(continued from last month)

Stage Two

Ignorance

Mom looked and felt great, and because she continued to check out fine at the doctor's office, we were all blind to what was really happening.   These days, family doctors are becoming more familiar with the signs of early-stage dementia, but that wasn't the case ten years ago. I started going with Mom when she'd have her annual physicals, because she said she couldn't hear the doctor.  While that may be true (he was very soft-spoken), I think she also recognized that she didn't understand everything he said, and she wanted me there as a backup.   Physically, Mom was in great shape.  No high blood pressure, no heart disease, no diabetes.  No complaints, except a little insomnia every now and again.  The doctor said she had the body of someone twenty years younger.  He didn't ask - and I didn't think to tell him - if she was showing any signs of mental slowdown.  He gave her a prescription for a sleeping pill and some bone density medicine and then he was gone, and we were on our own for another year.  

So she must be fine, right?  This is all just a normal part of aging, right?  Nothing to worry about, right?

Wrong.   The truth was, the disease had a good hold on her and was rolling merrily along...a runaway train heading straight for a cliff.   We had no idea.

All sorts of events occurred that should have clued us in, but we missed them.  For instance, the Saturday hike I had planned with my friend Diane.  I had told Mom of my plans the night before, but it didn't stick.  My husband was out of town, and I hadn't told anyone else what I was doing.  Diane and I were out of cell phone range most of the day, and when we got back, I was stunned to see that I more than 30 messages.  About half of them were increasingly panicky pleas from Mom, and the rest were from a variety of friends and neighbors who had been looking for me.  

Apparently when Mom couldn't reach  me after several tries, she started calling everyone she knew.  She was convinced that I had been carried off by an unknown assailant.  Several of the friends she had called even came in and searched our house!  It took me the rest of the day to call everyone back and explain what happened.  After that, I never went anywhere that I didn't let someone else besides Mom know where I was.   

In our ignorance, we began "helping" more.  We'd come up with solutions as each problem arose.  To help her keep up with appointments, we put up a dry-erase board in the den and wrote her activities on it for each day.  To make sure she ate well, we brought ready-to-eat meals to her, and encouraged her to eat more often at the main dining room at the retirement center where she lived.  To simplify her vitamin and medicine regimen, we got one of those containers with a box for each day of the week.  We began putting up notes everywhere:  "Mary will be here at 2:00 Thursday" or "The church bus comes at 10:15."  We called to verify times and dates of social events, and would try to line up someone to get her there.  But despite our best efforts, she wouldn't understand or remember, and our carefully-arranged plans would fall through.  We were fooling ourselves: the dike was crumbling and we were running out of fingers.  

We were also committing the most common mistake people make in dealing with dementia patients:  trying to reason with her.   One night around 10:00 she telephoned me at home.  "Why are you calling so late, Mom?" I asked, since she always went to bed before 8:00.  She didn't understand the question; she thought it was morning.  She had gone to bed at her usual time, slept a couple of hours, then got up, dressed, and even ate breakfast.  She was ready to begin her day.  I tried to explain that it was night, not morning, but nothing I said would dissuade her.  I told her to look outside, thinking the darkness would convince her.  I told her to turn on television, hoping the news would convince her.  I finally had to go to her house and insist that she put on her nightgown and go back to bed.  She finally did, still perplexed, and remembered none of it the next day.  I couldn't believe it.  How could anyone get A.M. and P.M. confused?  This had to be more than normal aging.

Early-stage dementia patients are consummate cover-up artists.  They can come across as completely rational and as normal as you and me.  They continue to live their lives in much the same way as they always have.  They often don't appear, on the surface, to be any different.  They speak normally, act normally, go about their usual activities normally, and they can maintain that level much past the time when they are thinking normally.  So if you don't know any better, you therefore assume they are normal.  That's why, when Mom telephoned everyone to say that I was missing, they all believed her.  That's why, when the doctor looked only at her physical health, he pronounced her fine.  That's why, when she attended book club and luncheons and church, everyone thought she was the same old Lila, albeit a tad forgetful.  That's why, when I'd see her read the paper, I assumed she was comprehending what she read.  That's why, when I'd hear her washing machine running, it didn't occur to me to look inside to see if there were more than two items being washed.  Dementia, especially in its early stages, doesn't show.  And that's why this disease is dangerous.  

Looking after Mom was now becoming a daily job.  I was working part-time and had afternoons free; I can't imagine how people manage this when they work full time or have children.  She was becoming more and more dependent on me, less and less able to do for herself, and still we didn't get it.  Knowing no better, we continued on our course, giving Mom more and more assistance, covering up with friends, and maintaining the illusion that this was a normal part of aging.  She may have had an A-plus body, but her brain was a C-, and the time had come for some specialized tutoring.

We got an appointment with MemoryCare, a local nonprofit clinic that treats dementia patients and their families. The first appointment was an epiphany.  I was allowed to observe as they administered the standard test to measure cognitive function, and was amazed at what I saw.  They began with questions about time and place; what month, year, day of the week, who's the President, stuff like that.  Mom knew none of it.   None.   It was October 2003; she thought it was April 1998.   She knew we were in Asheville, but didn't know it was a Wednesday.   I was stunned.  She reads the paper every day, I thought, how could she not know this?   She did a little better on the next part, where she was asked to spell a word backwards or write a sentence.  That made sense, she was always good with words.  Then they asked her to connect dots in a sequence.  She did a few, but didn't really get the concept.  But perhaps the most revealing part was when they asked her to draw a clock face on a circle.  She started out pretty well, but ended up with 15 numbers and three hands.   "That doesn't make sense!" I said later to the doctor, "she looks at her watch several times a day!"  "Yes," said the doctor, "and she might even read the correct time when she does, but she's losing the concept of time.  Before long she won't be able to tell the correct time.  She will, however, continue to wear her watch and even look at it, but it will be out of habit, not because she understands."  Mom scored a 26 that first day out of a possible 30.  Not a low score per se, but certainly indicative of some mild cognitive impairment.  We would watch it fall slowly and erratically over the next five years until she levelled off at 8.

The diagnosis was mild vascular dementia.  It was a shock and at the same time, a relief.  To see it demonstrated so clearly, to hear it given a name, was a blow, certainly; but to know that what we had been experiencing wasn't our imagination was reassuring.   We had already tried Mom on the usual drugs for cognitive impairment, which had finally been prescribed by her regular doctor almost as an afterthought, but she couldn't tolerate them due to the gastrointestinal upsets they caused.  There were only two medicines available at the time, neither of which had been in use very long, and most general physicians didn't have much experience with them.   We learned later that these drugs, while effective in some cases, don't work for every patient, and at best provide only a temporary slowdown of the symptoms.   They didn't appear to be a good option for Mom.  Had she been able to take them, we might have delayed somewhat the speed at which she declined, but the decline was inevitable.    

We also learned at our first MemoryCare appointment about depression and dementia.  Indeed, the early stage of dementia is often misdiagnosed as depression; in fact, both of them can exist at the same time.  Our MemoryCare doctor changed Mom's prescription sleep aid, started her on a mild anti-anxiety medication, and we saw a change right away - not a large one, to be sure, but welcome.  

Things stabilized for a while, and we relaxed a bit.  Mom was still forgetful and would occasionally do things out of the ordinary, but all in all she was getting along pretty well, and we felt like we were on top of this.  We quickly adjusted to a few easy, obvious changes, such as taking charge of holiday celebrations, or hosting book club when it was her turn, or keeping up with the mail.  But however comfortable things appeared to be, the disease continued to chip away at her brain.  She was losing ground, and she knew it even if we didn't.   She would admit on a daily basis that "I'm not what I used to be," to which I would usually respond, "Well, Mom, who among us is?" and move on.  I know now that I should have opened that door a little wider, given her the chance to express what she was feeling.  I should have said something like "I know you feel frustrated at times, Mom.  Why don't you tell me more about it?"   But I thought it was kinder to appear unconcerned and nonchalant, like this sort of thing was completely normal. 

Yes, I thought, we can manage this.  Unaware, we were in the first stages of denial.

To be continued next month

"Because things are constantly changing, I am constantly having to devise new strategies to manage what is happening in my day.  Having to devise the new strategies is painful, frustrating, often causes me to lose motivation and to sometimes feel despair. I sometimes stop trying to do things - I just sit down and don't try to do anything to avoid feeling discouraged."