.  Maybe by doing so we can lower our frustration level just a bit  and find some more patience as we say for the twenty-first time, “It’s a sparrow.”