FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Wednesday, December 11, 2013

Helpless Helping

I must supervise you every time you go to the bathroom. I always tell you to use the bathroom before we go out and I suggest you use it after an hour or two has gone by at home. I visually make sure that you pull down not only your pants but also your underpants. Lately you lower yourself with great uncertainty onto the toilet seat.

I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.

I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper.  Telling you to "Flush" doesn't register and confuses the process so I do it for you.

You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."

You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.

You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.

You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.

It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.

When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.

Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.

About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.

We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if  you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.

In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."

So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.

I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.

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