This is an excerpt from a letter I wrote today:

My dad continues to get worse.  For a long time he seemed to stay about the same.  He was more active in the summer and a bit easier to deal with in the winter, but from year to year it seemed like he was stuck at a point where he could converse and do various activities, he just couldn’t remember very well and he occasionally did embarrassing things (like comment on how fat someone was within hearing distance).  But in the past two years there’s been a sharp decline to the point where now he hardly speaks.  He can read almost anything, but spontaneous speech is pretty much limited to a few lines.  (“Let’s go out the front door,” being the one that I hear the most often.)

My mom sends him to adult day-care twice a week.  They’re really good with him and it gives her a breather.  She really should have sent him more often when he was harder to deal with, but any break, even now, helps.  

He walks A LOT.  You can walk in a circle at my mom’s house through the kitchen, the dining room, and the living room then back to the kitchen.  Pretty much my dad just walks in that circle from the time he gets up to the time he goes to sleep.  A couple years ago he went through a phase where he ate everything in site (including food in front of other people and dog or cat treats that were left around).  He gained a lot of weight and went up several pant sizes.  Well now he’s lost all of that weight and is even thinner than my mom ever remembers him being.  Something about the dementia makes him agitated and he just walks and walks and walks.  If he sits down, it’s only for a few seconds and then he pops right back up again to walk around some more.

If you ask him a question, he’ll look at you for a few seconds, and then continue doing whatever he was doing before (most likely walking).  As recently as 6 or 8 months ago he was able to answer a question such as “Who am I?”  but not any more.

It’s difficult getting him to eat anything.  If cookies or candy are sitting out, he’ll grab something to eat and munch while he’s walking.  Lollipops are particularly favored, although he’ll chew the stick when the candy is gone, so you have to watch and remove the stick when he’s reached the end.  But getting him to sit down at a table and eat is very hard to do.  Often you have to hand him a plate of food and he’ll take a bite while walking.  Then he sets the plate down and you have to get it and hand it to him again on his next pass through.

But while he’s clearly getting “worse,” he’s also getting better in the sense that he’s easier to deal with.  Whereas before he’d ask questions almost non-stop, now he hardly talks and when he does it’s quieter and not insistent at all in the way that it used to be.  He’s pretty gentle and complacent (other than needing to walk like crazy).  

He’ll most likely eventually lose the ability to speak at all, even to read.  Sometimes he leans when he walks, so obviously something is taking place physically, but it’s hard to tell what’s going on when he can’t tell us anything.

The plan is to try to take care of him as long as we can on our own and only put him in a nursing home when it’s too hard to care for him.

The picture is of my dad after I picked him up from daycare where they had been celebrating Mardi Gras.

This past August marked the 6 year anniversary of our move to Colorado to help my mom cope with my dad who has Picks disease.  When we first moved, we assumed that we would be here two years, three at most.  We were told upon diagnosis that my father would most likely only live another 6 years from that point. (He was diagnosed in the spring of 2000. The disaster of Y2K came for us in the form of a disease rather than a coding glitch.)  But the 6th anniversary of his diagnosis has not only come and gone, but physically, my dad's health has remained quite strong.  He continues to be active, walking as much as 5 hours a day.

For several years, friends would ask how my dad was doing.  I'd shrug my shoulders and say, "He's about the same."  It was a disappointing answer to be sure -- disappointing on my end because, though things never got better, they never got worse either, meaning the end was still a long ways off; disappointing on my friends' end because I could tell by the tone of their voice that the lack of "events," tragic moments that I could cling to tearfully as signs of my dad's descent towards death, meant they were beginning to doubt if there really was anything wrong at all.  In fact, when my friends saw my dad, he looked not only fine, but quite healthy.  It wasn't until they talked to him that they might think him odd.  But it was only if they'd known him before the disease that they'd have a true sense of the change that had befallen him.  (For a taste of what it as like to spend a minute with him during that time, see my post, One Minute with Picks Disease.)

But this past year there has been a noticeable difference in my dad.  He does less (no more picking up coins in parking lots, moving pictures around on the walls, or doing dot-to-dots) and paces more (activity without productivity -- not that his previous actions were all that productive).  He nervously rubs his thumbnail across his pointer finger to the point where he's worn a groove in his finger.  He's confusing our names more often.  (He knows I'm Meg, but he doesn't seem to know what our relationship is.  And my mom has become his mom, even when his mother is in the room with them.) 

He's also, oddly enough, started to lean.  He doesn't always lean.  In fact, it only seems to happen a few times a week, most often when he's walking around my block.  But he'll round the bend and there it is, he's leaning to the left.  He doesn't seem to notice.  And after awhile he straightens back out.

And he's becoming increasingly silent, entering into the aphasia stage of the disease.  Some people with Picks hit this stage straight out, losing their ability to speak before they even begin to lose memory or ability to reason. But for my dad it's been gradual, sneaking upon us so stealthily, that when it finally dawned on us that he was losing language, he had already been reduced to about 500 words.  I don't know that he even understands most of what we say.  When asked a question, he will most often either ignore it, or nod his head and say "yes" before walking away.

Oddly enough, despite the fact that he's lost reason, memory and language, he has retained mechanical ability.  When I picked him up from day care yesterday, he was in the yard behind the building and the fence had a clip that kept the gate from opening.  There was another gate that wasn't locked, so I directed my dad toward it, but while I was busily gesturing and explaining, he walked right over to the closest gate and figured out how to undo the clip that was locking the latch.  He walked out without a word and headed straight to my car.  Before slipping into the passenger's side seat he muttered vaguely, "Let's go shopping, Meg," one of his few remaining phrases.