"All that is gold does not glitter, not all those who wander are lost; the old that is strong does not wither, deep roots are not reached by the frost."

Saturday, July 31, 2010


Picture pulling your car out of the garage in the morning, that's right...click on your seatbelt, adjust your mirrors, and set the radio to NPR. You're looking good and feeling refreshed with the knowledge that the day is new with no mistakes in it. You-are-ready-to-roll but, no. The unmistakable sound of grinding gears fills your ears and you suddenly sense you cannot shift out of reverse. That's it...take a deep breath and start the self-talk. This is hard, but I'm doing okay. Give us a smile and wave hello to the neighbor out watering his lawn, go on your way as if nothing is wrong, even though today, it's clear, you'll be driving to town backwards.

I am lately a hazard. My friends worry about me and leave warm, supportive messages on my voicemail. I don't make plans. I carry my cellphone around like oxygen and jump when it rings. My doctor says I need exercise. My cholesterol is high. I am addicted to the Food Network and shoot up Cupcake Wars and Ace of Cakes when I should be sleeping. I cry because there's dirt under my refrigerator. My husband surely wonders why he married me. My son keeps his distance. My brother thinks I'm ridiculous.

I am on a road trip. I don't like it because I'm awful tired of driving. My dad was forced to hand over his keys five years ago, so he's in the passenger seat. AD wants to ride shotgun and pouts in the backseat; he's a thief and so we hate him and give him the silent treatment. This particular journey has its own set of directions, the map is worthless, and there's only one exit. The overall view doesn't change - same old signs, worn out towns, major construction delays, ugly accidents, bad food, and ridiculous radio reception.

What's it called when you get lost in a state of grief, but no one has actually died? There must be a word which loosely defined means something is seriously backwards. People on the street see me driving in reverse and scratch their heads while thinking What is wrong with her? There are some who shout out directions and driving tips. Pull over. Get out of the car. You're going the wrong way.

My father is back in Hospice with ESC - End.Stage.Cardiac. Huh. It won't be Alzheimer's Disease that is the end afterall. 16 years ago, a pacemaker was installed in his heart and the battery needs charging. He won't be seeing a mechanic. There's just no way. He's hanging in there as all solidly built engines do, but you can tell he's petering out and riding on the fumes. He slows down by midday, way down, and his color goes gray. I park him carefully in his recliner and speak softly. He needs wax. The nurse says it's day to day, but could take months. Again, with the shitty itinerary.

Clearly the end is in sight, and dear God, I am grateful for it. I say goodbye to my father every day as if maybe it's his last, though I suspect it is not. There's a few more miles to go but, still, my eyes are peeled - looking for an oasis. We could both use a clean, well-lit place to stop. It's up the road apiece and we can't miss it; there's only one exit.

Tuesday, July 6, 2010


Last month, I moved my dad into a new room at Bickford. I knew it was going to be hard on him, but I could not face a whole summer of visits in his old one. When he was first admitted to the memory care unit, I did not take time to carefully choose where he would be living because, frankly, I did not think he would be living much longer. I had not noticed how small and boxy it was or that he could not look out the window. The head of his bed was actually jammed up next to the bathroom door which was starting to disgust me. The guy next door was nearly deaf, constantly raised his voice, and blasted his television set. All these things of little consequence were grating on my nerves.

His new room is bigger with a little hallway where the bathroom is. You can sit in a chair or on the bed and not view the toilet. The warmth of the sun pours over my dad, and he can roll his wheelchair up to the window and look out at a tree. A corner hugs his bed where there is actually room for a matching nightstand and a new little lamp. He's at the end of the corridor, so no more drone of the neighbor's TV.

I worried about the switch for two weeks and still question my motives. Nothing about the old room bothered HIM, but everything about it bugged ME. I pretty much knew he would not, could not, handle the move without suffering greatly. His brain is a raisin and his one solace, knowing his way around the tiny community where he exists, was about to be extinguished. Like an amateur magician yanking the tablecloth set with china and crystal, I attempted a feat fraught with disaster. I thought of the old Helen Keller riddle. Question: How did Helen Keller's parents punish her? Answer: They rearranged the furniture.

My father now turns right instead of left when he wheels out of his room and left not right when using the loo. The dining room is on the other side of his world and his diplomas and war medals hang on different walls. He does not recognize his belongings in their new light, so, in an attempt to gain his own sense of control over the space, he has taken to bizarre methods of rearranging his dresser drawers and closet. His DVDs and books get turned upside down and scrambled every which way, puzzles are mixed in with socks and slippers, pictures of my mother lay all akimbo, cloth napkins are snatched from the dinner table and squirrelled between empty eyeglass cases and shaving creme. On occasion, he wheels his way down to the old room and scolds the poor gentle woman who now occupies it.

For my penitence, for being selfish and controlling and seeking perfection in an imperfect world - for stealing home - I spent five days in a row, twelve hours a day, with my dad at Bickford. I was his constant, the quintessential Welcome Wagon when he awoke, his human GPS at every turn, the hovering helicopter, the Stepford daughter, the freak. I kept asking this beloved and bothered old man, who could not figure out why he was not where he was supposed to be, the same stupid questions: Isn't this better, Dad? Do you want to look out the window? Don't you love your new room? Translation: Aren't you glad I got you what I needed?

Caring for my dad is like constantly visiting someone in the hospital. It's awkward and uncomfortable; everything feels closed-in and out of sync. Conversation is forced and you're grateful if there's a window you can look out and see a tree. Mostly, you just want to get back in your car and leave. When I wasn't there - by his side during the transition - the CNAs told me my father would sit in his lovely new room and cry. This only lasted a few days, but it wasn't happy news, and I figured it would happen. Stealing home is a gutsy move.