Update

Sorry for the lack of attention to this blog. And, thank you for the expressions of concern. We moved her to an Adult Foster Care facility in 2007, the same home she selected for her older brother (who lived there for 8 years), and my mother-in-law who lived there for 8 years too. The mother-in-law had full-blown ALZ so I had an established framework for reference when observing mom.

She passed away in October, 2010. From 2010 to the end, her mental condition slowly, but steadily, declined; though nothing as dramatic and devastating as m-i-l’s descent. Incontinence becomes an issue at some point, but she was ambulatory and eating normally up to an hour before the end.

While she couldn’t concentrate in a conversation, she could express rational answers to direct questions. She could read sentences in the newspaper when I asked her to do so, but she really focused on the advertisements and images when left to her own pace. Television always fascinated her even though she couldn’t follow a plot.  Interestingly, her wit and sense of humor never diminished.  It ended well enough, thanks to the fortune of having a family of caregivers (Romanian) who actually became part of our extended family because of the service they provided.

The stare of expectancy: I’m eating a steak!

The stare of expectancy: I’ve just taken a steak out of the broiler!

Total denial

Lynn, my mother-in-law, died after about eight years with Alzheimer’s. I’d estimate that Lee has been declining with Binswagner’s for about three years, or a little longer.

Lynn realized what she had and, as the disease progressively engulfed, was able to make important decisions in the early stages: She voluntarily gave up driving upon realizing that remembering her usual paths from A to B wasn’t reflexive anymore; she allowed family members to help her with her finances.

Lee, on the other hand, is in a state of total denial that she’s dealing with an identifiable disease.

She’s convinced her hallucinations are real.

She’s angry with anyone who tries to help her. (Leave me alone! There’s nothing wrong with me!)

She’s depressed and has absolutely no self-motivation to do anything about it.

She’s lonely, but refuses to participate in any of the structured social events at her assisted-living facility (which is probably a non-issue at this point because she unpredictably “acts out,” embarrassing herself and everyone around her).

Denial. Refusal.

Right now I wish she had something else, but still had her mind.

Cookin’ at 3:03 a.m.

I have a Borla exhaust system on my Yukon, which gets me to about as close as I can get to that low-throated, “potatoe-potatoe-potatoe” awsome-sound of a Harley Davidson at idle. Accordingly, the ringtone and volume setting on my cell phone is such that I can hear it ring while driving with the radio on. What this means is, in the clear stillness of the middle of the night, at the deepest level of delta slumber, I will hear my phone when it rings.

As I did this this morning at 3:03 a.m.

Without my glasses I could see on the caller ID it was either Tom or Lee on the other end, which sent a chill through my body because, at their ages (87 and 85 respectively) it’s not the time of day for howdy-doody chit-chat. Something must be wrong and I’m not sure I’m ready to hear about it. (I’ve always thought that it’s going to be a middle-of-the-night call from my mother notifying me of my dad’s fatal heart attack.)

It’s Tom.

“Mike, mom’s up. She’s sitting in her chair. She says she’s going to go out and buy a chicken and fix dinner. What do we do?”

(Theoretically, this should be no big deal, but the facts are that they live in a high-rise, two-bedroom apartment with a kitchenette sans oven, etc., and their meals-and the food is good-are provided as part of their monthly rental fee.)

I’m relieved. Fortunately, they’re alive. I don’t have to spend the day in grief, planning for a funeral. Unfortunately, I’m not finished sleeping, but (metaphorically) have to get up, as a good parent must, and “feed the baby.”

I could hear her in the background, cantankerous and angry, lashing out at him for calling me and thwarting her; the old double-up game: Two against one.

“She just threw a magazine across the room at me.”

I asked Tom if he thought she was going to get dressed and actually leave the apartment. He didn’t think so. Would she go back to bed? He didn’t think so. I asked him to let me talk with her, which actually notched her anger up a level. He asked her to come to the phone but she refused. I couldn’t make out what she was saying about us in the background, but it wasn’t pretty.

“She just threw another magazine at me. It hit this time. What are we going to do?”

Even though the walls in this very nice assisted living facility are solid concrete, I could sense that the volume of Lee’s anger would accelerate to the point of interrupting a neighbor if not defused, so I instructed Tom to walk, without saying another word to her – not a single word – to the bedroom and go back to bed. . .and keep one eye open.

Walk away. Take yourself out of the situation. Leave her alone. Lay low. Listen to the quiet. I hope that is what he did.

I guess, since my day is starting very early (after this it’s impossible to go back to sleep), I should recount a little about Thanksgiving since it was a turning point for me emotionally.

As a side note however, I have to say that November 15th was a red-letter day for me because we were given a name for Lee’s problem (Binswagner’s Disease) which, almost miraculously, made everything so simple and easy to understand, finally. All of the quirks and aberrations, the irrational and-as of late-childish statements, now have a label. An understandable reason. Knowing this is so liberating, if you get what I mean.

Then, six days later while sharing a Thanksgiving meal, and armed with this newly obtained knowledge that explains her periodic, foolish behavior, I was able to arrive at and pass another milestone: She’s not coming back to being her wonderful, normal self. It’s time to get into high gear and do whatever I can to help Tom structure their transitions to the next “phase.” She needs 24/7 care. He needs respite from the demands of 24/7 care.

She’s not coming back because she is really not here much anymore.

She can’t carry on an in an extended conversation because she loses focus easily. She drifts in and out of hallucinations that, when they interrupt, drag her away from whatever it is she is engaged in at the moment. Others can’t have a conversation “around” her because she has lost her self control, and interrupts constantly. She forgets her walker; she forgets her dentures.

I’d like to think she forgets her new $5200 hearing aids, but I really think she doesn’t like to wear them, therefore won’t. Without them, every time you say something to her, and I mean every time, she yells ‘what!’ and you have to repeat yourself.

I’ve finally accepted the reality that she’s just not ‘her’ anymore; the incredibly funny, caring, nurturing mother I’ve known all of my life. Now she’s high-maintenance, demanding, demanding constant attention. . . just like a two-year old.

Now wonder Tom is exhausted all of the time.

Update on Kaiser

Just talked with Tom’s primary care physician.  There are procedures. He’s implementing today. I’m plugged into the communication circuits in order to make sure everything moves along acceptably. OK for now.

Too little help and too late

Here are the three lead paragraphs in the 11/19/07 issue of The Oregonian,” Oregon’s statewide daily newspaper:

 

“Americans live in an era of 15-minute doctor’s appointments, and those minutes tick by quickly for patients who juggle myriad illnesses, medication schedules and diet restrictions.

So if you’re Jean Swank, in excruciating pain from diabetic neuropathy, unable to sleep and concerned about your asthma, which does your doctor hear about first? And what happens when you leave the doctor’s office and have no one to talk to about your health?

You could sign up for a six-week class at Oregon Health & Science University called “Living Well,” as Swank did. The program allows those who live each day in pain or discomfort to gather, talk freely about their chronic medical conditions and share tips for managing them — and research shows the classes reduce hospital trips and improve overall health.”

The headline for the article is “Chronic care helped by sense of community.”

Upon reading it the thought in my mind was: The gates open and the horses are out of the corral.”

Huh? I don’t get it, you say.

Well, what I’m dealing with is not pain and discomfort, but a massive dose of a malady called frustration. I’m frustrated with the fact that for some number of years (I’ll tie the number down more specifically after talking with Tom) the three of us have been shadow-boxing with what we now know to be Binswanger’s Disease. During those years, had we known what was happening, we could have–perhaps–taken some corrective steps and participated in some meaningful education programs and skills-development programs; communitized; felt the warmth of some ‘sense of community.’

Now the horses are out of the corral, however. Biff: The diagnosis. Bam: Best of luck to you all.

Maybe I’m processing everything with a little too much cynicism, but I don’t think so. Somewhere, deep down inside, lurks this suspicion that we should have had a diagnosis some years ago; that there was sufficient diagnostic data being generated all along that the medical professionals could have analyzed and interpreted in order to give the patient’s family some “meat” to digest; some actionable information and intelligence. Something other than what we actually received, which was a dependable pattern of prescription management that produced a series of ups and downs; over-medicated; under-medicated.

Oh well, “Americans live in an era of 15-minute doctor’s appointments.”

Yet, there was one physician, about three years ago, who said: “Lee, you’ve got to rewire your brain.”

In retrospect, now that the horses are out of the corral, that directive nails it perfectly! Unfortunately, that recommendation was compartmentalized inside of a 15-minute office visit, and its significance self-extinguished. Almost.

Over the ensuing years, Tom and I talked around the subject of Lee rewiring her brain. It was often the final period to those conversations about her and something she would be doing that was worrying or troublesome.

“If she would only rewire her brain.”

Summation. Then we change subjects and go on to something else. Something more positive.

Tom even talked with her one-to-one about the idea, discussions that didn’t go well for either of them. Imagine yourself being told to clean up your act when you absolutely think your act is in order, and perfect.

The flickering of interest in brain rewiring, albeit at a minimal level, did lead to periodical Internet research on my part, and the purchase and reading of several books on Tom’s part.

Those research efforts led me to write an email to the physician heading the Cognitive Assessment Clinic where she was undergoing her most recent evaluation (duplicative of one early in the year at another assessment clinic), the following:

Anticipating our next appointment on November 15^th, I am asking that you answer the following three questions for us ahead of time:

1. Is cognitive therapy, something reflecting the research of Aaron T. Beck, MD in my mom’s future?

2. Is neuroplasticity, something reflecting the research of Norman Doidge, MD in my mom’s future, or are we just dreaming?

3. You suggested we bring “any other supporters” to our November 15^th appointment. Can you share with me a sentence or three elaborating on what you had in mind behind that recommendation?

Cognitive therapy and neuroplasticity are brain rewiring strategies.

Here is the answer I received the day before the diagnosis:

 

Hi Mike, cognitive therapy and staying active to enable plasticity to recover any possible function is always a good idea…I know of no formal therapists here in Portland though do you?

Armed with this information we have our appointment with the good doctor the next day and hear the diagnosis, finally. And we hear the prognosis, which is, while reality, disheartening. And Tom gets a business card referring him to a geriatric psychologist where he can get some help with learning coping skills. The patient gets the usual prescription modification.

Let me be perfectly clear about one thing: I have the utmost respect for this last physician simply for the fact that he dared to diagnose. I can’t say that for several previous doctors who had the same diagnostic information in front of them.

Now it’s a matter of putting together a plan of action for Tom and Lee. Fortunately Tom, at 87, is lucid as water in a crystal spring, but emotionally and physically draining. He loves his wife and has that rare “until death do us part” commitment motivating him through the trials and tribulations.

The immediate next step is to get him locked in with the geriatric psychologist, which may present some hurdles because she is an independent practitioner, and Tom’s medical coverage is with Kaiser Permanente. Kaiser doesn’t have any geriatric specialists in its mental health services division, so they would have to approve payment for Tom going to an “out of network provider.”

I talked with Kaiser yesterday (how do you think I learned the jargon?) and will be talking with Tom’s primary care physician sometime today.

I hope they grant the approval.

If they won’t I’ll have to put my warrior clothes on and do battle.

Later.

 

 

 

Right brain; left brain

Click on this link to take fun test on which side of your brain dominates.

Click on this link to read some other bloggers comments on their experiences taking the test.

A note on this blog and its objective

After playing around with the blogging software application for a couple of hours, which included reading a number of the forum threads, I decided to change the theme (the image at the top) from a sky blue background to what’s up there now, a cityscape. I like the image because it speaks of life, activity, and the normal day-to-dayness of life with dementia; life around Binswanger’s Disease.

Too, over the weekend, I thought about the purpose of this writing effort. I’m thinking the audience I want to develop (hopefully) is the Boomer generation. Immediately ahead of them is what I’m facing now: Dealing with a demented parent.

Hopefully, there will be some nuggets on the subject of prevention that the Boomers can take to apply in their own lives. Having lived through eight years of Alzheimer’s (mother-in-law) and four or five (?) years of onsetting Binswanger’s (mother), I’ve decided that it’s inevitable that I will considerably increase the chance of my having some mental slippage as I age too, if I don’t make some lifestyle changes today.

Maiden Blog!

Two days ago, November 15, 2007, a specialist informed my dad (Tom-87), mom (Lee-85) and me (Mike-62) that Lee has been diagnosed with Binswanger’s Disease. Google it and you immediately learn that BD is a rare form of dementia that mimics many, but not all, of the symptoms of Alzheimer’s disease.

While clues that “something is going on” have been percolating in our daily lives for a long time–some funny, some sad–it’s taken way too many years for the diagnosis, with an exclamation point behind it, to be spoken into existence. This dismal fact means that the life of the afflicted, and the lives of those around her (hence the title of the blog-more explanation later), have missed multiple opportunities to “to do things differently.”

The tone of the previous sentence might indicate I have an ax to grind; anger and frustration to vent.

Don’t think so.

In all honesty, I’m not sure anybody would have done anything differently had we known conclusively five years ago what the scope of her disease really was.

This is not to suggest anybody would have trivialized anything. But if you visualize the issue as a set of concentric circles with the patient at the center, her immediate family and friends in the second layer, grand-children and acquaintances in the third circle, etc., you can begin to map points of influence, or motivational power, and take an elementary stab at who (by name) might effect useful, therapeutic change.

That is, if the patient is able and willing to take part in developing his or her own coping strategy.

According to the medical advisers we’re past all points where positive, preventative intervention might be enabled, which leaves Tom and me with some difficult decisions to make about her care and well being.

So much to learn; so much to discuss; so much to decide.

I know three things for sure: First, I’m an only child with two aging parents – which means new responsibilities; second, I’m one year ahead of the Baby Boomer generation, a very large segment of the population – which means what I’m experiencing is just ahead in the lives of, well, a very large segment of the population; and third, if you’re fifty years old (or older) you may have Binswanger’s Disease, or some other form of onsetting dementia, and just not know it. Looking at your lifestyle is a good way to start searching for indicators.

I’ve been looking in the mirror a lot since last Thursday and I don’t like what I see. Whew!

What motivated me to start this blog is not some personal need “work through my emotions” on paper. That’s not my style. What is motivating me, however, is knowing that I’m on a pretty steep, accelerated learning curve. Hopefully, I can share some insights and publish bits of information that can be helpful to someone.

(More later…after I learn how to work my way around this blogging platform.)