Time to make the Donuts

My day is not unlike that of Fred, the dutiful baker who goes off to work in the pre-dawn hours to shove dough in and out of the ovens (long before most people are awake and craving their daily doze of sugary pasty) only to come home in the dark of night and do it all over again the next day, and again, and again….well, you get the picture (rather, you’ve just seen the classic television commercial thanks to youtube).

But, instead of donuts my days and nights begin and end in the darkness working for Miss Cathy.

I rise around five a.m. to start my day (for her) by turning off the alarm system located on the kitchen wall and then pulling out whatever breakfast meats or leftover’s she’s going to eat; then into the living room where I turn on the TV, open the blinds and double check that her morning meds are in their container.

This wasn’t always my routine, and Lord knows I haven’t gotten up this early since I was in high school, living at home and part of my chores was to get up (long before I needed to for school) and go out to start my mother’s car to ‘warm’ it up, turn o the heater or a/c for her drive into work….. And irony of ironies, here I am almost forty years later getting up early on mom’s behalf as well….I guess there is a sort of symmetry to that, but I digress.

I’ve learned to do this after many morning where I was startled awake (more than once) by the sound of either the alarm going off (when she’s opened the front door and forgotten the alarm was still on) or it’s the electronic ‘beep-beep’ sound her frantically pushing buttons as she tries to remember and enter the code to disable said alarm system.

Other times I’ve been rudely awakened by the harsh, static noises emanating fro the television when she hits the wrong buttons that have me up with the bakers to get things ready for whenever she starts her day.

I make sure everything is ready just in case she stirs before me, then it’s back to bed for a couple hours before I get up to start ‘my’ day around eight thirty (I have the luxury of being an artist and have spent the majority of my career working for myself so I don’t have to report to an office).

I’ve don’t mind really, it’s quiet and peaceful, much like when she takes a nap in the afternoon or goes to sleep at night.

That’s when I find I can get things done around the house like cooking, laundry, cleaning, making phone calls to set up appointments or paperwork (I call those “administrative days”) without her being underfoot, needing me to any number of little things that add to distracting me form whatever I’m trying to do for me (or for her on her behalf).

At night, after I’ve given her evening meds and a few hours later turned out her light, I cook for the next day, straighten up the living room, clean the kitchen and then I get to have ‘my’ evening; to go for a swim lesson, read, write, watch TV or a film and occasionally to go out for a bit to remember what it feels like to have a life independent of being a caregiver.

Then, all too suddenly it’s time to turn on the alarm and it’s light out for me around midnight or so and before you know it, it’s time to get up to ‘make the donuts’.

Hair today (not) washed tomorrow: Pt. ll

I find no pleasure in harassing Miss Cathy about her hair.

I know it’s embarrassing, and I know it’s a hard thing to hear, what parent wants their child telling them ‘they need to wash their hair’…never mind that the ‘child’ in question is fifty-four years old.

Mom’s issues around taking a shower (more specifically refusing to wash her hair on a regular basis) are bordering on the pathological.

She insists that “I don’t know what l’m talking about” when it comes to her hair care.

Her ‘go to’ defense is that I don’t understand because ‘I’m a man’ (as if the addition of a Y chromosome has anything to do with the maintenance of the follicles on top of one’s head, which are identical regardless of sex, but facts and science don’t seem to dissuade her from her argument-much like the Republicans members of the Tea Party).

Her other line of reasoning (if you can call it that) is that I don’t understand because ‘she has a ‘chemical curl’.

For those readers that are not African-American, think the opposite of the “perm” you went to the Salon to get back in the 70’s to make your straight hair curly, blacks go to their hairstylist to straighten their natural curl so, somehow (in her mind) the fact that her hair’s been treated exempts her from the routines of regular shampooing.

I find both lines of defense equally irrelevant because a) hair is hair-no matter on whose head it lies and 2) in my youth I’d been to more salons and had my hair “fried, dyed and laid to the side” more times than I care admit or that she’s ever likely to subject her hair to and c) who gives a sh*t if your hair is chemically treated or natural!

Hair is hair and non-washed hair is still unclean hair, no matter what a person’s done to it.

The last time we argued she told me that I don’t understand because, “black hair is different” at which point I looked at her as if she’d completely lost her mind and said,
“Just who do you think you’re talking to? What do you think I am?”

“Are you kidding me?!”

I’ve always found the ‘it’s a black thang’ a lazy (and obvious) argument between the races so imagine my disappointment (and surprise) that she was trying to play the ‘race’ card-and against her own race (not to mention her own flesh and blood…unless she forget to tell me that I’m some immaculately conceived progeny that’s been checking the wrong ethnic box on the census all these years).

Anyway, there’s Alzheimer’s and there’s just plain old “whatchu talkin’ about Miss Cathy?”

“Sometimes you can’t see the forest for the fire”

We’ve arrived at the place where simple things are becoming difficult. We no longer live on easy street where weeks go by without a visit from signs of dementia.

Where it was once a ‘some-time’ thing, now Alzheimer’s has come to take up part-time residence.

Who’s to say how many years Miss Cathy has before she lives in a permanent state of confusion.

Three years ago, long before mom’s recent decline but sometime soon after she was first diagnosed I advised her to prepare for this day (or something much like it).

I suggested that she write down lists of contacts; names and addresses of all the people (friends and family) that she talked to on a regular basis as well as her favorite TV shows; the times and channels so that she would have them for easy reference later on when her memory failed and she’d forgotten all things familiar.

I also suggested (while she was still ‘sharp’ and more or less ‘herself’) that she make a point of flexing her mind ‘muscle’ and practice crosswords or put a jigsaw puzzle together, anything that would help her mind stay active instead of just sitting in front of the television hour upon hour, day in and day out then laying in bed for the rest of the evening, letting her intellect go soft.

She had other ideas of course, as is the case with most people who are in denial and not ready to accept what lies ahead, she let my ‘suggestions’ go in one ear and out the other.

My fear was that Miss Cathy’s mind was getting soft but her head was hard and she did what she’d always done, which was exactly what she wanted, regardless of anything I or her doctors’ advised.

So, she did very little to prepare for today and today (as has been true every other day for the last several months) she cannot read a page on a book, dial a number on the telephone (usually connecting with the wrong person at the wrong number) and gets confused by the everyday routines and objects that should be as familiar to her as the nose on her face.

Today she retains less and less new information and the old knowledge she once possessed is harder to grasp.

And since she never bothered to write down the things I asked for I’ve had to become somewhat of a Sherlock Holmes to decipher “who” she intends to call, “what” she’s searching for and “where” her favorite programs are on TV.
(I’ve since started compiling some lists of my own (of Miss Cathy’s social life) to go along with my medical notes).

When these new challenges first presented themselves I tried to get her to use sense memory instead of sight or other ‘tricks’ to help her navigate through her day or operate familiar things but she was quick to anger.

“I done told you I can’t see, I don’t know when you people are going to understand that I can’t see anything!”

“You people?”

So now I’m part of the preverbal you people and she can’t see that I’m the one person by side supporting her on a daily basis.

No matter, she can’t see the irony that her protests are just validating what I was trying to get her to ‘see’ but I can.

Oh well, like Miss Cathy is want to say, “Sometimes you can’t see the forest for the fire.”

The Group: Pt. Vl

I thought about standing up and excusing myself from the meeting on the pretext of going to the restroom and not coming back, skipping out to the shopping mall across the highway for some retail therapy instead.

But, I stayed.

And soon enough the meeting got underway, so I was more or less compelled to remain (but I kept an eye peeled on the closed door across the room from where I sat to remind myself that it was there ‘just in case’ I wanted to fling it open and flee).

The meeting was led by a woman who introduced herself as a social worker and the founder of an “eldercare” management services company with a long history working in social services. I was impressed, with her credentials and by her calm, professional yet warm demeanor.

She told us (though clearly most of the women in the room were already familiar with the ‘rules’ so she was obviously speaking to the few of us that were ‘newbies’) that her function was to facilitate, answer any questions we might have but we shouldn’t be surprised that what we shared with each other was probably going to be more helpful than anything she might say.

She stressed that we should feel free to say whatever we needed to, that there was no judgment and that this was a safe place, we were reminded that anonymity was more or practiced and not to gossip about what we’d heard or “out” people if you saw them in public (it all sounded very much in the tradition of 12 steps meetings that have a saying, “What you hear here, stays here”).

The facilitator gave me the impression of someone who’s heard and seen it all, so whatever any of us could say would not be new to her.

She then outlined the structure and guidelines for the meeting so we’d know what to expect for the next hour and half before having each of us tell the group our names (first names mostly but for some reason when it was my turn I gave my surname as well, as if I were being interviewed for a job or something), we were also asked to state the relationship to the loved one we were caring for and their diagnosis.

I found her to be professional, yet personable enough so that someone like me, wound up tighter than a clock, could relax (a bit) and start to trust the process and the new people that surrounded me.

Sure enough, soon enough, I found myself more at ease; my flight instinct all but gone and my judgmental bullshit evaporating like the ‘hot air’ that it was.

Another day, another Doctor: Pt. ll

It was evident long before we got to Dr G’s by the way Miss Cathy was acting that it was going to be an ‘off’ day (and I didn’t need to check the cutlery drawer, either).

The ride to his office wasn’t so bad, no rumpling through her purse or rambling about the weather (and thanks to a slight increase in her Lexapro) she’s not as jumpy during the car ride-but that’s probably due more to the fact hat she’s being chauffeured around while she sits in the back seat like her fictional movie contemporary ‘Miss Daisy”.

Anyway, I noticed when we arrived that she was slower than usual getting out of the car, which is hard to imagine since she’s usually moving about as a fast as a turtle and just as interesting to watch.

So, instead of hanging back to see her wrestle with unbuckling the seatbelt I walked ahead, went into the doctor’s office, dropped my ‘Cathy Clutch’ on a chair, signed in for her, then went back to the door to see where she was (or if she was a heap of little old lady bits piled on the pavement).

When I cracked the door open I spied her about fifty feet away from the steps to the entrance at a turn in the sidewalk. For whatever reason she chose to (try) to walk around a garage can (placed near the edge of the sidewalk) by going ‘nearer’ the outside edge of the sidewalk where the concrete was cracked and the slabs were starting to separate exposing some of the sand foundation instead of walking toward the center where it was smooth and unobstructed…that’s “my” Miss Cathy, give her a choice and chances are this is what you’ll get-the road less travelled (because it’s usually under construction).

From the look on her face I could tell she was determined to navigate the crack (as well as the turn) in the sidewalk, the last time I saw her concentrating this hard she was at the ‘Live Casino’ pulling on a slot machine.

She always has her cane with her whenever we’re out in public (never uses it at home) because she’s afraid she’s going to fall.

She was picking at the sidewalk with it as if it (the sidewalk) was moving or there was a snake that she was trying to spike.

At the same time she was engaged in a sort of time lapsed back and forth with her feet, slowly lifting one then the other, tentatively reaching out with her foot before putting it down and starting over with the other in her attempt to move forward, brow furrowed, like a runner trying to navigate a hurdle that’s suddenly been raised on the track.

You might be wondering ‘Why didn’t I just go help her?” or for that matter, why didn’t I help her get out of the car?

Well, the simple truth is that she exercises (her body and her mind) so little that I feel I’d be doing her a disservice by stepping in to help (especially if she’s in a position to help herself).

And I do so much for her already that I have to be careful to draw a line somewhere before total dependence.

Besides, I always check to make sure she’s physically not in danger.

I’m like a parent hiding somewhere that their child can’t see but are able to watch as the young one (‘old one’ in my case) walk out into the world alone (or so they think), I’m there (just out of site) watching to see that she gets to where she’s going (safely) and I’m always there to lend a hand if she needs one.

And more often than not Miss Cathy, left to her own devices, has that steely determination, just like that athlete during a track and field event, to jump her hurdle(s) or in her case, ‘step over a crack in the sidewalk’ and finally cross the finish line, which that day happened to be four steps up to the physician’s door.

Calculating Cutlery: Pt l

As any good caregiver will tell you, you quickly develop a second sense of your loved one’s state of mind after witnessing Alzheimer’s day in and day out.

You don’t have to be clairvoyant-just observant.

For example, I’ve learned that I can tell what sort of day I’m in for simply by looking into the cutlery drawer.

If, when I awake and go into the kitchen to make my coffee and look and see that the knives and forks are still in their respective slots in the tray (that I’ve returned them to the night before when I put away the dishes) then it’s probably going to be an easy day, a day where Miss Cathy is more or less self sufficient and not much is asked of me.

But, if I see that there is chaos and anarchy in the drawer; spoons and forks co-habitating and butter and steak knives fighting to occupy the same space then that’s a pretty good indicator that it’s going to be a long, long day.

At first I thought she was just ‘in a rush’ or ‘not paying attention’ and when I asked her about the mismatched cutlery she said she was “just being lazy” and would do better.

She was true to her word for a time but then she’d go back to making a mess.

This back and forth, with me playing “fork police” and Miss Cathy the “perp” went on for quite awhile. To the average person this may seem like ‘no big deal’ but caregivers get what I’m going on about.

It’s not the ‘mess’ (and no, I’m not comparing myself to Joan Crawford, as she was presented to the world by her victim-I mean ‘daughter’, Christina Crawford in the early 80’s biography and later cult classic “Mommie Dearest”, who happened to clean compulsively (usually three sheets to the wind) and clarify to her daughter after she’d dragged her out of bed in the middle of the night to help her clean that she wasn’t mad at ‘her’ (Christina) but that she was mad at the ‘dirt’).

No, this wasn’t about the mess, it was about trying to get a loved one with Alzheimer’s to try to ‘remember’ what they’d committed to doing and following through on a daily basis.

So, I try to use every little action or activity as a potential ‘teaching moment’ to help Miss Cathy learn to strengthen her memory muscle and challenge herself not to become mentally complacent.



Come back Miss Cathy: Pt. lV

I called my brother, Tony (second on the Phillips Lifeline emergency contact list) after talking with Miss Cathy.

It was somewhat of a comfort to hear him say that he didn’t pick up the call (for the same reason that he didn’t recognize the number) either.

“Jeez!”, I thought, if this were a DC comic we’d have made shitty superheroes because neither of us was there to answer the “Bat call”…. Oh well, at least my misery has company.

Tony knew that I was prone to beating myself up for things that went wrong so he was especially compassionate (which is not his ‘go to’ emotion being a product of our upbringing and a former career Marine and but he can be counted on to provide a shoulder when needed).

We talked for a bit, letting each other off the hook as only people in a situation like ours can. As the conversation was winding down and I knew that I had to get to the others on the list I decided to ask him for his advice before I let him get back to his life.

Should I continue with my evening or go back to aid and possibly enable Miss Cathy?

Should I call Ron, the upstairs son (and the one who thankfully answered the distress call) and ask him to go down (again) and do battle for me (knowing that’s not his role, his job or his responsibility)?

I was (after all) trying to have a life of my own, outside of her many needs, thinking that I could (hopefully) address some of my own.

But now I couldn’t help but wonder about the validity and timing of the crisis.

While I always take mom’s condition seriously I couldn’t help but wonder out loud if sometimes her confusion and panic were ways to get attention. The number of times that she seemed perfectly fine (fine being a relative term when you’re dealing with Alz) before I left home but after I was gone was another story (usually ending with my premature return).

And (interestingly) after I returned (and she calmed down) she was (back to) as she was before.

Whether this was conscious or not I couldn’t say, nor could my brother but he’d noticed the same thing himself when he had to care for Miss Cathy. There did seem to be times when her reaction to a situation seemed to spiral out of control and stabilize only after she got what she wanted.

Tony agreed that it was a conundrum and said that I could go back and do what was needed or I could stay out for the evening. But, if I did stay out, I’d have to find a way to make peace with my choice and not feel guilty.

I realized after talking about the situation that it didn’t matter if the crisis was manufactured or not, the end result was that she needed help and I needed to respond.