The signs continued to pile up all around us, but we stubbornly refused to see them. Things were constantly turning out to be "broken" - the TV remote, the can opener, the lock on the front door. My husband or I would try to "fix" them, but of course there was nothing to fix; the only thing that was broken was her mind. Later we discovered that this is a common pattern: complaining that something is broken is much easier than admitting that you can no longer operate it.

I got her settled on her bed in the room we shared, reminded her that we'd all be at the other unit while she napped, and left her alone. An hour later, a stranger happened to see her wandering around the parking lot, completely disoriented and desperately trying to find us. That was the first time I had actually seen her panic, and I didn't react well. "Mom," I scolded, "I told you where we'd be! You had just been over there an hour earlier! There's no need to be upset!"   How I wish I had been more understanding ... perhaps I would have been, if I had known then what I know now:  it was the disease in her brain that was the culprit, not her. She wasn't trying to be difficult; she simply couldn't help it.  She was agitated the rest of the day, and my sister-in-law elected to stay with her that evening while the rest of us attended the rehearsal dinner. Before leaving for the dinner, I laid out her nightgown and slippers on her bed. My sister-in-law reported when we returned that night that Mom hadn't known whose they were, or which toothbrush to use (hers and mine were both laid out in our bathroom), and needed help getting undressed. She seemed OK the next morning, and we had no more major incidents the rest of the visit.  She thoroughly enjoyed all the festivities, and seemed to feel fine through it all. But for me, the entire trip was a series of revelations.

As her mental capacity continued to drop,  we were faced with constantly changing circumstances. She became less able to prepare adequate meals for herself. Her clothing and appearance were declining. Her villa became cluttered and disorganized. Junk mail and magazines were piled on the dining room table along with letters, bank statements, and bills, because she was not able to differentiate between them. She was confused about the simplest details of time and place, and could no longer understand or comprehend a calendar. She would make repetitive telephone calls to family and friends for clarification and reassurance. She was stockpiling Ziplock bags and Kleenex. She was wearing the same clothes every day. She was running the washing machine with only 3 items in it, was having odd conversations with friends and neighbors, was unable to order a meal in a restaurant. We still didn't get it.  But I think she knew, and she was afraid.

Refusing to consider Assisted Living, doggedly insisting that she would do fine in an apartment, we moved her from the villa where she'd lived for more than 20 years to an apartment in the main building. We had high hopes that the move would resolve our concerns about driving (she no longer had a license and no longer needed a car) and about eating (she had a small kitchen, but ate almost all of her meals in the main dining room), yet still provide her the independent lifestyle that she was so afraid of losing. However, we soon learned another valuable lesson about dementia patients: their ability to perform ADLs (Activities of Daily Living) becomes severely weakened when they are placed in unfamiliar surroundings. We had taken great pains to furnish and equip her new apartment with as many familiar items as possible. However, her routine had been interrupted, her environment changed, and her functioning capacity dropped significantly as a result. I had thought that she would adjust to the new routine, that she would regain some of her capacity, but I quickly realized that this was not going to happen. Prior to the move, she had been doing her own laundry, using her kitchen appliances, watching television. Now, she couldn't remember her apartment number, couldn't make sense of the buttons in the elevator, couldn't figure out how to get her mail from a post box in the corridor. She would frequently get lost in the building, a place that had been familiar to her for 20 years. Although she had asked repeatedly about having a washer and dryer, she couldn't grasp the concept of the laundry facility being located down the hall.  She didn't understand about putting her dirty clothes in a laundry hamper in the bathroom, even though we placed a sign on it to remind her. We would often find that she had washed out her underwear in the sink and hung it around the apartment to dry. She couldn't operate her telephone answering machine, the same one she'd been using for years. She couldn't turn on the television. She couldn't make toast, or reheat leftovers, or even make a cup of tea. She was lost, and losing more of herself every day.

I reacted badly. I became a memory Nazi, trying to pound information into her damaged brain, testing her over and over in a futile attempt to get her to remember the myriad of new numbers and instructions and routines. She would try, but simply couldn't process it all, let alone retain it. I broke every rule of communicating with someone with memory loss: I insisted that she learn, I explained and reasoned and corrected and scolded, and all I was doing was frustrating us both. I stubbornly refused to believe what was right under my nose, what the doctors and the staff had tried to tell me: she can't live alone any more. In hindsight, it seems very clear:  we had moved her from a familiar setting to an unfamiliar one, and then were surprised when she couldn't function. What were we thinking?

 For purposes of this newsletter, this story ends here....but in reality it continued for many years.  Mom did move to Assisted Living only two months later, and did much better than any of us had expected.  After a year and a half in AL, her increasing memory loss necessitated a move to a dementia unit, where she remained for over five years until her death this past March.  It was a difficult, heartbreaking, and yet strangely fulfilling journey, and if I had to select one word to to describe it, it would be Understanding.  We experienced Understanding in several different ways:  refusing to understand, trying to understand, learning to understand, and ultimately coming to understand.  We wasted too much time with the first two; the last one was the much better place to be.  If you are a caregiver, get there as soon as you can. 

Things will be much easier when you do. 

 - M.D.