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Alzheimer's is like a one-way sign to nowhere.

Alzheimer's is like a one-way street to nowhere.

When he didn’t remember the water gurgling from the ground on our dream property, I was stunned. Purchased in the late 90s with thoughts of building a country home,  Ken seemed to be without further confusion regarding our future. He still talked about drawing plans as soon as he found someone who could give him the structural details he needed for trusses.  The building site overlooked rolling hills covered with heritage oaks and pine trees extending to a distant lake, and then blending into more misty greens and rolling hills eventually vanishing into the skyline beyond.  Whether we were watching the sunset or just drinking in the magnificence spread before us it was everything we had wanted for our retirement years.  His life-long goal:  to design and build our own home in the country.  Would it still be practical knowing what I suspected?  Only time would tell.

The difficult part about Alzheimer’s is that when you don’t remember something, you don’t remember that you don’t remember. Years ago, Ken vowed he was not going to have the end of his life be like that of his parents.  I have since wondered if he was aware of his forgetfulness – his confusion — aware of how often he had seen the gurgling water which fed the pond.  If he suspected, in the least little way, was he concerned about what might lay ahead for the two of us?  Or could it have been his procrastinating nature, or, as he claimed, was it the difficulty in finding someone to build trusses which caused several years delay in his settling down and actually drawing the house plans.  These kinds of questions can never be answered.

Ken was of the old school of engineering where everyone still used a slide rule, tee squares and a bulky drafting machine. With the computer age looming over the horizon, his firm was just getting acquainted with the practicality of introducing this new “intelligence” into the business.  Desk-size models they were not; their first computer purchase was the size of a king-size freezer chest.  Furthermore, computer-assisted drawings (CADs) to replace the drafting department would be a thing for the up-and-coming generation of engineers, and Ken would be retired before computers became a “must have” in many businesses. No matter; whatever it was that motivated him to get started on the project, his finally doing so came as a pleasant surprise. Could the possibility of finding a truss builder just 60 miles away have given him a jump start?  A new resolve to stop procrastinating, or did he feel a sense of urgency that time was running out?  Nevertheless, he finished the drawings for our proposed building even though it was several years after the water gurgling incident.  His ability to pick up his tools of the trade and accomplish the tedious work of creating accurate drawings was a bit of a reprieve for me (and a novelty to the planning department who were used to seeing only CADs).  Nevertheless, I was more than pleased.  Perhaps we could go forward after all. Yet, I had to acknowledge my observations.   It wasn’t as if there were no more memory-loss incidents.  There were many which I doubt he noticed – or did he?  Troubled, I once said to him, “I worry when you forget things.”  His usual answer was flippant, “I only remember what’s important.”

He made an appointment with our insurance agent whose office was on a familiar street, yet Ken couldn’t find it.  Even parking the car and walking to follow a sequence of numbers he couldn’t find the address.  It was my guess the number he was looking for was across the street and he had forgotten about odd and even numbering, so he returned home.  I also began drawing maps for him to visit friends who lived nearby.  He missed luncheon dates with volunteer committees because he couldn’t find the restaurant although I reminded him we had been there. “There are too many places to eat in that shopping center,” he complained, “so I gave up.”

I felt stymied, and what was there for me to say?  Should I remind him that it appeared he was heading down the same path his parents had traveled?  Was he aware of his own forgetting – his confusion – or was he in denial?  I recognized the signs and most of the time I chose not to remind him and we didn’t talk about it – at least not in depth.  I just continued to allow it to happen.  Isn’t that’s a silly statement?  I wasn’t allowing anything.  There was nothing I could do to stop it.

In January of 2004 we paid our first visit to the neurologist.  I explained what I had observed and added I was trying to avoid the “A” word.  He prescribed Aricept and agreed that, for a while, we could avoid the “A” word and see what happened during the next 12 months.  The following January the doctor told us that Ken did, indeed, have Alzheimer’s. Slowly, our life began to move in another direction, one we never would have chosen: a turbulent, unchartered one-way street to nowhere.

Photo courtesy of http://www.flickr.com/photos/cbroders/5632294511/.

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 For the loved ones who have been entrusted to me – my husband’s and my parents (three out of four having Alzheimer’s) and now Ken who is well into advanced AD – I have always endeavored to do my very best as their caregiver.  If that sounds a bit martyrish, I don’t mean it to be.  Sometimes in life you just “gotta do what ya gotta do,” and all in all it’s been a labor of love and devotion.  However, at times I feel as if I’ve lost my identity — my very own place in the world — especially without Ken by my side to help me over the hurdles.  Feeling tired when the weather is scorching doesn’t help either.  Nevertheless, it’s still Ken’s well being that’s paramount, his comfort, nutrition, cleanliness and security – it’s all a part of my long-term goal.  Coupled, though, with managing our rental property, our personal finances and home, assistant to Ken’s caregivers, and all sorts of things that just pop up without warning, there are days when I can’t help but feel, “Hey?  What about me?”  I suppose Thursday was one of those days.

It was hot in San Francisco’s Bay Area. The East Bay, where we live, is several degrees warmer than the City itself.  Usually, weather conditions here are near perfect.  Once winter passes and the seasons get into spring and summer, the days are sunny and comfortable.  However, when the temperature zooms from the 60s to the 80s from one day to the next with no gradual warming period in between, people tend to be a tad terse.  Myself included.

Rental property was something Ken and I thought to be a good idea when we were younger.  It would be a wise diversified investment to our “portfolio.”  The venture has been a good thing all of these years when we both worked together, using our “How To” talents to restore, renovate and rent our real estate purchases, but now that Ken is unable to do any of the work, I find it impossible for me to do it alone.  We have great tenants who keep up the interiors, but the outside of our 4-plex needs constant maintenance and yard work.  Ken and I did all of that as well, but now there is just me and the person I hire.

Thursday is yard day.  With the heat already promising discomfort at 8:00 a.m. I wanted to call my help and cancel mowing, trimming and sweeping, but I knew I couldn’t. We did, though, manage with a minimum effort.  Still, my day wasn’t over.

Tuesday, the tenant in another rental called to report the toilet tank needed to be reworked.  He questioned, “Do you want to rebuild the inside with new parts, or with a crack in the bowl do you want to replace the whole thing.  Mason, my tenant, would do either task after he got home from work.  I opted to replace the whole thing, picking up a new commode at Home Depot (along with some new faucet handles for my deep sink) sometime on Thursday. How simple is that? Help from the store could load it into my pickup and Mason would unload.

“GET THIS TOILET FREE!” announced the sign at the beginning of the plumbing isle.  I found an associate and asked the secret for obtaining free merchandice (i.e. the toilet) still holding the handle of the flatbed I had rolled through the store for its purchase.   “It’s a water company rebate,” he explained reminding me that only certain toilets qualified for the promotion of $50.00 or $100.00 — depending on which water company provided the service — and only certain old toilets were eligible.  We began by examining all the features on the newest low-flow models.  “Do you have the correct measurement from the wall,” he asked.  “I don’t know,” I replied.  Shaking his head, he cautioned, “If you don’t a have a 12” space from the back wall to the bolt holes,  you can’t make the connection.”

Problems, problems, I thought.  Recalling how easy it had been when Ken and I shopped for toilets, I hadn’t realized I needed measurements.  We simply picked out a commode we liked at the right price, loaded our choice onto a flatbed and off we went.  I can’t count the number of toilets Ken has purchased and installed, nor do I remember if he measured for the 12” space, although he may have.  “I can’t answer that question,” I said, wishing my cell was in my pocket.  It wasn’t.  “I’ll be back,” I promised pushing the flatbed, which held the faucet handles I had picked up first, to the nearest check-out.

I drove to the rental, rang the bell and Tara opened the door surrounded by her little ones.  I explained my mission, and with my small pocket tape she stooped (even though she is very pregnant) and measured the distance from the wall to the bolt.  “Twelve inches,” she said.  “Good,” I replied, “Thank you.”

Back in business I waved to the children and drove again to Home Depot, glancing at the clock.  I needed to get home to help Criz with Ken, but there was time enough if all went well. After all, what’s the big deal about buying a new toilet?  My associate saw me coming dragging another flatbed.  Quickly, I made my selection.  After all it wasn’t a fashion statement.  “Let me see if this model is listed to qualify for the program,” said the associate, reminding me again that all styles didn’t.  Checking the computer, he then went to the phone, and then to the printer.  Returning minutes later with several sheets of paper he began to survey the qualifying numbers and brand names.  I checked the time and was tempted to say, “Forget the rebate,” but I didn’t.  The $50.00 was better in my pocket than in an account belonging to the water company, so I waited.  Besides, with water rates going up they would get their money back soon enough.  He studied the list and compared numbers.  Finally, he said, “Here it is,” pulling the box from stock and loading it onto the flatbed.  He handed me a paper with the numbers underlined.  “Take it to the contractor’s register at the end of the store and someone will load it for you.”  Feeling a bit relieved, time still on my side, I rolled the flatbed to the directed check out.

Of course, there was a long line even at 5:45 in the evening, but I was committed so I waited.  Finally, it was my turn. “I need someone to load this onto my truck,” I said to the cashier handing him a credit card.  “Just drive up to the door and you’ll have help,” he assured me.  I parked, climbed out of the driver’s seat  and hurried inside saying, “I’m here.”  Time was running out and I should be home.  Criz may forgive me for being late when he sees I’ve purchased new handles for the deep sink – the deep sink being an important part of Ken’s evening clean-up.

I sat in the pickup waiting.  It was hot and I was getting edgy as time slipped away.  Suddenly, I began feeling angry.  Why isn’t Ken here and why does he have to be sick?  If he were here we could load it together and be gone. Doesn’t he know how much I need him – how much I miss him – and besides, what about me?  Who am I anyway? I’m his wife, but I’m not a wife; feeling like a widow, but I’m not his widow either.   He’s here, but he’s gone.  Why did he desert me leaving me to fend for myself?  That’s how I felt – as if I had been abandoned – the way he felt last month when I wanted to go to the bank.  Here I was left alone, deserted, with no one to touch my shoulder and reassure me that everything was going to be all right.  No one can rescue me and it’s never going to be all right.  I felt my eyes begin to puddle.

Finally, I spotted my desperately needed help as he appeared through the exit doors wheeling the flatbed toward the truck.  Quickly, he dropped the tailgate, and without a hitch the damn toilet was on board.  “Thank you,” I mumbled, holding back the gathering storm.  Inside the cab – with a small amount of privacy — I permitted a few tears to flow.  Not a lot and not for long, just enough to relieve the pressure behind the dam.  Besides, it’s not safe to drive and cry, and Criz is waiting.  One day they will flood out – my lake of tears — when I have the time, place and another frustrating reason to allow for such a luxury as a good, hard, sobbing cry.

At home I handed the faucet handles to Criz.  He smiled.  We had removed the originals a good while back because Ken, when no one accompanied him to the bathroom, always left the water running, at times flooding the floor.  Eventually, one handle became lost and Tuesday the second one fell behind the washer.  Opening the package we found that another customer had “taken” the screws. Tomorrow I will return the set to Home Depot, and buy another.  This time I’ll check to make sure all items are included.  The good part is I will be rested, the weather cooler, and after all is said and done I’ll be fine – until another unbearably hot day and another broken toilet.

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