Stage One 

ANNOYANCE

My mother is 87 years old. She was widowed for the third time when my stepfather died in 2000 after spending five years in health care with Parkinson's. A very social, capable person, Mom lived alone in the villa at the continuing care retirement community where she and my stepfather had moved in 1984. She continued to cook her meals, drive her car, go to church, attend her book club, visit her friends, travel to see her children. She lived a busy, full life. She had friends in for tea almost every afternoon; her love of afternoon tea was apparent throughout her home, as evidenced by her growing collection of teas, cups, and teapots. Many, many residents and staff of that community have been to tea in my mother's home over the years.  It was what she did.

At first, we thought that her memory lapses were the usual ones:   lost items, forgotten names, overlooked mail, mixed-up dates...just like we all find ourselves doing occasionally.   But this was more than occasional. People always ask me, "How long has your mother had Alzheimer's?"   Who knows? Who can pinpoint a time when it began?   Our "aha" moment came when she started calling the bank several times a week to see what her checkbook balance was. This from a woman who had excellent banking and accounting skills, kept up with her taxes each year, and prided herself on balancing her checkbook to the penny each month. Not realizing what was going on in her mind, I would admonish her that she was wasting her time as well as the bank's. She would agree, but then would call again a day or so later. Then her checkwriting skills began to deteriorate. She would sign on the wrong line, or mess up the numbers or the payee name. She would pay the same bill twice. She renewed magazine subscriptions again and again. She began sending in checks to every solicitation or charity request that came down the pike. She would forget that she'd already sent a grandchild's birthday check, and would send another. It seems strange, looking back, that we didn't see these signs and recognize them for what they were, but when you're not looking for them, you don't always see them. Silly us, we even gave her a shiny new electric calculator for Christmas that year to "make it easier to maintain your checkbook."   We were surprised and disappointed that she didn't use it. Of course, we didn't know then that her ability to learn new things had already been severely affected. 

At first, since she was having difficulty with the actual writing, I offered to write her checks for her. She would put all her bills in a box, and once or twice a month we'd sit down together and pay them. But she would go back later and pay something again, or make a mess of writing her weekly check to the hairdresser, and we'd be back where we started. She began asking my husband Tom (she's of the generation that thinks men are smarter than women about things like finances) to help her balance her account each month, and that's when we discovered how bad things had gotten. Her checkbook register, which she had always kept meticulously, was a mess of markouts and red pencil notes. And her arithmetic, always accurate before, was a disaster. It took us months to straighten it out, during which it became increasingly apparent that we needed to take it all over. Happily, she already had in place the legal documents that allowed us to do this, and my name was already listed on her bank accounts. Explaining it, however, was a bit tough. We ended up taking the coward's way out....rather than engaging in an up front, face-to-face discussion with her about why we needed to take things over, we just quietly kept the checkbook at our house, paid her bills, and allowed her to gradually and, we hoped, painlessly relinquish this responsibility. In only a few months, she went from saying "Why don't I have my checkbook?" to saying "I am so glad you're taking care of my checkbook. I don't think I could do it any more."

This back-door method of effecting changes in Mom's life became our SOP. We found it much preferable to confronting an issue head-on, which always resulted in us trying to answer difficult questions, i.e., "Why can't I go to the doctor's office by myself?" or "Why can't I drive to the store?" There's no easy answer to those questions, and besides, they always involved lengthy explanations, which (as we later learned) generally cause more confusion in people with memory loss.  We quickly discovered that she responded well to alternate plans if we made them sound like fun. So when she'd tell me she was going to the store, I'd say, "I need to go to the store too. If you'll wait until this afternoon, we can go together, and then stop for a milkshake on the way back." Pretty soon she was deliberately waiting to run her errands until I could go with her, and of course I always drove.  The result of this was that she gradually became more comfortable with someone else doing the driving. We didn't realize until several years later that, by sidestepping some of these issues, we were already beginning to change the way we communicated with her, already beginning to adopt some of the techniques we would learn to make things go more smoothly. Changing the way in which you communicate, as it turns out, is vital to dealing with dementia patients - and the sooner you get started, the better.

So the result of our back-door approach, at least on driving and maintaining the checkbook, was working out pretty well. We figured that was all there was to it. We didn't know yet that anything was actually wrong, so we didn't know we were supposed to do anything different. She appeared to be her usual self, to maintain her usual routine, so our expectations of her were the same as they had always been. We would be surprised - and yes, annoyed -- when she started doing odd things, like bringing the wrong dish to Thanksgiving dinner ("Mom, you were supposed to bring pecan pie, why did you bring this?"). We'd speak sharply when she wouldn't remember details ("Mom, that's not for another two weeks, stop worrying about it!"). We'd criticize when she'd wear the wrong clothes ("Mom, why are you wearing that again?").   We'd fuss when she'd telephone too often ("Mom, you've already called us three times this morning!"). We peppered our conversations with "don't you remember?" and "we already told you" and "why did you do that?" and each time we'd say them we were striking a blow, knocking her back, reminding her that she was losing it.   Now that I know, now that I understand, I would like very much to take them back.

It was beginning to dawn on us that maybe Mom wasn't quite the same as she had been, but we'd just laugh it off or shake our heads and not give it much thought. What else could we do?  We had a long way to go.  

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