Tuesday, July 10, 2012

What A Care Giver Really Wants

1. Sleep.
       I don’t know what the odds are of having two parents suffering with massive memory loss at the same time. What I do know is that the stress of helping one parent with Alzheimer’s, going on ten years now with Mom, has not just doubled because my father more recently joined her. An inexplicable mathematical leap occurred. It has squared and I know this because I am exponentially so tired it could be written in scientific notation.  I choose to be here so it’s not a rant, but a warning to line up help before you get to this point. 
     I stumbled into a coffee shop this morning to OD on French Roast so I could go hiking in my few hours off. Now there’s a clue care-giving takes a toll, when you must have caffeine to exercise. The girl behind the counter was curt and a little nervous. When I stepped into the restroom I laughed out loud. High on the list of shit caregivers do wrong is neglecting themselves for others. I had taken a late shower and gone to bed with my hair wet. Between falling onto my bed for a few hours of sleep and waking early to another diarrhea mess I had not looked in a mirror or combed my hair. What a whack job. I couldn’t have created a lopsided jet wash duck-tail if I tried. My bent sunglasses sat sideways on my nose and a curly red spaghetti noodle stain graced my T-shirt. In the overall picture that actually looked planned. I smoothed my hair down with water and checked my teeth. 
     Chances are I won’t look presentable again until I lock myself in a motel room and sleep for a month. The woman in the mirror looked astonishingly sad. If I’m depressed I’m too tired to feel it. I walked out of the can to renewed barista glares and instinctively double checked my fly. Right, I probably shouldn’t have laughed quite so loud alone in the tiny bathroom then sauntered out looking like I bathed in the sink. Fortunately there are so many coffee shops in this area I will be able to frighten scads of superior teenagers before risking a repeat performance. 

2. Absolutely no drama.
       It’s probably necessary to inform friends that your undivided attention will go walk about, although that would require believing skinny old Alzheimer’s folks could actually knock the snot out of you in the first place. I sailed through a hurricane on a small boat and would never have imagined that care-giving on this level would be more exhausting. Friends with unfettered lives will ask questions that you cannot possibly answer. They will be loaded with emotion, require a response, desire a connection and you will search your soul and find salad in a sock drawer, a used diaper under a pillow, dirty dishes returned to the cupboards, a naked old man standing in the kitchen unaware he is taking a crap while scrubbing his wife’s dentures with a floor brush*…you get the point. Your best friends will be the ones who don’t make any effort to spend time with you. And another thing, you really don’t want to know what your ass is going to look like when you are ninety.   
My sincere apologies to friends I am neglecting. I’m also weeks behind on a graphic design project that should have gone to press already. 

*This was also a touching moment because Dad still cares so deeply for Mom that he remembered to clean her dentures.

3. More time.
      A friend sent me a book about care-giving called “The 36 Hour Day” (thank you Larry!) I’ve skimmed through it, but haven’t had time to read it. The title speaks volumes. I still don’t sufficiently understand why this makes me feel like there is a drain in my soul, a dripping faucet in my brain and a fire hose blasting my heart. The statistics for caregivers are alarming at best. Life expectancy is reduced. Many die before the people they care for. I do know from experience that Alzheimer’s patients, and please forgive me for not knowing the correct medical term, are brain leeches. You will have to do all their thinking for them, direct their moves, tell them where they are and answer the same tedious questions a million times without ever letting a tiny hint of annoyance creep into your voice. Otherwise they will call you names, even bite you, and still you must be psycho nice or put up with tantrums so vile that you would choose to run through town naked in a diaper before experiencing it again. And you will have to interrupt what they are doing, after the shock wears off, to remind them they not only forgot to get dressed but they happen to be taking a crap in the kitchen. All this gives you little time for your own thoughts. You know, waking up slowly and deciding what would go good with your coffee. You will more likely wonder if there are foods you can eat while taking a shower just to save time. 

4. A long term care insurance policy that does not require skills equivalent to snake charming and pushing a large rock uphill. Or I could just drive to Colorado and drop my parents off at corporate headquarters for the day. That would be infinitely clearer than the correct number of checked boxes on cryptic forms that are often mysteriously lost in the faxing process. If you think people with dementia are hard to get answers from, just wait until you’re dealing with their insurance company. But no worries, by then you will have your fake nice voice down pat when you hear, “That fax hasn’t come across my desk”, yet again.
5-10. Chocolate.

1 comment:

  1. I loved that when you called today, you tried to give me a birthday present of not talking about how your day was going. What you are doing is so incredibly loving, and how you are writing about it - both small details and big picture is pretty awesome, too. We've got to figure out something for you to do when this is over. Something that will not require you to use that 'nice voice' for ANYONE.