Senior moments: Part ll

Getting to the Bowie Senior Center proved to be a test of will and fortitude. The drive, less than fifteen minutes on the highway during non-rush hour should have been pleasant enough but I had Miss Cathy in the back seat remember-the killer of all times good.

It’s not that she’s intentionally an annoying companion on the road; I think that being confined in a space with her that’s about as big as my bedroom makes me feel claustrophobic.

Don’t get me wrong I love my car, a 2001 Burgundy PT Cruiser….it’s my lifeline and literally my “getaway” car. I also use it as a “living room” sometimes when I have something intimate or important to do like a private phone call or to write in my journal un-interrupted.

I mean, can you blame me, I’m with my mother seven days a week, twenty four hours a day unless I’m off working somewhere or shopping or heaven for fend I’m out doing something pleasurable for myself like being out on a date or relaxing with friends.

Of course I have plenty of outings and a lot that I do away from the condo, but I’m never gone for long because I don’t like to be away from her for more than five (or eight hours max) and that’s usually reserved for work and not play.

But the point is, I’m never alone..except for when I’m in my car….my PT, my four wheel “safe place”.

My car, I guess, has come to represent one of the few things that’s really “mine” and mine “alone” so I guess I’m hard pressed to share my space when it’s time to put on my chauffeur’s cap and become “Hoke”.

 Now that she’s riding in the back she’s given up (more or less) “back seat driving”-cue Alanis Morrisette. It seems that since she can’t see the oncoming traffic she can’t comment or react the way she used to when she was riding shotgun.

I got this little “tony-tip” from my brother and it definitely makes a difference. I’m less apt to daydream about steering the car into a ditch and walking into oncoming traffic as much (so that’s a good thing).

The problem now is that since she has so much room to stretch out in back she’s usually doing something; like emptying out the contents of her purse or snacking or building a bomb for all I know but the noise she creates is just about as irritating as her front seat car talk ever was.

Dick Cheney and Donald Rumsfeld could learn a thing or two about torture from this old woman. The constant sound of her digging through her purse makes the idea of water boarding sound like a facial.

 First of all it takes a full five minutes for her to get her seatbelt on. Every time she gets in the car (which in itself is very Cirque du Soleil) she attacks the seatbelt as if it were her adversary, pulling and twisting, all the while keeping up a constant stream of jibber-jabber and bracing herself as I put the car into gear and back out of the parking space.

I had turned on her favorite country music station, as usual, thinking that would lull her into a manageable state of inertia but the twangs and warbles of the Oakridge Boys or Shania were no match for whatever she was determined to find, deep in the bowels of her handbag.

Try as a I may to meditate and focus on something else-like driving (or finding a rock somewhere on the grounds of the center once we got there and beating myself to death) nothing could distract me from the rumbling and fumbling, like the constant drip of Chinese water torture, mind numbing and relentless, as repetitive as her constantly asking me what day of the week it is, all the way to our destination.

Senior moments: Part I

Recently I’ve been driving Miss Cathy around to a few of the senior centers in the area because she expressed some interest in what they had to offer. Of course she didn’t just come out and “say” she wanted to go. Mom’s way of “asking” was to tell me how her sister-in-law, my Aunt Dorothy, who I’m related to as a cousin on one side of the family and a nephew on the other (hey, country folk…..what can I say) really “enjoys” the senior center in North Carolina where she lives and all it has to offer.

After listening to her I read between the lines, the same way I do whenever she asks, “do you like Popeye’s chicken?” (she knows I don’t). But, that just means that “She” does and she wants me to go get her “two pieces and a biscuit”. So I interpreted her chatter about Dorothy the same way, as interest in a senior center and I was right.

Unfortunately, I had thrown out all my brochures and research in a moment of disgust after keeping them for more than a year “just in case she changed her mind” and wanted to avail herself of all that was available to her as a senior.

When I first moved here I collected everything I could get my hands on about “what to do with an old person”. Back then I was eager to please and enthusiastic to share my findings with her (suffice to say it’s an entirely different story these days) my enthusiasm has waned and what I find is mostly apathy.

Back then she told me in no uncertain terms that she had no interest in being in a room full of “old folks” as she called “them”…which led me to wonder who the hell she saw when she looked in the mirror every morning.

But, the times, like underwear, do need to change and it seems that now she was ready for something new.

I was giddy with the prospect of getting her out of the house (even if it was for just a few hours a week) but I was unprepared and not knowing how or where to begin. But, not to worry, after a few clicks on the all-knowing Google I found what I needed and we were off.

I decided to sidestep the quaint facility that was located in Miss Cathy’s solidly middle class neighborhood for another more affluent area. So, our first stop was the Bowie Senior Center less than 10 miles away.

Tom Wolff aptly named this group of moneyed movers and shakers in his native New York the Masters of the Universe so this would be their Washington DC equivalent. If you’re searching for a place to park an old person better there be BMW’s and Lexus’ in the parking lot and not Civics and Ford Focus’s. 

Casino...Royale..with cheese

Last week I took Miss Cathy to the new “Live Casino” that opened up about half hour away from her condo. She was ecstatic, gambling to her is what shopping is to me…. part cardio, part treasure hunt. Needless to say….she was dressed and ready to go forty minutes before our agreed upon departure time.

We arrived around two thirty; pre-early bird and post all-nighters. Even at that early hour the casino had that perpetual midnight thing going on. Since there are no clocks (who needs to be reminded of how quickly the time passes as one is losing ones mortgage money) and no windows (no need of fresh air either) the stale air and artificial light are your only indications that you’re indeed still alive and time is very much irrelevant.

Casinos seem to me to be set up to create an atmosphere that is part faux hope, tacky decorations and mostly desperation….not unlike New Year’s Eve.

Scientific studies have documented that the colors, lighting and especially the sounds (the music blaring, coins dropping, wheels spinning, bells ringing) all merge to create a cacophony of optimism that feeds the need to pull on the one armed bandit (or gambling of your choosing) in hopes of becoming king or queen for a day.

I’m not much of a gambler. Personally I think it’d be more fun to just throw money off a balcony and watch below as people scrambled to pick up a few Washington’s as I “made it rain”. At least that way you could actually see where your money was going as opposed to the casino where the house always wins and your money just gets disappears off the craps table or in Miss Cathy’s case inside of one the fifty-cent slot machines.

Miss Cathy is and has been a devotee of “the slots” for some time now. Once inside a casino she is like a kid at Disney or one of those lost souls at Willy Wonka’s and being seventy-four with dementia and a knee replacement has changed nothing. She was so excited she didn’t know where to go or what to do first.

She’d visited the casino with a girlfriend once before soon after the opening and said she was determined to find “her” machine but abandoned that quest almost as soon as it came out of her mouth in favor of whatever big, bright, shiny box caught her eye.

She insisted that I register for a casino card “just in case” I wanted to play. Apparently the card logs you into the casino’s system and keeps track of how much you spend, giving you points in exchange for your “cash donations”. Being the trooper that I’m not I agreed to get a card but stupidly told her to not wait for me, to go find “her” machine and that I would catch up to her.

Moments later, with my new casino card and lanyard in hand I went in search of my mother. Much to my horror (and humor) I quickly found that it wasn’t going to be as easy as I thought. Truth was….I wasn’t thinking. As I looked up and down the rows of penny to dollars slot machines all I could see were old people.

Every other stooped over, gray haired, little old lady in a loud oversized tee and elastic waist pants could have been Miss Cathy…quelle horror!

What did I expect….diversity? This place was about as diverse as a Mitt Romney rally. I’m sure I sidestepped a lot of his base as I made my way past walkers, wheelchairs and canes. Where was my mommy? I didn’t know if I was panicked or pissed.

I almost presented myself to security to have them make an announcement over the loudspeaker for a “lost child”. After more trips than I care to admit walking up and down the aisles I finally found her.

And there she was, in that gambler’s haze; one hand on her purse and the other on the pulley, brows furrowed as she watched the wheels turn, oblivious to anything or anyone else around her as she looked at the screen hoping the wheels would land on whatever it is they’re suppose to stop on for a big pay off…they never did….so pull she continued.

So, I held her purse and handed her twenty dollars bills one a time as she fed the machine and fattened the coffers of the casino, like so many of her geriatric playmates.

It’s been awhile since I’ve been in a casino, everything is computerized now and you get slips of paper with barcodes on them showing your winnings (if you’re lucky enough to get any). I actually liked it better in the old days when the slots used to spit coins out when you won and you greedily scooped them up and put them in a plastic bucket that the casino provided.

Back then Miss Cathy would sit transfixed in front of a slot machine (Okay, so not everything has changed) and I’d hold her bucket for her and if/when she got lucky and her bucket would fill with coins that we’d later redeem for paper money. This would last until the spell was broken, and by “broken” I mean that she stopped when she was broke.

But, as I was “helping” her by holding her bucket it was easy to skim a little (or a lot) of her earnings and put them aside (in another bucket) so she’d have something to show for her efforts at the end of the night (or day). I would quietly hold onto her winnings (unbeknownst to her). As long as she could reach down and grab another coin to feed back into the machine she had no interest in how much was actually in her bucket.

I would do this until I was content that I had (at least) enough of her original investment in a bucket and then I would take a break. I would go to one of the many eating establishments in the casino for what John Travolta’s character; Vincent Vega in Pulp Fiction would call a “Royale with cheese” (French for “Big Mac”).  Casinos are a lot like the sandwich that Vega’s craved and coveted; over the top for what it is, the hype offering more than the product can ever deliver and even though you know that you have to have it anyway. It’s greasy, addictive and not good for you no matter how you dress it up a give it a fancy name, French or otherwise.

I could relax for a little while knowing that it wouldn’t be long before Miss Cathy was out of L’Argent and ready to go home.

But, those days are gone and with paper replacing coins I can no longer hide her money from her so easily. I have to contend myself with just standing around and bearing witness to her losing (but in fairness to her she does win sometimes..but more often than not she just gambles that all away too).

None of it really matters though, because, like my shopping excursions where I may come home empty handed I’m still happy to have gone. So, even though she may be “busted and disgusted” as she so often says at the end of one of these outings, I know that she’s happy, too and she’s already looking forward to the “next time”, dreaming of her big pay day from the casino while I have thoughts of the casino, royale….with cheese. 

For whom the pain tolls

It amazes me what we (I) let our (my) LWA (loved one with Alzheimer’s) get away with in the name of the disease. Not only are we chauffer, cleaner and go-fer; we’re also expected to morph into the occasional doormat-ter.

I (thought) I learned how to let comments roll off my back like water off the proverbially duck as advised by all the doctors and everything I’ve read but after the tongue-lashing Miss Cathy unleashed with such fury a few months ago I was left feeling emotionally eviscerated.

The details of which I’m hoping my best to forget and have repeated enough so suffice to say my entire purpose for being came into question. Unfortunately, it’s something that I don’t think I’ll ever forget (and I’m someone who never says never-even though I just said “ever”).

After it happened I was confused and shell-shocked. We’ve had arguments and disagreements in the past but her reaction to the situation was so much bigger than the size of the incident and it was just too much.

I don’t know (which adds to the confusion) if it’s the Alzheimer’s, old age, fear or a combination of it all but emotional boundaries were crossed and her filter (which at best was barely there) was completely gone so she said things I never imagined I’d hear, the venom viscous with hate.

The only thing I could think to do was to get in my car and drive. I stopped at a park nearby and sat there trying to take in what had just happened. I got on my phone and first turned to my brother, who listened and was some comfort but could offer little else.

It was my friends, Brian and William that really came through for me. They gave me the words that turned into actions that helped me go back (which in and of itself was pretty powerful because every fiber in my being was screaming for me to just drive; where I didn’t know-anywhere but back there).

But, what they said (each in own way) has kept me and keeps me here/there to this day.

Brian reminded me that I’m not alone and that I’m not “stuck”, I can always get professional help for her and leave. William told me, “much will be said” (and he should know-he has challenges of his own caring for both his parents. He shared some of the things that have been said to him and he’s still there, everyday caring for them both.) He also told me to just get a thicker skin, “apologize to her” (even if I didn’t mean it or understand why it was important) and to just……“go on”.

So, I took their advice and went back.

Oh, don’t worry; Miss Cathy is fine (she hasn’t been stuffed and propped up in a rocker somewhere waiting to be discovered in the last reel like Norman Bates’ mother) in fact, she’s better than ever actually. She unleashed, I “apologized” and now she seems all the better for having gotten (whatever) off her chest.

I haven’t shirked my obligations either. I go through the motions day to day but something has shifted in me and when my day is done (more often than not) I find that I question my role as caregiver and my continued commitment to stay here. I have tried my best to show up for my duties (both as son and caregiver) but my heart (what’s left of it) isn’t into it anymore.

It’s humbling but I’m almost ready to concede that the Alz wins.

I confess I thought I was made of stronger stuff; having survived heartbreak, the death of friends to AIDs, domestic abuse, bankruptcy, alcoholism and career suicide…to name a few) but I guess I’ve met my match.

I was thinking I might have some more fight left in me (or at least a few more ounces of blood to give) but that changed the other day when it happened again. While it wasn’t the bloodletting that occurred before, once again Miss Cathy vented her anger. But this time I wasn’t taken totally of guard, the surface was sliced, old wounds were re-opened and there was a little pain, an emotional paper-cut if you will.

Unfortunately, the people closest to us can hurt us the most because while they love us for our strengths they also know our weaknesses and have to power to turn that against us. Alzheimer’s has a way of releasing the person suffering with the disease from the responsibility of keeping that trust.

Sometimes, you can see that the LWA knows they’ve over-stepped and are remorseful and other times they seem to know not the destruction they’ve wrecked and the emotional damage done. They seem just as pained and confused as the person they’ve hurt.

And while it’s forgivable (hopefully) to the one who’s boundaries have been broken, it’s like the bell that once rung cannot be un-wrung and they are left to decide for whom the pain tolls.

Home

“When I think of home I think of a place where there’s love all around me. I wish I was home, I wish I was back there”…but there is no there, there.

All Dorothy had to do was click her heels in the movie or on the Broadway stage and there she went, back over the rainbow safe and sound to a familiar place.

Great sentiment and a wonderful feeling I’m sure but I haven’t felt at home for some time now. I left my life to join Miss Cathy in hers in her home some time ago but it’s never felt like “home” to me.

I told an ex of mine once that “home” is wherever your mother is-not the address or the physical place. But now, as Alzheimer’s has started to claim even a fraction of my mother’s mind she’s less “mother” and more “patient”.

Alzheimer’s has turned what used to be a safe place into a battleground; full of land mines that have to be avoided less they blow up into harsh words and tension.

These days I find that it’s easier to isolate myself in my little bedroom to avoid conflict. So, I inhabit the different areas of the room or “zones” as I call them as I move through my day, always having an ear out for when the coast is clear to go to the kitchen or use the balcony.

I don’t think I’ve sat in the living room in months, and if I have it’s just for the few moments it takes to relay some information to Miss Cathy or to listen to a request of hers.

Things have gone downhill since my last post which is the reason I haven’t been writing. It’s gotten too real to relay. I found that (unlike before) it wasn’t therapeutic or helpful to write about what’s going on because it was too painful emotionally to relive it on paper (on online as the case may be).

So, I don’t feel like I have a home and with no home you have no foundation and with no foundation you have no support and without support you’re all alone and that is a lonely place to be, “especially in a crowd” as Marilyn Monroe says in Gentlemen prefer Blondes.

But, what I have learned even in the face of no home, no foundation and no support is that I have “me” and that’s a pretty good start. I think of me as being a brick, and my “will to continue” my mortar so with brick(s) and mortar I can start to construct my own foundation, my own support and ultimately my own home.

Or maybe…just maybe, because I’ve always had me- like Dorothy I was (am) home already.

As time goes by

I’ve been remiss in writing for the past month. The reasons being unexpected work (which is good) and a monetary self-consciousness (which is bad) about what I’ve been blogging and posting these last eighteen months or so.

I’d been blogging more or less as I’ve kept my journal for decades now; un-self conscious and un-varnished, pretty much the truth of my experience (as I see it, of course), without thought (not much anyway) of tone, ramifications or implications.

Funny how with a little time and distance you can look at something and suddenly see it in a completely different light (kinda like putting on that swim-suit that you got on sale in the off season and now that it’ll soon be summer you put it for the first time and wonder-what was I thinking?).

I made the mistake of re-reading some of my old posts and felt suddenly naked and very exposed (except for that swim-suit of course;) Well, I won’t be doing that again (reading that is-not writing). I’m not going to start editing myself or over thinking what I write-I mean, what would be the point if I did that? No, I’ll just continue to move forward in print and leave the looking back to others.

Since my last post I’ve taken Miss Cathy to her neurologist and to her primary care physician for her regularly scheduled check-ups. They both gave her glowing reports. She did better on the neurologists’ memory and cognitive skill’s tests than she’s ever done before and other than gaining a little weight, her health is better than ever, too.

Dr Aleymayehu, her neurologist explained (once again when she asked about her medication) that the Aricept she’s taking is not a “cure” but it “delays” the Alzheimer’s patient from progressing in the disease. Since she was diagnosed so early moms’ pretty much frozen in time with most of her wits about her so Miss Cathy is one of the lucky ones.

Sure, she still has some confusion, she still has anger issues and some days she gets overwhelmed when there are too many things going on. But, lets face it; those things are all manageable considering what others who are further along in the disease are experiencing

With her doing so much better I can understand why she keeps asking the doctor about the Aricept and what it’s suppose to be doing to help her. We know (well, I know) that Alzheimer’s is a progressive disease and it has no specific timeline of deterioration so it’s possible that Miss Cathy could be the way she is now for years to come. So, it’ all wonderful news but “what’s a caregiver to do?”

Lately I feel I have less purpose here. The first year was all about getting her acclimated to her (and my) new life and for some time she really seemed to struggle with the “day to day” and needed a lot of hands on care. And I was good at helping with that.

Don’t get me wrong, I’m not saying I want (or need her to be sick) it’s just that my days had purpose when she needed me and every day seemed to be a re-affirmation of my decision to leave my life to come join hers.

As time has gone by she’s more independent (compared to where she was after her fall in January of 2010) and has more days where she’s cleared headed and functioning like she had before her diagnosis (albeit slower than before).

She needs me less and I (feel anyway) like I’ve gone from caregiver to reluctant roommate. Or like I’m trapped in some vortex where it’s ten years ago and I’m on a visit home to see my mom but the visit never ends.

I hate to be a “Debbie downer” but I have to ask, “why am I still here?”