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).

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.

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.

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.

Medication

I can't emphasize enough the importance of medication for Alzheimer's patients.

I've written about Aricept at http://www.wearejustfine.blogspot.com today. The combination of Aricept, Namenda, and an antidepressant (Prozac) worked a near miracle for my mother, and I always want to spread that news. When she came to live with us I also gave attention to her diet and to daily exercise--but neither of these are perfect in consistency or in quality! I have to think that those Alzheimer's drugs (brought to us by God's grace and through His provision for us) are largely responsible for the fact that, against all predictions, Mom has actually shown improvement in her level of processing over the past four years.

Our wonderful nurse practitioner, Diane, has told us that medication is often stopped when Alzheimer's patients are placed in nursing homes. This doesn't make sense to me since studies have proven that people who receive medication are so much easier to care for and enjoy a higher quality of life. Diane said, "If your mom goes to a nursing home be sure that she continues to receive her Alzheimer's medications."

I plan to do that if and when the time comes, but for now Mom's level of functioning continues to allow us to care for her at home.

Keep in Step

When all goes as planned, I take Mom for two short walks a day. At around 10:00 a.m., I coax her out of doors for our first excursion of the day. Two times around our big circle drive and back to the house takes about ten minutes, and leaves Mom breathing hard. Mission accomplished!

When I get home from work around 5:00 p.m. we head out for our second walk. Maybe it's because I'm weary by this time of the day, but I always find it more difficult to stay in step with Mom in the evening. It's important that I time my steps to match hers. She leans on my arm heavily, and if we get out of synch both of us have trouble keeping our balance.

Mom is bent, and looks down as we walk. And so I must guide her, or we begin to list from side to side and once again balance becomes an issue. It's difficult for Mom to keep from attempting to stride out ahead to lead the way; perhaps because in our former life she was my guide rather than vice versa. Or, perhaps she is just anxious to get back to the comfort of her chair!

For whatever reasons, I've noticed that when I match my steps to hers and she accepts my taking the lead to plot our course, our walks go much more smoothly.

Isn't that a nice illustration of the caregiver/patient relationship? The caregiver plots the course but must allow the patient to set the pace. And for her part, the patient must be able to accept guidance.

It is my difficulty with allowing Mom to set the pace for the activities of her day that causes most of the small tensions that occur between us. My requests of her--to wash her hands for lunch, or to come to the door to put on her coat for a walk for example--take her more time to accomplish than my "hurry-up" mindset can tolerate with grace. This illustration of the importance of allowing Mom to set the pace was a nice reminder for me. I need to allow her the dignity of moving at her own rate as she accepts the guidance I offer.

Cup of Coffee, Please!

While clenching my teeth and biting my tongue this morning, I had a flash of insight; maybe because I was multitasking and managed to pray in conjunction with my tooth grinding/tongue holding exercise.

Mother had asked me to get her a cup of coffee. If I had a true servant's heart, such a request wouldn't annoy me, would it?

One of the most difficult aspects of caring for an elderly parent has to do with the reversal of past roles. Mama used to meet my needs, now I'm supposed to meet hers; and this is an ongoing heartache for an only child who was once the apple of her mother's eye. I think I'm still the apple of her eye, but for different reasons. She calls me, "My Linda," and you'd think I'd smile when she says that. I do not smile. The little voice in my head, the one you shouldn't listen to and probably won't hear if you are rightly aligned with the Lord says, "She doesn't give a flying fig about your well being. She only cares for you because of what you do for her."

Back to the flash of insight. It came to me quite clearly, not quite in time to prevent me from grimacing in Mom's general direction but it did cause the sharp retort that had been threatening to spill out of my mouth to be silenced.

The ability to ask for help outlasts the ability to "do" for oneself. Put yourself in your mother's place, and imagine that your thinking processes are compromised as you know hers to be. Getting a cup of coffee is a complex task. You must stand up. While occupied with the mechanics of standing you are very likely to forget why it was that you stood up to begin with. If you do remember your task you then must orient yourself to the room, remember where the coffeepot is kept, and navigate your way across the room. Once having arrived at your goal you must procure a cup, remove the pot from the burner and pour the hot liquid. But wait, it isn't hot. You must use the microwave. The coffeepot won't fit back into its slot and you can't see what is wrong so you leave it stuck at an angle. How to work the knobs on the microwave? And when all of these maneuvers are successful, your mother must then negotiate her walker, a cup of hot liquid and her uncertain balance to get back to her chair. When you respond negatively to her requests for help, you take from her the dignity of being able to adjust to her limited capacity to function by learning a new way to get what she needs--she asks! Behaviors that in the general population would be labeled as "lazy" are, in the Alzheimer's patient, coping strategies developed to adjust to a lowered level of functioning. Your mother is doing a good job. You, not so much.

In our former lives, my mother rarely asked me to "do" for her. I have clear memories of her jumping out of her chair to see to my comfort, to make me a sandwich or to mix up the special frosting I used to like to eat between graham crackers. And if you think these are childhood memories--no. We retained our mom-as-caregiver/me-as-child roles right up to the time of her diagnosis four years ago. So you can imagine, it was quite a shock for me to learn to be a caregiver. I guess most adult children have difficulty seeing the new limitations of parents who have become elderly, and I had somehow managed to judge my mother as a caregiver who was failing to perform her job well. This, despite the rather obvious fact that she was both physically and mentally incapacitated.

I'll get it Lord, I will. Thank You for helping me. And forgive me for my failures to be Christlike in my caregiving of Mom.