Monday, October 31, 2011

Word(s)

I am someone who loves to talk, ask any of my friends and they will confirm this about me. I know that I inherited this trait from Miss Cathy, unlike my brother who is what I would call a ‘minimalist’ where conversation is concerned. My mother loves to talk and I grew up ‘loving’ to listen. There wasn’t a topic that was taboo; sex, politics, sexism, racism, feminism, growing up poor in the south and the world at large. There was little she didn’t have a strong opinion about and wasn’t afraid to express it.

I remember I would always volunteer to help her with the Sunday dinner, because I knew that it meant hours of uninterrupted entertainment. I was her eager sous chef, pressing an old jelly jar into dough to help make biscuits along with some other minor duties as she spun tales.

Nowadays things have changed and talking with Miss Cathy is not the same. Of course I’m not a child anymore and I’m no longer eager to learn about life through my mother’s stories. I’ve long since ventured out into the world and now have my own tales to tell.

Not that she’s any less entertaining or as insightful as she always was-she is, it’s just that since her diagnosis there has been a noticeable change in the rhythm and/or the course of her conversations.

I’ve noticed that over the past few months that each time you talk with her you don’t know if or when the conversation will go from the norm to a game of “what’s ‘that’ word I’m looking for?”

It doesn’t really matter what she’s talking about, usually she's trying to get me interested in the latest bit of gossip about a relative of unknown origin (not that she doesn’t know who they are-believe me she does, it’s just that the bloodlines are sometimes so convoluted that I stop listening, hence the title) and I’m about as interested in the conversation as a four year old is in Nuclear Arms dismantlement.

But, you can’t ‘not’ listen, and somehow you get sucked in and just when I’m about to find out why Aunt Whoitz and Aunt Whatitz hate each other (this week) suddenly, without warning Miss Cathy would stop interrupt her own story and say, “Shoot, what’s that word I wanted to say?”

While she looks around the room as if the word is hiding behind a chair I start ‘free associating’, saying anything that comes to my mind, “uhh,.. move, blow my brains out, slap myself unconscious, move”

“No, no,” she’d say, “that’s not it. Darn, what was I talking about? Oh yes, now what was I trying to say?”

And so it goes, if she didn’t find her “word” we’d either move on to another topic (meaning another relative) or that would be my cue to escape to my room. Sometimes she’d actually find the word, sometimes in the moment and sometimes in the middle of another story.

Oftentimes though, the word is just…gone and her reaction is usually frustration and anger. I’ve found that her emotional reaction varies depending on her overall mood or the time of day. She’s not a “Sundowner”, a person with Alzheimer’s whose symptoms seem to deteriorate as day turns to night. No, it just seems to me that if she “loses” a word in the evening she’s more apt to be more upset because it’s the end of the day and she’s already tired.

Her stories may not fascinate me as they once did, but I still try to listen, even though I‘ve heard most of them more times than I care to remember but now that I think of it that could be a good thing because as she loses a word here or there I’m more apt to be able to pick it up and give it back to her.

So, her words may not be lost after all, she’s just didn’t realize that she gave them to me.

Monday, October 24, 2011

Ahh-choo

I was sick with a cold most of last week and have just come back to the land of the living.

At the first sign of my cold Miss Cathy started to hover, trying to mother me but I shoo-ed her away with my best, “It’s only a cold”, telling her that I’d be fine once it’d run it’s course. After all, it was only just a cold. I’m lucky that I’m in reasonable health and not plagued by the usual maladies, aches and pains that a lot of my contemporaries have.
After all, I'm fifty-two and that is an age where the body starts to betray us if we're not careful.

I’m used to living alone and this was the first time in a lonnnng time that someone has been around to witness every sniffle and see the trail of discarded, crumpled, pieces of toilet paper that I use to blow my nose and leave wadded up in my room on tabletops, the bed, the desk or any other surface I happen to be near at the time, stopping to picks them up much later when they look like faded, white flowers littering my bedroom.

Disgusting I know but that’s ‘single person’ behavior-when you live alone (no matter how fastidious, neat and tidy one might be otherwise) a cold is when (for me anyway) my inner “Oscar Madison” comes out (the slob half of Neil Simon’s “The Odd Couple”).

I don’t think I’d been sick around my mother since I was a teenager so I’d forgotten how she behaves. In the last year I’d grown accustomed to my role of taking care of her so it was odd to be in a position where she was back in her role as caregiver to me.

Don’t get me wrong, there’s nothing wrong with having Miss Cathy take care of me, what adult doesn’t like to return to childhood (if only for a moment) and be doted on by a parent, taking you back to the days when you didn’t have a care in the world and you knew because you were sick that whatever you wanted only had to be asked for.

But, life as I know it is now is focused on me taking care of her and (hopefully) making her days as carefree as possible.

Besides, what was okay at six or even sixteen isn’t as easy to accept on this side of life, that awkward age when at fifty-two you’re no longer middle aged (how many one hundred and four year olds do you know?) and you’re not quite “old” –yet, and your seventy three year old mother is futzing with your pillows and insisting that you eat and drink when all you want to do is curl up into a ball and die (in between blowing your brains out into toilet paper).

Add to that Miss Cathy bringing me concoctions like hot tea with orange juice. After I took a few sips of the god awful brew I asked her what was in the tea and she replied, “I didn’t have any lemons so I added the orange juice because you know, orange juice is good for you when you have a cold.”

Ye, I agree. But not together-hot!

Then there were the times that she woke me up-just to make sure that I was sleeping (as apposed too?….I know I’m her baby boy and everything but the possibility of me being a victim of SIDS is long past.)

And there was the trepidation I’d feel whenever she’d come into my room with a tray carrying a bowl of “Chicken soup”. I could never be quite sure what she may have added to the broth-it’s not like I was expecting dead rat over rice under the cloche like in “What ever happened to Baby Jane?” but still, there were some questionable ingredients in her soups-like whole cloves of garlic (to open up my sinuses or to ward off vampires I guess) and in the same bowl there might be noodles and rice-starch much?!

But, I drank her tea (or as much as I could stomach) and I ate the food that she brought me because I could see that she was enjoying the role-reversal-and believe me without her help I probably would have been sicker a lot longer. I think she felt good to be back in charge and not the person waiting for their pills, meals or to be helped in the bathroom.

For a few days she got to be who she used to be for me; my protector, provider and confidant and I gotta say, that was worth a few sniffles.

Monday, October 17, 2011

Out with the old-in with the (not quite) new

One day I found myself standing in the small appliance aisle at Target shopping for an electric can-opener. We needed a new one (again) because Miss Cathy had gone through two since I’d moved in-not mention the two hand-held can-openers she’d also broken.

The latest malfunction occurred when she tried to open a can with a flip top lid. I was in my room working when I heard a horrific noise (it sounded like a couple of drunken cats singing through auto-tune). At first I ignored it but couldn’t the second time and went into the kitchen to investigate.

When I entered the room there she was, standing with the mutilated (and unopened) can in one hand and a perplexed expression on her face. I took the can from her, pulled the flip top lid and poured the contents into the waiting saucepan on the stove top.

“You can’t try to open cans with the electric can opener that already have a flip top,” I explained to her. “See, it’s even got a graphic on the top of the can. It’s a drawing of an opener inside a red circle with a line drawn through it to tell you not to use a can opener.””

“Oh, is that what that is” she said unfazed, stirring the sauce with a wood spoon,” I couldn’t tell what the was without my reading glasses on.”

“Well, that’s it for this can-opener.” I said as I unplugged it and threw it in the garbage can before going back to work in my room.

So, that’s how I came to be standing in this century’s version of “Woolworth’s” about to pay another $25.00 for a small kitchen appliance that had about as much chance of seeing in the New Year as an open bottle of good champagne.

Then suddenly, out of nowhere, I found myself putting the Hamilton Beach product back on the shelf, leaving the store and driving to one of the second-hand stores that I scavenge for the occasional mid-century piece of furniture or object d’art.

It’d dawned on me standing at the register in Target that I’d spent about $75.00 on electric can openers since I’d moved here over a year ago (and I’d yet to replace the skillets and saucepans that Miss Cathy had decimated-usually by forgetting that the burner was on high and walking away, scorching the pan-not to mention burning whatever was in it. And there was the ruined Teflon surfaces that she’d scratched up using silverware or other metal to stir or turn the food in the pans).

I’d realized that it was getting pretty expensive to replace things around the apartment and if I’m here for the marathon I’d have to pace myself financially to go the distance.
The appliances, the cookware…. the telephone, it was all just more collateral damage of the disease.

That day in Target I’d come to realize that places like the Goodwill, Valu Village and other second-hand stores are gold mines for the things that I needed as well as the fun things that I wanted.

Why pay retail for things you know your loved one with dementia are going to break (eventually-but not intentionally) when there is a low-cost alternative for those with a discerning eye.

Of course one would have to be very selective about the things they bought but I’ve gotta say, a lot of the second-hand stores have merchandise that’s in very good condition and some even have brand new items from stores that are over-stock that they sell at a greatly reduced price.

I suggest finding second-hand and thrift stores in/around or near upscale neighborhoods (their cast-offs are usually always of a higher quality than those of people on lower-income brackets).

For example, instead of paying $20 to $35 dollars for a new can opener I bought one (that had been “gently used”) for $6.00 (and it was a Hamilton Beach appliance) and it works great. I got the same bargains for the cookware, too. I paid $5 and $10 dollars for pans that would easily cost $50.00 or more at Macy’s.

The way I see it, Miss Cathy still deserves the best-I’m just giving her the best that someone else had purchased first.

So now she can break and burn with abandon (because we all know it’s just a matter of time before it happens again) and the can-opener’s days are numbered but I don’t have to worry about counting because I know where to get a quality back up cheap.

Monday, October 10, 2011

Playing the Alz card

C’mon, you caregiver’s know what I’m talking about. You know you’ve benefited from your situation and at times taken advantage; need to move to the head of the line at Starbucks and you’re running late (so you oh so casually (and humbly) mention to the person(s) in front of you that you’re in a rush and you’re on an errand for a parent with Alzheimer’s) and see how fast you get your double mocha, half caf, latte.

Or, you’re at work and want to leave early (there’s a pair of sling backs you’ve had your eye on and today’s the start of the sale at DSW) but instead you tell your boss that you need to get to CVS to talk to the pharmacist about a dementia prescription mix-up and before you can say Jimmy Choo -off you goo.

Want to get out of ‘finally’ meeting a facebook friend ‘face to face’ (because it’s only a cyber based relationship for you but the other person doesn’t know that), simply IM them that you’re so busy trying to find your wandering parent that your ’friend’ will understand and you’ll be able to get back to your faux-friendship online without worry of testing it’s authenticity ‘in the real world’.

Careful though, over-use of this “get out of jail free card” can lead to having your Alz card invalidated-play it one time too many (especially with the same person(s) and you’ll know the card’s expired when you get an eye-roll instead of what you want.


For me, it started innocently enough; I needed something (the who, what, where doesn’t really matter) and as I told whomever what I needed I ‘mentioned’ that my mom “has Alzheimer’s” and just like that-I got what I wanted.

I instantly felt guilty (not so guilty that I gave back whatever it was that I’d gained). So, I vowed to not do that again-until the next time it happened and now it seems that sometimes there’s been a conscious shift in how I bring up my mother’s condition and when I make the disclosure-God, can I be that shallow?

Who uses their loved one for personal gain? Well, celebrities and politicians to name just two but I'm neither, so I’m going to need a hand here-nod to yourself if you know what I’m talking about.

Now, don’t get me wrong, I’ve never played it to get out of a traffic ticket or anything. Although (in full disclosure there was an incident more than a year ago that shouldn’t count.)

I wasn’t playing the Alz card so much as having a mini-breakdown:

About eighteen months ago a policeman pulled me over on a dark country road in rural Virginia. I was driving back to my brother’s house where I was staying while I tended to Miss Cathy for fourteen hours a day while she was in her first rehabilitation facility for a month after her fall and dementia diagnosis.

I remember thinking that I just needed to nap for a few hours, shower and get back to her when I saw the lights in my rearview mirror. I was so out of it emotionally I had no idea why he’d pulled me over but I knew it wasn’t to welcome me to Bum-fuck Virginnie.

After I rolled down the window and gave him my best Sidney Poitier (non -threatening Black man) smile and greeting he asked for my license and registration. The officer then told me that I’d been driving 28 miles over the posted speed limit.

Yikes! I thought as I non-threateningly gave him my license. I rummaged around in the glove compartment to discover (to my horror) I couldn’t find the registration (I was driving my mothers car).

He took my license, told me to stay in the car (gladly) and I watched in my side-view mirror as he walked back to his squad car and did whatever it is that police do in there. After what felt like an eternity he sidled back up to my window, shined his flashlight into the car and then into my face. It was very uncomfortable sitting there with the light shining in my face, he disappeared somewhere behind the glow of his flashlight. My eyes tried to adjust and all I could hear was his voice asking me,” Where I was coming from at this hour?” And, “Where was I going in such a hurry?”

That’s when (to my horror and his (and my) surprise) I looked into the light and burst into tears. I found myself (like an actor under a spotlight on a stage delivering a soliloquy) the entire story of my mother’s fall, her discovery after three days, the drama of the police having to break down the door-all of it, I didn’t leave out a single detail. My monologue ended with her diagnosis and (at the time) unknown prognosis from the doctors about her future and her stay at the rehab where I’d just come from.

Completely spent, I blubbered out the last of my story and was able to see the policeman’s face because he had turned off the flashlight at some point during my narrative.

“I’m real sorry to hear all that,” he said, “Sounds like you need some sleep buddy. You need to slow down, get home and rest up if you expect to be of any help to your mom. My dad had Alzheimer’s so I know how you feel, he got so bad that he had to move in with my wife and me and we took care of him till he died.”

“Your mom’s real lucky to have you to take care of her. Now you slow down and get home safe.”

He handed me back my license and my dignity and with a tip of his hat he was back in his car and was gone. All I could do was sit there for a while (still sniveling) so that I could compose myself and absorb what had just happened. Did I just cry like Meryl Streep in “Sophie’s Choice” in front of a cop? And, did that cop just let me go-without so much as a warning ticket? No registration and more than twenty miles over the speed limit-in rural Virginia? I’m not saying it’s Selma in 1954 but still….I kept the windows rolled down to dry my tears. The shock of the policeman’s compassion filled the car along with the night air as I drove back to my brother’s house that night.

That experience stayed with me for a long time and I am grateful for that policeman’s kindness and understanding.

That wasn’t the Alz card so much as it was telling the truth and me benefited from another person’s compassion-besides, everything was so new then that I my life hadn’t been taken over by the disease (just yet).

And when I signed on to become my mother’s caregiver it’s not like the Alz card came in the mail with all the other Alzheimer’s and dementia pamphlets and brochures that I requested. I (we) didn’t ask for the privilege; nine times out of ten it just came to us innocently enough after someone saw, heard or learned about our care giving situation and treated us differently (like we were special for what we were doing) and from there on we realized a benefit from our new life situation beyond the sympathetic nods and empathetic gazes.

So, I’ve had my Alz card punched a time or three and I’m sure there’s plenty of room on it for a few more. But like any “card” that has it’s privileges; you have to be mindful of the responsibilities too and not abuse your position or the kindness of others who for whatever reason think we’re deserving of special treatment for doing something that we’ve chosen to do out of love and not for personal gain.

Monday, October 3, 2011

Doppelgang-ette

It’s been said that every one of us has an identical twin, a “doppelganger”, walking amongst us somewhere on the planet. Your replicant could be in the next town or in Abu Dhabi, looking like you, sounding like you and living exactly the way you do here and now.

Lately though I've been seeing a variation on the Doppelganger; women that don’t look exactly like my mother but they posses her essence and a lot of her physical characteristics-a “Doppelgang-ette” as it were.

And they are everywhere it seems, in the Malls, downtown, in restaurants, but mostly I see them when I’m in the grocery store. I see little old women wobbling along behind their carts as they push them through the aisles. I don’t know whether their gait is because of bad feet, arthritis, having walked a lifetime of working and caring for others or if (at this stage of life) it’s because of a knee replacement (or two), or from carrying a lifetime of extra weight and worry.

The way these women walk, rolling from side to side as they move forward, reminds me of a popular toy for toddlers that was advertised on television over and over when I was a kid. I see these women and I can’t help but hear part of the jingle in my head, “Weebels wobble but they don’t fall down”-only most of these wobblers need the same medical alert necklace that Miss Cathy wears (Help! I’ve fallen and I can’t get up!) Because unfortunately, unlike the toy- they will fall down.

It doesn’t matter their race or color, they all share the same “old” DNA, a penchant for loose comfortable dresses or elastic waisted pants of a non-porous material and makeup that has evolved from wanting attention in youth to commanding respect in their golden years.

I watch them as they make their way to the cashier to check out and some are pulling out their coupons (as I’ve learned to do) while others look worried as the register totals an amount that may exceed their budget for the week.

I applaud them being self sufficient, by necessity or design, because they are usually alone, no husband, friend or adult child to reach for something on a top shelf, or to bend waaaay down for something they need but have to decide if it’s worth the effort or not.

A little over a year ago Miss Cathy was one of them, wobbling along, up and down the aisles marking time and making do as her memory started to fail and daily life became harder and harder. I can only imagine how hard it must have been for her to shop; never knowing that when she returned home only to realize that she forgotten what she really went to the store to buy or came home to discover that she’d already purchased the same items just a few days before.

What must she have said to herself when she found that her world was getting smaller and smaller and that within the year she’d soon “choose” to stop driving long distances to visit her son in Virginia or travel to a casino for an afternoon of her beloved game of quarter slots and that the market a mere mile away would be about as far as she would venture from home.

I watch them; the doppelgang-ettes and I wonder, “Who is home waiting for them?” Do they have any maladies and if so, is someone there to care for them? As they drive away do they worry that this may be the day that they get into a car accident or forget the way home? And when they make it safely to their destination is there someone on that end to take in the heavy bags that the clerk wheeled out to her car and placed in the trunk for her?

I see these women and I see Miss Cathy.