Jan's Story (9 page)

At first, it was no big deal. I figured I must have moved it and went about opening drawers and looking on other shelves. Something prompted me to check the top of the bedroom chest where we kept Jan's medications and, sure enough, mine was there as well. At some point in the day she had gone through the house collecting all the bottles that looked like medications and then carefully arranged them on the chest.

There was no use asking her why, because she wouldn't remember the doing or the reason. But I wondered if this was a new pattern, and one to be often repeated.

To Dick, it was a reminder of little things that add stress on the caregiver, layer by layer, and a sign that I was moving quickly down the same road where every aspect of day to day life is increasingly unpredictable and exhausting because it needs particular thought, preparation, and more patience. His note about Dorothee:

     
Oh yes … the hiding or rearranging of things is very familiar. Dorothee took everything out of her dresser about four years ago and then put it all back but in different drawers. Then she accused me of giving her things away because she couldn't find them. She would also take her doll collection and hide them in different places and forget where they were. She would tell me that someone had stolen them. I finally put them on top of her dresser, which she can't reach.

     
This all took place when I was still trying to reason with her and that made it more frustrating for me. I learned quickly not to try to reason with her. It doesn't work.

     
I don't know how you get your personal mail but I would suggest a P.O. Box or some way that she can't access. They have the tendency of hiding incoming and outgoing mail. I know of some people that had real nightmares with this issue. Water, power shut off. Collection agencies, etc.

     
I am sure you heard me talk about my spending “months” looking for Dorothee's glasses. I found them in the strangest places … the pantry, the hutch with all of her collectables from Germany, even on the hanger I have attached to our patio door so she doesn't walk into the door. I finally gave up and she doesn't wear them anymore. Too frustrating and time consuming.

Old friends who have known Jan for many years also helped me see where we were. One was Bob Hartstock, a wonderfully creative architect/designer who helped us on several renovation projects at our house in northern California. He worked side by side with Jan on some of the bigger tearing-down-walls remodeling.

After our visit in the summer of 2007, he sent me a note, a snapshot. It wasn't that I didn't see some of these things, but it was that I wasn't registering them, or didn't want to. Bob's note was both analytical and clear:

     
It appears that with simple tasks she was confident to proceed, such as rinsing the dishes and loading the dishwasher. This seemed intuitive and she did not question herself. I also observed that she seemed to zone out when completing this task. She would sing and appear to be in a very happy place, in her mind. But with the task of cooking or multi-tasking, she was lost, confused how to proceed, forgetful with the task in hand, and unable to complete the task.

     
I think she recognized the problem, but was unable to solve it. Almost like something that had to be done, but she forgot the skills how to complete the task. Cooking dinner: she knew you must cook the steaks, but was unsure how to cook them. And sometimes she was unable to locate the steaks. Travel: she knows she will be traveling, but not sure where or when. Social functions: as long as you are there and in sight she knows she is fine. Although I think she also felt safe with me and I probably was very protective of her, too.

The changes were more obvious to Bob because our visits were sometimes many months apart. To me the progression was incremental and easy to miss. But when I shared this with Dick, he saw something different and ominous. His take:

It appears that Jan is starting to regress into her own little world. I note Bob's comments about singing and a very happy place. This goes along with the loss of short term memory. This is how Dorothee started before she found her “friends” in the mirror.

In September, 2007, there was a new incident while we were in Beijing; Jan got confused, dizzy, and couldn't stand. We went to the small medical clinic in our hotel. The doctor was concerned about a stroke, so we took an ambulance to a well-equipped Western-style hospital on the outskirts of town, where the cause was quickly identified.

It was a urinary tract infection, and it hit her especially hard. The good news was that it was an easy thing to cure. Yet something almost routine turned into one of those windows into The Disease. Jan had a series of tests to help with the diagnosis. One of them meant giving a urine sample, something almost all of us has done at some time. But Alzheimer's makes the routine into the bizarre, as I wrote to Dick.

When we took her to the emergency room on Monday for what turned out to be the urinary tract infection, they asked her to give a urine sample. Two days later when I came home I saw a coffee cup in the bathroom full of urine—somehow she thought she needed to “give” another sample. She covered it with a note saying “do not touch” and that it was for a “special lab” that night. Then she used soap on the mirror to draw arrows at the cup/sample. Oddly, after the emergency room run on Monday she could not remember it by Tuesday. But last night (Friday) she started talking about some of what she remembered.

There was another facet I could not anticipate. During the exam in the emergency room the doctor ordered a CT scan, to make sure there was no stroke, and it came back just fine. Except they found that the front part of her brain was beginning to atrophy.

Dick pulled no punches:

Brain atrophy is the shrinking of the brain which is, in reality, the brain dying. This is what happens to the brain with Alzheimer's. As the neurons can no longer communicate, they die.

It was also around this time that I hired what I called the “Jan Buddies” when we were in Beijing. They were English-speaking Chinese women, often young college graduates, who could be with Jan and give her the confidence to go out and about in Beijing since she didn't speak the language. Having someone with her also meant she never felt panicky about the chance of getting lost. I began seeing a new pattern of Jan— trying to hide the changes—and she did this with an innate cleverness by compensating for what she couldn't remember.

As an example, she and her “Jan Buddy” went to a local frame shop. When I got home that night, I casually asked when the framing would be done. She couldn't remember, so she came back with a different answer. “They work pretty fast.”

She was increasingly taking notes, writing down the simplest of chores. In the Beijing apartment, we usually called room service for dinner. She started writing down our order because she could not keep in her mind “hamburger” or “pasta” even for the minute or two it would take to walk to the phone and call room service and give the order. It was a sign, as if I needed one, of how her short term memory was so far gone.

I asked Dick if this was all about compensation. He offered a look into the future that was tough to take.

You are extremely correct. Alzheimer's patients in the early stages are very clever in the ways that they compensate. They all do different things. Some like Jan write things down or give a general answer. Dorothee would answer my questions with other questions. She would also act as though she didn't hear me when it was quite clear she did, so I would ask the question again. Unfortunately, this will only last for while, and then Jan won't be able to make the notes or have the ability to answer the simplest of questions. This took Dorothee about two years before she wasn't able to compensate anymore.

It was about this time that I realized how the personal toll on me was building. I was now the living embodiment of the Alzheimer's book title:
The 36-Hour Day
. The days felt like they were very much 36-hours long, or more. I couldn't change the amount of care that Jan needed, and yet I needed a break to get back my own energy.

Dick told me about his going away on a trip, taking a break from being a full-time caregiver and how he found it rejuvenating. I decided to try the same thing, even though I was uneasy about leaving Jan. Yet, this needed to happen. It was the beginning of acknowledging my exhaustion and, while I still didn't see it as clearly as that, I at least understood the need for a change.

The opportunity came because I had a problem with my eye. I had surgery done in San Francisco, and the doctor wanted me back for a follow up exam. I booked the flight but changed my usual habit of calling friends when I was visiting there. I didn't have the energy to face anyone, a sign of my tiredness. And I was also tired of talking about the changes in Jan to other people, dear though they were. Each recitation was a reminder of what was happening to her, and each reminder was about what I was losing. I needed a break from this, as well. It felt selfish but it was a much-needed physical and mental recess. It also meant sleeping for hours in a hotel, maybe watching TV, ordering from room service, and not talking.

It was exactly what I needed. The world went on for two days without me. I slept a lot and walked a little, and allowed myself the intense pleasure of doing nothing. I thought myself wise, because I would come home rested and recharged and better able to care for Jan.

Then The Disease crept in, taking advantage of my absence by taking Jan down a little more. The trip to San Francisco was a turning point, becoming the end game of how I was then caring for Jan. And it unfolded so innocently and amid my best laid plans for my absence.

While I was in San Francisco, I had two women friends from the Beijing office come to the apartment and take Jan out for breakfast at our hotel coffee shop. One came one day, the other the next, and my intent was both so she would have company and make sure she was okay and also to check that she had taken her pills. They were loaded in a day-by-day dispenser that stretched across the week.

How clever of me, right? It set my mind at rest knowing Jan would be monitored. Upon my return, I discovered that my clever plan was a flop. While I was gone she took all the pills out of their compartments, the entire week's doses, and rearranged them. There were too many this day, not enough for the next. The friends couldn't know this, since their job was to inquire whether Jan had taken her pills, and Jan confidently answered both days, “Yes.”

Changing the pills was new and dangerous behavior for her. My day job was often about traveling, and now I realized I couldn't leave her alone for even a day because she might re-do her pills again.

And even though I knew better, I was still surprised at how changes could happen so quickly, and how I was caught in this constant struggle to accept, adjust and surrender to another reality-adjustment, another new normal. And there was a new normal I now had to accept.

It was time for Jan and me, who seemed to have everything we needed by just being together and who cherished our alone time, to realize that we could no longer have that. I needed to make another change—a full-time live-in caregiver. I'd reached the point where I could no longer trust her with her own pills.

The next phase of my caregiving job was now about finding the right person who could move in and help me with Jan. And even though I knew what had to be done, another part of my brain ached over yet another ending of Barry and Jan. But if she could no longer be left alone, then I could no longer care for her by myself. Our Barry and Jan private life … what nourished and delighted and sustained us … was ending. Not changing, not shifting, not adjusting. Ending. And not only would we never get it back, this ending was but a prelude. There were more endings out there, and I needed to face each new one, to incorporate and adjust. More than anything, I needed time. But The Disease was accelerating. It didn't care how fast Jan was changing. It set its own pace. It moved at its own time.

Maybe it sensed victory as it robbed her, and that made it hungrier to claim more of her ever faster—quickly and without mercy. The Disease mocks not just the one whose mind it is stealing, but the others around her trying to fight back.

Only now there was no fighting back. The retreat had begun.

Jan had her annual visit to the neurologist where she took what is called the Mini Mental Test. It checks for memory, cognition, thinking processes, etc. The highest score is thirty. Anything below twenty-seven indicates trouble. Last year Jan scored fifteen and this year it dropped to six.

The loss of memories from what we do during the day is incredibly sad for me. I try to plan special things to help her. For instance, in the roughly four weeks we spent on vacation in northern California, we dined with friends every night but one. I wanted Jan socializing to the hilt. Yet when all was said and done, much of it was lost to her. “It's just a blur” she said one night about what we had done that day.

Her once endless taste for travel is drying up because it is hard for her to remember where we are if we are in strange surroundings like a new hotel room.

She remains constantly cheerful and upbeat, which is wonderful and yet, in some way, makes it worse. It is a reminder of what a sweet and optimistic person she is.

We have entered the “I don't know” chapter. I don't know what Jan will be like when she wakes up, or when I come home from the office, or in the evening before or after dinner. The things I am seeing are bewildering and confusing and, for her, frightening with fewer than ever words to express herself.

This is prompted by a change in our reality. We are now joined by a live-in caregiver, Diane Malone, who flew with us to Asia from her home in Tacoma when we returned from the US in mid-October. Diane is amazingly calm, with wisdom that comes from her experience as a nurse in everything from frenzied military medivac C-130 airplanes in the Persian Gulf War to the gentle calm of working in an old people's home.

Having a caregiver meant telling Jan that she can no longer go outside alone—not to the grocery store, or the gym, or for a walk. It triggered a combination of rage and fear as she understands and loathes herself (“I don't want to be a burden”) for what is going on.

The rage is something I have never seen in her—a fist clenched, red-faced, physically uncontrollable shaking fury. It was first aimed at Diane who personified the new limits to her freedom, but now she realizes (sometimes) that it is really anger about having Alzheimer's. It comes and goes, this thunderous or deeply sullen rage, often triggered when we tell her that she can go anywhere but now she must always be accompanied. The fear is, in truth, harder for us all. She knows or senses what she is losing—memories and her freedom—”I'm losing my mind, aren't I”— but not how to stop it or fight it.

Diane and I tell her that going out, seeing new things and having new experiences will stimulate her brain, working it like you work a muscle to get it into shape. We call ourselves—Jan, Diane and me—the “Jan Team,” working together. Sometimes we widen the team so it includes all of you, the people of her life, often by name. She understands and embraces this … sometimes.

When the understanding and the comfort of remembering friends fades, the only thing left is fear. Then all she wants is to cling to me, as if somehow my arms and closeness can protect her. I hold her a lot these days, whenever she needs it. Sometimes, it seems like I am holding a terrified child afraid of lightning flashes, and storms, and things she can't understand.

Her fear is contagious. I feel it looking into her face and knowing that some part of her is no longer there, that she is no longer my Jan except when she is—and then not knowing when it will be gone again. After morning coffee? Before dinner? All day? Not today?

Most of my tears these days come from this: for the first time, I have seen her panic as she feels herself change, as she grasps tightly to memories and experiences, as if holding on means they won't go away, and she begs within herself to somehow get better so she can go back to being the independent optimist she once was.

Part of me wonders if I should share these personal thoughts with you. Please understand that this is incredibly hard for me. But those who have gone through this warn me of the danger of the stress to the caregiver. I've resolved to remain as open as I can allow myself to be, if only because I'll be of no use to Jan if I falter under the pressure of what's going on.

I've written before about losing my best friend as Jan changes. The other day I realized something else that hit me hard. It is not fear—fear has been my midnight companion since this started. It is that given all the time we spend together, I am increasingly alone. I will hold tight to her hand for the whole journey, but all my tears cannot stop that she is moving ever slowly … away.

We do a lot of explaining reality these days—explaining the new circumstances, why we have a caregiver, why she can no longer go out alone. And I hold her, even though I can no longer protect her against the terror of knowing.

~Barry