Miles to Go and Promises to Keep

I had several strong rules of thumb that kept me successfully afloat through the hazardous, uncharted waters of child-rearing. The first was, “make your choices wisely because ultimately you will reap either the rewards or the consequences of your actions.” The second was sacrosanct, “I will keep all promises and all threats to you.”

The excruciating part for any parent, of course, is watching on the sidelines while a child is reaping consequences from bad choices or receiving punishment after ignoring a threat. As an advocate, a parent always wants what’s best for the child and certainly would prefer the child’s life to be angst and consequence free. But that is not real life and it is never in the best interest of the developing person to shield him/her from the result of poor choices, especially if he/she knew in advance what the options were.

My old parenting skills, now long retired, are beginning to re-surface and I keep wanting to drag them out and dust them off when Mary behaves like a child. This is a daily struggle for me now. I go to sleep every night talking myself down. I tell myself that, though she acts like a child, she is not a child and the point of correcting a child is in the hope of teaching and guiding the child toward a happy, responsible, successful adult life. She is not advancing, she is retreating, unlearning and regressing. There is no hope and thus no point.

Nevertheless, dealing with her behavior can be as exasperating as dealing with a headstrong, determined toddler. Unfortunately, there is one big difference though, not counting the hopelessness factor. Unlike a toddler who simply wants what she wants, she also expects to continue being respected as an adult even as she is acting out like a little girl. This is the part that wears me out. I have to rise above this conflict everyday. I cannot help but feel that, regardless of her condition, she is still accountable on some level, at this stage, for her attitude and I cannot fix it or change it but neither can I put her in time out for it. So, instead, I let her own it and be miserable if that is how she prefers to be. Amazingly, when I give up trying to meet her ever increasing expectations, she does back down. There is definitely a cause and effect in this response which points to at least a glimmer of cognitive thought processing. Or perhaps, like a child, she is just afraid of the unknown and what might happen if she pushes too far.

It is what it is. Raising kids was hard too. There were times when exhaustion, exasperation and stress washed over me at night before I fell into the relief of unconsciousness. But still, I kept the promise I made to see it through and I will again.

The course is set

Life's hard but yet

We will walk on

Around each bend, until the end

We will walk on

We chose to take this road called faith

We will walk on

We trust that You will lead us through

We will walk on

(Walk On by 4Him)

Monday Monday

It rained during the night from late Sunday to early Monday. Suddenly she is afraid of rain. She says she didn’t sleep all night. She took two of her “sleeping pills” i.e., Tylenol PM. She fretted about the noise, the lights on at R’s house and imagined (hallucinations?) men working over on the back deck all night. She blamed most of her general distress on having to endure a “storm”. But there was no storm, just rain. No thunder, no lightening.

I think the problem is something else.

She has been in her trailer on the farm for a month now. She comments constantly and tells everyone about how wonderful it is to have family around all the time and she doesn’t have to cook because she has her pick of what to eat and who to eat it with every night. But, as I feared, even this is not enough now because there are periods of time, especially on Mondays and Tuesdays when she has to be alone for a few hours at a stretch. A pattern is emerging. She is pitiful and grumpy on Mondays. It’s a let down for her after having two or three days in a row of constant company. So, a month into this and she still is not fully satisfied. She needs more. The question is, what does she need and what is enough?

It’s no longer just the major transition of going from 24/7 companionship to being mostly by herself for four years. I think she is afraid. I just don’t know exactly what it is she fears. Fear of rain or being alone for short periods is irrational at first glance. If I peel back the layers over all this, I could make a wild guess that she is afraid to die, or, maybe she is afraid she will be alone when she dies. She will say in the most matter of fact rhetoric that she is ready to go be with her husband, that she has lived a good long life and she is tired. But when she had her last TIA, she admitted afterward to being scared to death. One who is truly not afraid to die, who knows for sure where she is going when she breathes her last, does not react with fear at the moment when death is possibly knocking.

I think she says what she believes everyone wants her to say but deep inside she both fears her mortality and, more precisely, her complete lack of control over something she does not really understand. She has carefully planned and executed every detail of her life for the past eight decades and now she is faced with having to relinquish herself to something she has no say so in.

I realize it’s hard to comprehend but if she could but surrender to the One who always has our best interest in hand, she would fear nothing at all anymore. There is no way anyone can help another grasp this peace that surpasses all understanding. It must come from the individual answering the call to listen, obey, and trust.

This is the ultimate “alone” experience but with the right understanding, there is no need to fear being alone, because, for one thing, you aren't.

Jabberwocky

Over the course of the last six decades I have developed a coping mechanism for enduring an unpleasant or distressful irritant in my life. It’s a fairly simple technique and I find it works well regardless the circumstance. Currently I find I’m using it more and more to deal with the relentless jabbering. She never stops. This new babbling is not exactly the same as “old folk’s redux” which is common among elders. Humans of all ages love their own life stories, but elders aren’t making new stories so they tell the ones they have over and over and over.

No, Mary’s constant chatter is driven by something else now. But it is a disconcerting mixture of her normal well-worn stories sprinkled with odd comments that either do not fit or just make no sense. Sometimes she’ll toss in a question that is difficult to answer because it is constructed in misconception. But it takes me by surprise because it is usually regarding something she should know. This is consistent with both AD and stroke. Basically it’s just brain damage. Parts of the language center in Mary’s brain are broken.

But saying this does not make it less maddening to be subjected to the incessant flow of minutia. My first line of defense is to simply tune out but that can backfire when I am suddenly jerked back into her one-sided conversation with a question, “Don’t you think...?” Since the problem has grown two fold since her mild stroke last week, I had to pull out and dust off my old tricks for dealing with aggravation lest my language center blows a fuse.

First, I have to admit I am aggravated. Yes, yes, yes, I am, I am. When she starts in on how she washes her clothes (mostly jersey knit tops) and “irons” them by taking them out of the dryer still damp and hangs them up and then smoothes them out with her hands, like this, and lets them dry and then doesn’t ever have to use an iron, she hasn’t used an iron in twenty years, and you should do that too and all you need is about two feet of wire rack and some hangers... I want to tell her to SHUT UP! I’ve been doing laundry for FORTY YEARS! But I can’t do that, and I won’t, so long as I still have control of my language center. To maintain that control I have to face the demon in front of me and analyze what exactly it is that is bothering me. Basically I shrink it down to manageable size by breaking it down to the cellular level with close examination.

Here’s what I know:

She is regressing. With every step forward in the decline of her mind, she is stepping backward in the progress her brain made from birth to present. Children gain language first by babbling and trying out sounds and then by repetition of words learned. At a certain stage toddlers have enough words and sentence making skills to ramble relentlessly. Eventually they mature enough to gain control of their word lock. This is the mechanism in the brain that stops the stream of consciousness thoughts from falling out of the mouth. We all think all the time but we only verbalize this unpunctuated river of words when there is a good reason to speak out loud. When the word lock is not engaged, this river flows unchecked, just like a toddler who has learned how to talk but hasn’t learned when and how to stop. This is where she is now. She is an old toddler whose word lock is not working. Comparing this to the way I feel about my two year old grandson’s babbling, I can see why her jabbering bothers me and his makes me laugh.

Expectations. I expect her to be a grown up with all her learned and earned facilities humming properly. I judge her based on where she ought to be, not where she really is. But due to the inevitable process of aging combined with the additional burden of disease, she is becoming a child again. So, really the problem that causes my aggravation is not her, it’s me. She is not doing it to annoy me, it isn’t a conscious effort on her part to make me crazy; she is simply behaving exactly like my grandchild, whom I consider to be exceptional in all ways. So, it isn't her repetitions that annoy me, it's something else. And that something else comes from within me. Perhaps it is the distress of watching her regress or perhaps it is fear of my own future.

This is where the coping thing kicks in and I have to adjust my attitude.

The Difference a Day Makes

Things changed again on Saturday morning. Mary had a small stroke, a TIA (Transient Ischemic Attack). It was the worst one she has had thus far, involving paralysis of her right side, her arms, legs and face. She could not talk. It lasted about thirty minutes from beginning to end but she was weak and wobbly the rest of the day. She was also aphasic so she could not string words together coherently.

Having admitted her to Hospice just this week was an amazing blessing. We were able to call her nurse who came out and assessed her and took her vitals. Her BP was elevated but after calling it in to the doctor we were assured this was normal for TIA.

Yesterday she improved as the day wore on but it is obvious that she is struggling more and more with her language and cognition now. There most certainly is a difference between the loss of words and memory that AD causes and the loss of function brain damage from a TIA causes. Before the TIA she knew she was missing words which kept her frustrated. Yesterday she would say something quite normal and then suddenly say something that did not make sense, but she didn’t realize this because it made sense to her.

Saturday, I sat and quietly watched her as the nurse was examining her, talking to her, listening to her. She seemed markedly smaller somehow, much older and fragile than she was the day before. There is no easy way to say this, she is dying by inches but Saturday I think she skipped forward a few steps.

The Hospice team has been coming one at a time this week to meet and interview her. The Chaplain came yesterday. I cannot say enough good things about Hospice right now.

Time Out

I didn’t choose this respite, it sort of chose me.

Things have been needing done at our house (where we hardly ever are anymore) so we lined up service calls for today, three of them, exterminator to get the squirrels out of the attic, guys to move the dock (lake is up!), and a plumber to fix a leak. I made sure Mary was okay in her trailer at the farm and being checked on during the day. Knowing that I was going to be trapped (oh please don’t throw me in the briar patch!) at my quiet house all day, I gathered things to have with me. My laptop, (a given), the book I am trying to find time to read, Alzheimer’s From the Inside Out by Richard Taylor, a large bag of Cheetoes (which is a food group of its own I think and if not should be), coffee, water and my Bible.

I made myself comfortable in my favorite schmuchy chair, then I read, read, read, wrote, read, wrote, munched and wrote some more. Periodically I opened the door to a service person and then quickly returned like being sucked by a vacuum to my well-stocked command post.

It occurred to me how strange life is. Imagine thinking being stuck at home all day is equivalent to being on vacation.

I’ll take what I can get, when I can get it.

Word Thief

Helpless. That’s the best way to describe watching an LO (Loved One) slowly disintegrate from AD. It’s not like cancer or some other death sentence because it vacillates, at least in the early to mid stages. One minute she is rambling in incomplete sentences because the words she wants to use will not come. And then, out of the blue, she can retell an old, often repeated, story verbatim with nothing left out. It makes me think that our brains can operate like a damaged tape recorder. Her playback button still works, most of the time, but the RECORD button is broken so when the topic is something current, what comes out skips and drops leaving gaps. The listener has to figure out what is missing.

What makes AD worse than a diagnosis of cancer is that she refuses to accept that she is struggling with mental decline so there is no good way to help her make peace with what is happening to her. She has easily accepted her bladder cancer. We don’t even talk about it anymore, especially since she doesn’t have pain. But when she asks the same question over and over, or she tries to explain that she cannot get the TV remote control to work so she can watch a program scheduled for 5 p.m. when it is still only 3:30, I am left with no words to help her understand.

Apparently AD is a word thief and can steal words from the afflicted as well as the caregiver.

The Voice of Reason

Her once good rationale is all but gone now. Short term memory is one thing but reason and the ability to grasp simple concepts is apparently more important to successful day to day living than remembering how to do something. DH told her on Saturday, again, that she is never going to be able to drive her car again. They had, what he thought, was an honest, in depth discussion about the Alzheimer’s and her continuing loss of memory, something as simple as being unable to turn on her computer, which she has been doing daily for ten years. Or not being able to figure out how to turn on the TV even with simple instructions in front of her. Or adding and subtracting in her bank register. The list is growing.

But those things, while they do impact function, do not take precedence over her lack of understanding why she cannot drive and why we moved her from her house to the trailer. No matter how many times we have told her, and regardless the simple terms we use, she still does not understand that she complained daily that she was tired of living by herself. Even as we were making the plans to move her to the family property, I knew there would be something for her to complain about once it was done. She is a complainer by nature and that has nothing to do with her AD. But I did think, once she had so much more time with family and being there within steps of someone to help her if she needed it, she would settle in. But I knew, nevertheless, whether she adjusted or not, the biggest problem of her being alone in her house, several miles away, especially at night, would be resolved, or at least eased, so moving her was as much about our ability to take care of her better as it was about her dissatisfaction with her life the way it was.

In calm conversation she will agree that something is wrong with her, that she doesn’t want to be alone in her house, especially at night. But any time an opportunity arises for her to complain to someone else, she will say, “My relatives think I have Alzheimer’s but there’s nothing wrong with me.” and “I don’t know why I am in this trailer, I ought to just go home and sleep in my own house.”

I’m a problem solver. This means any time I am confronted with a problem I instantly kick into high gear, searching for solutions often to the point of obsession. I know I can’t cure her. I know it’s going to go downhill from here, maybe even to the worse case scenario of having to put her in a 24/7 care facility. But still I find much of my day devoted to seeking and thinking of innovative ways to resolve this dilemma of Mary’s decline. How to deal with it? How to deal with her daily issues? How to make her be something she can't be anymore - reasonable.

So far, I’ve got nothing.

The reason for that is the lack of reason. Even if I found the exact right words that she might understand, tomorrow she will have forgotten completely. And this is truly the diabolical, devastating, indeed evil, result of this disease.