Monday, July 28, 2008

Endless Loops

One of the most difficult adjustments I've had to make as I've become my mother's caregiver has to do with a relatively minor matter. I have low tolerance for what I call Mom's endless loops. She will get stuck on one phrase or story and repeat it every few minutes throughout an entire afternoon. I am not mature in the way I handle this. I generally say brightly, "Well, Mom, I've got to go finish up cleaning that oven," or some other such implausible excuse--and I make a run for it.

When Mom's endless loop has to do with some subject that is irritating or slightly inappropriate, it is all the more painful. For example, any endless loop having to do with bodily functions is particularly hard for me to bear. And tonight Mom's subject was swearing. As I washed and set her hair (and this task obligated me to stay in Mom's vicinity rather than taking my usual coward's way out) Mom told me about the fact that she had once been guilty of using a few swear words. In the record that follows I've deleted the actual words themselves so that the blog analysts won't censor me: Mom kept saying, "I would occasionally say words like **** and ####, and very rarely %%%%!"

I tried quoting Scripture to no avail. "The Bible says, 'Let no unwholesome talk come out of your mouth but only that which is useful for building others up," I said, misquoting Ephesians 4:29.

"Well how nice," said Mom, not meaning it. And then scarcely drawing a breath she said, "I would occasionally say words like *****...." And so on. And on and on and on.

I occasionally repeat stories to my children with a sense that I've told the same story many times before, but liking the sound of my own voice and the point of my old story I tell it again.

Somebody just shoot me.

Not really.

Lord grant my children tolerance, long suffering, perseverance, and love, lots of love. And while you're at it Lord, better give me a helping of each of those as well.

Scripture: "Be completely humble and gentle; be patient, bearing with one another in love" (Ephesians 4:2).

"Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).

Sunday, July 27, 2008

Though She May Forget...

I have just exchanged emails with a dear young woman who is struggling with the pain of losing her grandmother to Alzheimer's disease. She thanked me for sharing my caregiving experiences, and spoke of the fact that she was not certain that her grandmother recognized her any longer. I made the following response to her:

"I'm so sorry for your grief, my friend. The Scripture that comes to mind is Isaiah 49:15: "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!"

"God is very wise. For some of us, a sudden death of a loved one would impact the emotions and the mind too harshly. The trauma would be too much. I've come to understand that the long goodbye of Alzheimer's is giving me time to adjust to the loss of the supportive love my Mom gave me, time to transition to a deeper dependence on the One who will never forget me.

"God bless you in this journey."

And may the Lord bless each person who visits this site looking for balm for the heart that aches because someone they love can no longer remember. God will not forget you.

Thursday, July 17, 2008

Looking Beyond Surface Behaviors

There is an ongoing difficulty in interacting with a loved one whose capabilities have been diminished by dementia. I've addressed this problem in my previous entry to this blog; Mom is not where she once was, and I continue to look for her where she was and not where she now is!

Behaviors that would be labeled lazy or even dishonest in the general population must be viewed as being symptoms of the disease process.

For example, if I respond to Mom's reluctance to get out of her chair as though she were being lazy, I am judging her based upon behaviors that are symptomatic, not causal. If I look beneath the surface behaviors I find that confusion, uncertainty, and the inability to logic and reason are behind her need to stay in a place that is familiar and comfortable. She can still reach for the Kleenex box or the cold drink on her chair side table, she can adjust the TV volume control with her remote; in this small world she knows how to function.

Another behavior that caused me at first to either correct or chastise Mom is her tendency to fill in gaps in her memory with creative explanations based on the long term memories that are still intact. For example, if her mini-blinds are clean, she reasons that she's the one who must have dusted them, and she recently told her granddaughter that she just uses a damp cloth and runs it over the blinds once a week or so. To a caregiver, a story like this is offensive on a couple of levels, the first being that I'M the one who dusts the darned mini-blinds and would like to have credit given where credit is due! The second is an upset over the fact that this woman who was the most honest person imaginable, is now apparently making things up.

Mom is making sense of her world the best she can. It is my job to keep quiet and to allow her the dignity of creating order out of the increasing number of confusing facts by which she finds herself surrounded.

Once again, Mom's doing a good job with the circumstances in which she finds herself. And, once again it's the caregiver is the one who needs an attitude adjustment.

Saturday, July 12, 2008

We're in a Different Place Now

I recently did some cleaning and organizing in our kitchen and decided that it would be more efficient to keep the aluminum foil and plastic wrap in a different cupboard than in the location they've happily resided for the past six or eight years. I'm sorry to say that neither my husband nor I are capable of incorporating this new information into our respective memory banks. He's wearing a martyred, "Is nothing sacred?" demeanor while I stubbornly insist that the new system WILL work...once we get used to it.

This reminded me of another area of my life in which I continue to struggle to adapt. Although my mother has lived with us for four years and struggled with the beginning stages of Alzheimer's disease for several years prior to that, I am proving myself to be a slow learner when it comes to understanding and making allowance for her diminishing capacity to think and reason. For nearly fifty years of my lifetime prior to my mother's diagnosis, she was capable, clear thinking, and independent. Although I know better, I still sometimes expect her to be able function as she once did. She looks and sounds like the mother I've always known, and she puts up a good front. But incidents like the ones I've related below reveal her struggle to make sense of her world by utilizing the memories that remain in conjunction with the observations she makes in the moment she's in.

This afternoon Mom said, "Now, am I right that you are a teacher, and that this is summer, so you have some time off?" (I have been a teacher since 1978. Mom helped in my various classrooms for years.) I acted put-off by her comment, although the reasoning process Mom used to arrive at this question was really quite sophisticated for someone in the mid-stages of Alzheimer's disease. She had checked her white board for the date and had utilized her long-term memory of the fact that I had once been a teacher.

Awhile later she said, "Now, tell me why I'm here, in this room. Is it just because I'm old?" Once again, I was not particularly supportive or reassuring. I answered her in a perfunctory way and went about my business.

Shame on me when I become short tempered with Mom because she does not comprehend some situation or conversation as I assume that she should have been able to do. She's not where she once was, and I am the one who must adapt.