Tag Archives: Life

#Physician, “Heal Thyself”: Pt. ll

Posted in April by

As a caregiver I’m responsible for all aspects of my loved one’s care, and as Miss Cathy’s son I feel doubly responsible for her physical and emotional well-being.

To that end I have tried my best to work with doctors’ that she’s had relationships with for years as well as those that are new to both of us since her Alz diagnosis in 2010.

It’s my feeling that at the end of the day she is only as healthy and happy as her ‘team’ of doctors has helped her to be (and that means if it’s a regular check up or when she is in crisis).

My opinion(s) of her ‘team’ (of doctors) shouldn’t matter one way or another (you know what they say about ‘opinions’…) butt, of course I have one (some) and here they are:

Dr S, The Ophthalmologist

After her (seemingly) abrupt loss of vision and increasing confusion, the eye specialist was Miss Cathy’s first request of a physician to ‘see’ and it made sense since ‘suddenly’ she couldn’t.

Miss Cathy has been going to Dr S for years; a birth defect took away the sight in her left eye so she’s been dependent on her right eye her entire life.

We waited almost a week for the appointment because the receptionist said, “that was all they had” and my explanation of her situation didn’t move her to get us in any sooner.

The doctor’s assistant brought us back into a room where she performed some preliminary tests. Dr S came in soon after to take over the exam when it was clear to the assistant that Miss Cathy’s condition was anything but preliminary (and above her pay grade).

He asked her several questions, had her hold a Victorian looking contraption and told him what she could (or could not) see through it, the after some other optical tests he rendered his opinion.

He ruled out a stroke, then he said that he saw no blood behind the eye so he could only conclude that the eye was ‘healthy’ and he seemed just as puzzled as we were that she couldn’t see clearly….literally and figuratively.

When Dr S confessed that her problem might be “outside of his area of expertise” I wasn’t happy that he didn’t have a solution to the problem but I was impressed with his honesty and humility. While I find doctors to be honest I’ve seen more hubris than humility from most.

He suggested that she might need to consult a neuro-opthamalogist to determine if there was a problem between the optic nerve and the brain.

After finishing up my copious note taking I told him that she already had an appointment to see her Neurologist, Dr A next.

He asked who her General Practioner was, recognized the name and said that he would confer with him as well as the Neurologist.

“We’ll take it from there” were his parting words as he offered us his hand but no solution before saying goodbye.

We left his office knowing no more than when we first arrived but after hearing how long it took us to get an appointment Doctor S said that they were upgrading her chart to “priority” (kinda like being bumped unexpectedly to Business Class from Coach).

I walked out feeling as if he was either trying to express some sense of urgency for her condition or that it was just some bullshit gesture for a flight (diagnosis) delayed.

Sometimes all you can do is #laugh

Posted in April by

“Can you come here for a minute?”

I heard the familiar refrain come from the direction of Miss Cathy’s bedroom the other morning as I got out of bed to greet a new day.

“I can’t even put my damn bra on!” She said with disgust.

Well, at least she’s not trying to put her tee shirt on as pants I thought to myself as I wiped the last of sleep from my eyes.

And sure enough, as I walked the few feet into her room my newly wakened eyes saw that her bra was not only on backwards…it was inside out as well.

It’s been about a month now since her step downward; it started with a loss of vision, compounded by confusion over the ability to see and use everyday objects. And now the simplest of tasks (things she’s been doing her entire life) have become complicated.

Watching her struggle with her under garment, as if someone had made an over the shoulder Rubik’s cube instead of a brassiere, looking nothing like the iconic Horst P. Horst photo of a woman caught in the act of snapping her brassiere, so famously paid tribute to in Madonna’s “Vogue” music video, Miss Cathy seemed as emotionally twisted as her bra straps.

She’d managed to put one strap up over her shoulder but the other was lost under a fold of skin in her armpit, somehow the back was in the front, the whole thing was inside out and the closures were pressed down on her breasts with the cups hanging off her back, looking about as useful as tits on a bull.

“How in the world?” I started to say, then I had to laugh and so did she.

“Damn!” she said between chuckles as I gently unhooked the closures, releasing her ample bosom, taking the garment off her to reconceive it for its intended purpose.

“All these damn titties!” She said looking down at herself and talking as if she were divulging a secret her body was not aware of.

“I hate these fuckers!”

“Well” I said giggling, helping her to put her brassiere on correctly.

Nothing like seeing an old lady topless, especially your mom, first thing in the morning to let you know what kinda day you’re in for.

“Put you boobs away.”

“I wish I could cut ‘em off! I hated them even when I was a girl and they first started growing. I know men are suppose to like’m.” She said, arranging herself into her bra.
“I wonder what they’d think if they had them instead of balls and they had to lug’m around all the time.”

I helped her snap shut the last closure in the back the helped her with put on her top tehn said, “I’m sure if they had tits and no balls they’d think they were women.”

….more laughter.

Miss Cathy has left the building: Pt l

Posted in April by

This morning a woman that I could hardly recognize greeted me at my door.

“Can you help me find my pants?” She said as she started to put the yellow tee shirt in her hands on as if they were trousers.

Today was the second morning in a row that Miss Cathy was having this particular problem.

Even after I pointed out the obvious to her she didn’t really seem to comprehend what I was saying.

“What is that in your hands?” I asked, ” No……..don’t try to your leg through it, just tell me what it is.”

“This?” she said holding up the tee as if it were something new that she’d discovered, “It’s a shirt.”

“Right… and we put shirts on to cover up our tops and pants to cover our bottoms. So where does the shirt go?”

“On top.”

“Exactly! Only let me find you a fresh one”, I said getting up and rubbing the sleep out of my eyes. “I think it’s time we gave that one a break for awhile.”

She went to her room and sat on her bed to put on the blue top that I found on a pile of clean clothes near her bed looking perplexed. She said that she still didn’t know where her pants were as she started to pull at one of the other tops (in yet another pile) on her bed.

“Are these them?”

Into the breach once more to discuss breeches (what was and what wasn’t).

I rummaged round in her closet and finally located a pair of lightweight pants appropriate enough for her to wear during the unusually warm weather we’re having (94 degrees in April).

I also made a mental note to block out some time (soon) to clean her out her closet; I couldn’t believe how much of her clothes were scattered on the floor, the clothes were strewn about like something out of the mind of a heroin addict.

I looked back to see what progress she’d made dressing only to see that she was laying back in bed with the sheet pulled up around her shoulders saying she was tired as if she’d just worked a long hard day and it was bedtime.

Clearly, the ‘pant/shirt’ lesson had exhausted her but I had to remind her that it was only 8:30 in the morning and she needed to get up, have some breakfast and take her meds.

Before she’d agree to get out of bed she looked up at me and asked, “What’s wrong with me?”

“You have Alzheimer’s.”

The other #”F” word: Part l

Posted in April by

“Well!”, Miss Cathy said.

I could hear her voice as she walked closer to where I was working in my room from where she had been in the ‘Living’.

“I fucked up the TV again!”

And sure enough, upon closer inspection I could see that the TV screen was blue where there should have been the antiseptic smile of Bob Eubanks, Dick Clark or some other (g)host from the GameShow Network that she watched at that time of day.

She had somehow hit a combination of buttons on the remote that switched the TV to “Video” mode and had no idea how to get it back.

I’d been home just a day or two from a short trip to NYC when Miss Cathy first “forgot” how to use the remote. Then the next morning she had trouble disabling the security system and problems with the telephone; each day seemed to bring more memory lapse and confusion.

Part of me couldn’t help but note that she presented with these new challenges after I’d been gone for a while and before I was scheduled to go away again……..was…is there a connection?

Part of what keeps a person with Alzheimer’s stable (though there is no guarantee) is to feel safe in their surroundings, continuity and routine.

Had I triggered this step back to her future by going away?

True Colors

Posted in September by

As this election season kicks into high gear it’s been interesting to see Miss Cathy engaging in the process.

It goes without saying that this lady is gaga for President Obama. She may not always remember what day it is but she remembers the date that the president was inaugurated.

Miss Cathy was the first person I called back on 2008 when our first African-American President was declared. I remember her sounding the happiest I’d heard in a long time, she was (almost) speechless, unusual for her l know, but her joy was that strong.

I can’t imagine how she felt, being someone that had grown up in the Jim Crow South, seeing what she never dared dream possible-at least not in her lifetime.

She was part of a generation of African-Americans who had migrated from the Deep South northward hoping for a better life for themselves and their families, most of whom were largely successful in their endeavors, living their ‘American Dream’ in shades of black and brown, free of the ‘whites only’ reality of their upbringing.

Miss Cathy wasn’t the first in her family to leave home but she was the only one to graduate high school, with no encouragement from her family. It’s not that they didn’t care-they just didn’t understand that education meant opportunity but she did, and she knew hers was somewhere outside of the city limits of Henderson, North Carolina.

She would go on to have a successful career as a correspondence clerk for the Veterans Administration in Washington DC, where she developed a lifelong love of the military and supporting veterans and their families for their sacrifice.

While I knew most of this about her, she told me alot more about her life experiences while we watched the DNC Convention together on TV.

What I didn’t know until I joined her life was how political she is, come to think of it, she hasn’t missed casting a ballot since her diagnosis.

She’s a pretty outspoken voting rights advocate; especially at the local level, she has little patience for people that complain about government but then don’t vote (guess the tree can fall near the apple, too).

She feels that voting is almost a sacred duty, keenly aware of all those that have passed so that she could exercise her constitutional right. And she rails against those (especially minorities) who do not vote; she has one word for them-‘stupid’.

Since the conventions we’ve been talking politics, past and present, sometime deep into the night. Talking with her is an interesting contrast to the shades of grey the candidates are drawing between the class distinctions in our country, redistribution of wealth, race and the role of government in helping people better themselves as well as those who have worked their entire lives helping themselves to their (in my opinion) well deserved social security…….Miss Cathy wasn’t drawn that way-it’s who she is.

The debates are just around the corner. I’m looking forward to watching them with her and hearing her take on the candidate’s views.

I’m sure her commentary will be funny, insightful and as unique as she is, running the gamut from blue to red-beyond just primary colors.

Funny Lady

Posted in September by

I picked up Miss Cathy the other day from the beauty salon where I’d dropped her off earlier to get her ‘do did’. She started nattering on the minute the back door was opened for her (as usual) and was in the middle of a story before she had her seatbelt on.

She was telling me that the beautician who curled and styled her hair was giggling and laughing at practically everything she said and I could hear that it bothered her.

It didn’t bother her that not long after sitting in the chair the young woman asked if she could call her, ‘Mom’.

For some reason Miss Cathy seems to attract a lot of ‘children’. She’s like the Pied Piper with a cane, beguiling the young and the not so young (she actually had a neighbor-who is past sixty-ask if he could call her ‘mom’).

Somehow, the ‘mom’ moniker applied even before she became a little old, round, affectionate person whose large bosom would cradle many a head.

And when I say ‘mom’, I’m not talking about the way her neurologist addresses her during their meetings, he’s from another part of the world and I’m sure it’s used as a sign of respect like “sir’ or ‘madam’ (but, frankly I think it’s a sign of laziness and a way to avoid knowing his patient’s name….but I digress).

Even when I was young (which meant Miss Cathy’s bosom was that much younger) I can remember my friends calling her “Mom” or “Miss Cathy” (the affectionate nickname she became known by that stuck), which pretty much means the same thing (without taking anything away for the person’s birth parent).

But, back to the here and now…..

I looked at her face, framed by soft waves of salt and pepper hair, in the rear view mirror as I was driving, listening to her and I could see that she was perplexed by her new daughter’s laughter, and that she was wondering whether or not she was being laughed at.

She said she didn’t think she was being funny.

I didn’t need to know the specifics, not that that stopped her from telling me every-word-that-was-spoken (she’s not only ‘Miss’ Cathy, she’s a ‘Chatty’ Cathy, too). I knew from experience what had happened.

I told her it’s the way that she talks openly, honestly and colorfully about things that people find funny, that Miss Cathy’s candor is refreshing to most people.
I can see that they are charmed by her insights and surprised by the occasional vulgarity that is quite frankly-funny (her filter, which at best was minimal, is pretty much gone now after her diagnosis).

I told her that it’s her delivery about everyday observations and her opinions of the subject matter, not the content that people find amusing.

In another life (with her timing and flair for the dramatic) she would have been a damn good actress.

I told her that she should take the laugher as a compliment, that not everybody is funny, and that there’s a difference between being laughed with (which in my opinion is a sign of intelligence) and being laughed at which we all know (unfortunately) is a sign of the opposite.

She thought about I was said, seemed satisfied with the analysis and as she futzed with her hair (re-styling the styling) then replied, “Oh, I never thought about it like that, I like that much better. That’s good because with all that laughing I was about to get ticked off!”

Do I look fat in this life?

Posted in August by

There are a lot of things that go into being a caregiver; some you know (and are prepared for) and there are other things you learn as you go.

I’ve found a lot of support these past two years from Alz.org, chat rooms and support group meetings but one thing that surprised me about this experience that seems to be overlooked and never really talked about (at least not to me) is the tendency for the caregiver to get FAT.

I look around at a lot of the caregivers that I’ve met and I see a lot of lard asses-mine especially. As Whoopi Goldberg quipped, “Once I thought someone was sneaking up behind me and when I turned to look I realized it was my own ass.”

I bring this up not to say that this happens all the time to everyone in my situation. No, there are a lot of caregivers who have been able to balance the enormity of their new roles without becoming enormous themselves.

But it did get me to thinking about the connection between the stress we’re under and obesity.

We all know that obesity is rampant in our society; poor diets and lack of exercise being two (obvious) reasons but stress has been linked as a contributing factor as well. For me, and I’m only talking about my own tonnage here, I found that there was so much to do in the beginning and so much change occurring that once I had my routines set up for my loved one and I had a chance to catch my breathe and focus on myself what I saw surprised me.

How did this happen and when did I let myself go?

I began to wonder, like the “freshman fifteen” that some young people gain during there first year of college; due to the change in environment, the stress and the anxiety of being on their own for the first time, is there a similar correlation for caregivers as we transition into a new environment, as well as the stress and anxiety of “Not” being on our own for the first time as well?

If freshman can be forgiven for their “fifteen”, is it possible for me to get a little understanding for my “Alzheimer’s eight” or the “Dementia dozen”?

Believe me, I take full responsibility for my rotund-ti-ty, as my role as caregiver has expanded so has my waistline. And while I never had Paul Ryan’s abs (and thankfully I never had his views on restricting women’s reproductive rights either) I would like to see my feet again some day.

It’s nobody’s fault but my own and intellectually I know what needs to be done to return to my former svelte self-eat less and exercise. But, that’s easier said than done when you’ve stressed, often lonely and lack the motivation to give yourself the time and energy you’ve poured into your charge.

It’s not that I’ve been “so” selfless, I’ve just been too tired to care and being out of my own environment and routines I’ve found that I’ve developed some really bad habits-namely eating too much of the wrong food and not moving my body any more than is necessary.

The reality is that at the end of a day running around looking after someone else the last thing I want to do is run for myself.

I used to go to the gym, walk (I’m a former four mile a day runner but I blew my knees out years ago and switched to walking long distances instead) and maintained a rigorous stretching and exercise routine.

I ate a healthy, varied diet of vegetables, fruits, chicken, fish, some red meat and low fat or sugar free desserts. It was satisfying, I didn’t feel deprived and it gave me the energy I needed to fuel my life.

Unfortunately, it seem that these days I’ve pretty much abandoned anything that’s healthy for whatever is quick and easy (which mean it’s usually something frozen, processed and full of sugar and/or sodium). And I greedily grab for any and everything that can give me a moment’s comfort or (faux) sense of relief from my daily life’s stresses (read: junk food and sweets).

This is a classic case of emotional eating and sublimation.

Think of it this way, while the anorexic or bulimic denies themselves food or regurgitate as a way to control one aspect of a life off-kilter, (maybe) my eating and sloth like existence is my way of “not” having to be in control when I have to be responsible for someone else all the time-for the first time.

Hmmmm, maybe I’m onto something here….but, like the person who tries to commit suicide-you’re trying to kill the wrong person….so, maybe I’m force-feeding the wrong person, too (metaphorically).

No, I’m not saying I should be strapping Miss Cathy to her bed and feeding her color coordinated food nonstop till she fattens up like a piece of veal (not to say that she’s not doing a pretty good of that all on here own)…but I digress.

No, what I think my “light bulb” moment is telling me is that what I’ve been doing by engaging in behavior that I know is bad (and bad for me) is that I’m punishing myself instead of expressing the anger I feel toward my charge and the difficult situation I find myself in but was unprepared for emotionally (unknowingly).

So, I turn to food (that tasty panacea) and inertia; depression, denial and frustration all seem to more palatable when you’re prostrate with a plate.

Great, now that I’ve acknowledged the obvious I hope it’ll help when the cookies are calling me at midnight when I decide to stay up and watch “Shoah”.

While I seriously doubt that anything will change overnight with this revelation I do know that the first step to solving a problem is acknowledging it. I didn’t exactly work up a sweat thinking this through but I do think it was an exercise worth pursuing.

Who knows, now that the mind has been stimulated maybe I’ll surprise myself next by moving my body…….even if it’s just to push back from the table.

Casino..Royale…with cheese

Posted in July by

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 “Quarter Pounder”). 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

Posted in June by

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

Posted in May by

“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.