The other "F" word: Part l

“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? 

Flare-ups

It’s been months since my last communiqué and for that I am sorry.

Simply put there hasn’t been much to post; other than the occasional “flare up” of “Alz” life seemed to have fallen into a predictable, non eventful pattern.

I had a respite from the disease but, life being “life” and “Alz’” being “Alzheimer’s” things were bound to change.  

So, I am back, sharing the little things and the not so little things that have happened and that are happening now.

I haven’t been posting but I have been writing so some of what I’ll be sharing has already past so it’s out of time but not out of context.

It is odd and peculiar to this disease (and particularly cruel, I think) that weeks, even months can go by without incident then all of a sudden, as if someone turned “off” a switch, things that were routine and known are all at once foreign and unfamiliar.

Miss Cathy has gone from an occasional state of confusion to living in a place where simple acts; putting her shoes on the correct foot, disarming the security system and operating the television remote have become almost daily challenges.

Things that she’s done for years are now a struggle of some kind, I’ve watched as she seems to approach her routines with trepidation.

At first she made the usual excuses; food being burned (“The meat cooked too fast”) or not being able to operate the telephone (“Something is wrong with this phone, I need to call the telephone company”) and the remote (“I can’t see these numbers, they seem to be moving or something”) to a realization that it could possibly be something else, something more (“There’s something not right with my brain”)….and I agree.

Enough has happened that it’s time to get her ‘team’ (general practitioner, neurologist and even her ophthalmologist) back on board to check her out. Maybe she just needs new glasses, her diabetes could be a factor or her meds need  to be adjusted-or a combination of all the above.

No matter, it’s time to send a flare up to signal that the “Alz” has awaken from it’s slumber and it’s time to do battle; time to re-engage, re-learn and chart a new course of action.

I hope to get back to posting regularly and that you will continue to follow me on this journey-

Thank you

Blue Cathy

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

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?

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.