Tag Archives: adult child of a parent

Playing the Alz card

Posted in October by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doppelgang-ette

Posted in October by

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

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

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

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

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

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

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

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

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

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

I see these women and I see Miss Cathy.

Dr Alemayehu Part ll

Posted in September by

Continuing with his exam, Dr Alemayehu asked Miss Cathy to spell “world” backwards.

“D, W,R,L….no, that’s not right.” Then she started over again.” D, L, R, R, O,W”

Nodding at her effort (but still making no judgment or comment) he said, “read these words for me” and then he had her repeat “apple, book and key” three times out loud before asking her to move from her chair to the examination table so that he could have a better look at her and administer a series of quick “hands on” tests that lasted about five minutes.

He had her open and close her eyes, follow his pen with her eyes only, tap her fingers then grip his hands firmly with hers and squeeze. After one of these texts he put his pen/pointer back in the breast pocket of his doctor’s jacket and asked.

“Do you remember the three things I had you repeat to me?”

“Yes,” she said, pondered, then started to recite,” Apple….uhhh, gosh, I had it right a the tip of my…..apple and key.”

Miss Cathy tried a couple of times to remember the third item, looking up and around the room as if it were somewhere to be seen, a visual clue somewhere in the small sterile exam room. Finding nothing to help here (and knowing that I’d be of no use) exasperated, she gave up.

After writing some notes in her file the doctor looked at her and reported, ”I’m very pleased with where you are, you remembered two out of three things. That’s very good.”

Hearing this unexpected praise she sat on the exam table, legs dangling in the air like a child sitting on a dock on a summer day who’s just received a Popsicle.

He told her that she could get down from the exam table and once they were reseated in their chairs the doctor asked if she had any questions for him.

Yes doctor I do, “Will the Aricept improve my memory?” she asked.

“No”, he answered, “it keeps your memory ‘where it is.” He went on to tell her that the Aricept buys a patient time because it manages to keep a person from progressing any further in the disease (for a while anyway, until it doesn’t work anymore) but the doctors have no way of knowing how long that will be.

“Will I be able to determine when my memory is failing me?” she asked.

“It’s a gradual process”, he explained, “and I cannot give you a time frame. But, I was concerned about your memory and after seeing you today I can tell you are in the same place you were when you came to see me last. So, your memory so functioning well.”

“Drawing the clock is abstract thinking, which is difficult but you did very well except for putting the numbers in the middle of the clock.”

“I’m very pleased with how well you’re doing so why don’t you come back to see me in six months.”

I helped Miss Cathy gather up her things and drove her back home where she couldn’t wait to get on the phone to call and tell all about her “glowing” report from the doctor.

Who could blame her for being ecstatic, a year ago we sat with the doctor at the beginning of her diagnosis and were full of questions and uncertainty. Six months after that we (all, as a family) had made adjustments in lifestyles and expectations as to what the future could hold.

And now we are in this holding pattern, a “grace period” if you will, life settling into the new normal with no idea when change will occur of how it will manifest. Until that day, Miss Cathy and I will just take it one day at a time and before you know it, another six months will have passed and we’ll be back sitting with the neurologist again.

Hopefully, she’ll be drawing clocks just as well and remembering just as much.

Dr Alemayehu Part l

Posted in September by

A Friday morning appointment with Miss Cathy and her neurologist, Dr Alemayehu:

“How has your summer been?” He asked her after we were seated in the examination room.

“Oh fine, fine”, she replied, eager to update him, “it’s been wonderful ever since you said that I could stay at home by myself; gosh, you don’t know what a blessing it’s been not to have to go anywhere when my son goes out-of-town. It feels wonderful so I truly thank you.”

“So”, the doctor said smiling at her, “you’ve declared your independence! Well, that’s very nice, I want you to know that I prayed for you.”

“Did you, oh bless your heart, thank you doctor.”

“Now”, he said suddenly becoming more doctor and less old acquaintance, “ I want to ask you a couple of questions.”

“How do you function? “How is your memory?”

“Well”, she said,” I do alright, but I get nervous.” When he asked what she meant she told him about the earthquake and having to go to the emergency last month because she was so upset over her granddaughter being in the hospital.”

He listened but didn’t comment right away, then he said, “I want you to take this pen and paper and I want you to do something for me but I want you to listen carefully before you start.”

He told her that he wanted her to draw the face of a clock and to put in the numbers where they should be, then put the hands of the clock on 10:45. Satisfied that she understood what he was asking of her he got up from his seat and left the room.

I looked on from my chair in the corner as she drew the circle, then the number “6”, then the “12” and the numbers 1 through 5 down the right side of the clock (pretty good so far) then she put the number “9” almost in the center of the circle and the rest of the numbers were in the right order but they were more or less vertical instead of following the left curve of the circle that represented that side of the clock.

“What time did he say,” I heard her ask herself,” was it 10:45 or 11”45?” Then she looked at me and asked me, “What time did he tell me-11: 45?”

I mimed zipping my lips and she said, “Come on now, hurry up and tell me so we can get out of here.”

“No can do,” I said, “ It’d be like helping you cheat on a test.”

Since she drew a very short hand that went from the middle of the clock to the eleven and another verrry short hand that pointed toward the nine it was hard to tell what time she was trying to indicate. But when she was finished she wrote “11:45” at the top of her page so that her intent wouldn’t be misinterpreted.

Dr Alemayehu came back into the room, sat down in front of her once again and studied her drawing. “Do you think this right?” and when she said she thought it looked like a clock he said, “ I’ve never seen a clock with numbers running up the middle and the time was supposed to be 10:45.”

But he seemed satisfied (enough) with the drawing so he continued with his questions.

“What floor are we on?”

“First”

“”What kind of office is this?”

“Neurology doctor”

“What’s the date?”

“Eight, August, twenty-eleven.”

“Who’s the President?”

“Dr….uhh, Obama.”

“The one before?”

“Oh, I will never forget him-Bush.”

Then he showed her the word “world” written out on a piece of paper and asked her to spell it backwards.

Next week: Part ll

This ‘n That ll

Posted in September by

Routine and structure seem to be the anchors that ground a person with Alzheimer’s and this is definitely true of Miss Cathy. She has a set routine and it (more or less) seems to work for her on a daily basis. Most days she’s content with being at home, talking on the phone, taking her nap and watching television. But even within the confines of that familiarity there are the occasional mood swings (usually misplaced anger) that can erupt within the course of a routine day and they are (still) surprising and hurtful but (now) it is about as bad as an unsuspecting pinch on the arm.

I’ve noticed that having a routine can be a double-edged sword because with each day being the same it becomes hard for her to distinguish one from the next. So, occasionally she will forget what day it is but let’s face it, who wouldn’t-living like one of the characters in the movie “Groundhog day”.

Days when she has to venture outside of the condo like a trip to the doctor’s office or to the market can be very stressful for her. Even after a seemingly good day, being out with her girlfriend, Adele she’ll come home pretty much worn out (no matter how “good” a day she’s had). More often than not she’s visibly drained, agitated, and grumpy, leaving me to wonder sometimes how long it will be before she stops venturing out all together.

She does like to busy herself with “projects”, some big, some small. It could be anything from organizing her calendar to going through old paperwork or looking through her closets to find things to donate to charity.

Miss Cathy doesn’t want for much and seems to me to be content to complain just for the sake of hearing her own voice most of the time (and that’s cool, because most of the time I’m only half listening anyway).

Lately thought I’m finding that she will start a project but I’m the one who ends up finishing it, or if I don’t have to finish then I need to make sure that the project’s completed and there are no loose ends to tie up.

The other day I came into the living room to discover that she’d “re-potted” a plant but when I looked down into the new, larger pot I could see that she’d done no more than stuck the plant (crooked) in the larger pot, leaving the roots exposed.

When I called this to her attention she said, “I know, it needs some more soil to fill it in but the bag was too heavy.”

I’m thinking, “Okay, that makes sense but the bag has always been heavy so why even bother?” Unless of course she knew that I would have to finish re-potting the plant in which case that would make her a pretty clever duck.

I’m Okay, You Okay? Part ll

Posted in September by

I was on my way out the door but feeling uneasy about leaving Miss Cathy by herself, even thought the earthquake had long since passed. I had my metro card in one hand and the other reaching for the doorknob. I knew I’d heard what I wanted so that I wouldn’t feel guilty but I also knew that my gut was telling me something else and I’ve learned (after so many times of not listening) that “gut” trumps whatever I’m thinking so I said, “You know what, I’m not going to work, I’m going to stay here with you.”

Although she said she’d be “fine”, I could see that Miss Cathy was visibly calmer.

I put my shoulder bag down and went to call my boss only to discover that my cell wouldn’t call out (still not realizing the extent of the damage done by the quake). But I realized that I could still text so I sent him a message, changed clothes and joined Miss Cathy on the sofa to watch the news coverage.

We sat watching the television as the full scope of what occurred unfolded before our eyes; there was no loss of life (yet reported) but the quake was felt from the Carolinas up to New Hampshire with varying degrees of impact depending on where you were. Every federal building in Washington DC (where I was headed) was evacuated and most businesses shut down for the rest of the day. The metro (which I would probably have been riding into the city) was slowed down to 15 miles an hour so they could check all tracks for damage. I listened as the newscasters did there best to report the news “ live” without the teleprompters to give them the cool, impersonal polish they usually have during regular broadcasts.

I text’d family and friends asking how they were (if they were on the East coast) and to let them know that we were okay.

One of the reporters commented that we’re lucky to be living in a time when technology has advanced to a place where even if land lines were down and you couldn’t get a strong enough signal on a cell phone to call, one still has the ability to communicate via text. To illustrate his point the camera pulled back and you could see most people on the streets were busy texting on their cell phones.

The same was not definitely not true of the earthquake in I experienced in Manhattan in the early 1980’s or even ten years ago when I was still living in New York City on 9/11. I don’t think I had the ability to text on my phone that day or if I did it was so new (to me anyway) that I didn’t know ‘how’ to text. No matter, the events of that day are buried deep, no need to dredge them up now, suffice to say, I don’t think texting was as prevalent as it is now.

I sat next to Miss Cathy wondering, “what was I thinking?” to even debate whether or not to leave her alone. I was disappointed in myself that my first (and only) response wasn’t to stay and support her. And (during the quake itself) when my first instinct was to make sure my IMac didn’t topple over (granted I was standing right in front of it) instead of immediately rushing out to take care of Miss Cathy, I had to wonder (again) if I’m seriously cut out for this job.

I’m like that overwhelmed parent that leaves the baby in the car seat “on top” of the car and starts to drive away before realizing that ‘something is missing’ AND then remembering his primary obligation and purpose.

I hope whoever is keeping score won’t deduct too many points from me for that day.

I turned and asked how she was doing and she said, “I was heading into the bedroom to take a nap when it happened but I’m wide awake now.”

“I guess that earthquake fixed you for sleep”, I said smiling.

Miss Cathy said that ‘if’ it happened again she would go downstairs to a neighbors apartment. I told her that the best place to be if an earthquake ever happened again (and I’m not around) is to move away from all windows, especially the sliding glass doors, and stand under a doorframe in the back of the apartment.

I held her hand and made her promise she wouldn’t go outside the apartment and risk falling down the stairs. I told he that her balance isn’t good on her best day and in a panic with the ground moving it was a recipe for disaster.

She promised she would heed my advice (but she also promised to stop talking on the telephone in the living room while she was cooking) so I knew to take any pledge she made with a grain of panic.

The phones were back in service an hour or so later so mom jumped on the horn to call family and friends, expelling some of her nervous energy.

I took the time to go back to my room to do the same. The news reports said that the last earthquake to hit anywhere near Washington, DC was more than 100 years ago-an amazing little factoid.

Less than a week later most of the East coast was battened down bracing for Hurricane Irene. Again, we were spared any major damage by the time it hit our area as Irene had been downgraded to a tropical storm but holy moly-that’s a lot of Mother Nature for one week!

Since there had been so much coverage on the weather channel about the impending hurricane Miss Cathy was mentally fully prepared. She wasn’t nervous at all, just concerned as she watched the coverage.
Hurricanes and earthquakes can be traumatic for the most stalwart of us, making it all the more difficult for anyone with cognitive and/or behavioral issues. Special attention must be paid during and after to keep them calm and to explain the unexpected in a manner that is reassuring to them in a way that they can understand.

The experience taught me that like other aspects of our life living with Alzheimer’s that have had to be adjusted, it’s best to be prepared in the event of a natural disaster and I found some great tips on the Alz.org website at: http://www.alz.org/nca/

So, thanks to what I’ve learned I’m okay. Do yourself a favor, learn what you can do so that you’ll be okay, too.

I’m okay, You Okay? Part l

Posted in August by

Standing in my bedroom I could sense “something” coming before I could see or feel it. I guess it’s kinda like the intuition that animals have before something bad in nature occurs, only I’m not feral enough to know what it means or when you’re suppose to run.

Before I could make sense of what was happening the room started shaking and everything around me was moving; the walls, the floor, all vibrating as if it were an everyday occurrence and it was the room’s time to come alive. A lamp on a bookshelf across from me started to fall and I knew that I couldn’t reach it in time but I instinctively reached out to steady the things nearest me as I watched the lamp tumble and bounce for a second or two as the floor moved beneath me.

I stood there, staring at the lamp; the shade crooked, at an odd angle, like it was a person who’s neck had been broken in a fall. Suddenly, pulled out of my dark reverie, I remembered that there was something more important than the lamp or the objects I was holding so I started down the hall to find Miss Cathy.

In the few seconds it took to reach her in the dining room all was calm. I could see that she was visibly shaking as she asked, “What was that?”

“It was an earthquake”, I said plainly, her reaction clearly that of someone who didn’t quite believe what she’d just heard.

I couldn’t blame her really; it’s not the first thing you’d think would be happening, this wasn’t Los Angeles or San Francisco, we were on the East coast, very close to Washington DC where we only read about such occurrences. The only reason I knew with any certainty was because I had experienced an earthquake before. It happened in New York City in the early ‘80’s when I lived on the fifth floor of a six-story apartment building in the East Village.

It was the middle of the night and I remember waking up to what sounded like a loud crash, I thought a semi or some other large vehicle had slammed into the side of our building, that would “explain” the noise but then the entire apartment started to shake. I held onto the bed for dear life not knowing how to process what I was seeing and feeling.

It ended almost as soon as it started but those seconds felt like hours while it was going on, after the vibrations and sound of things falling and shifting there was an eerie quiet that (to me) rang in my ears as loud as the quake itself. There was no major damage from that quake but it was recorded at 5.0 and something that hadn’t happened in New York in more than a century.

Although I didn’t know the official number for our area (yet) it definitely felt a lot milder than what I’ve experienced before. But, being as it was mom’s first quake it didn’t matter if it registered as 1.0 or 10.0-it was just as upsetting.

My instincts told me that the worse was over so I got Miss Cathy settled on the sofa and I walked back through the condo to check to see if there was any damage. I “right-ed” pictures that were askew and picked up objects that had toppled over.

I received a text from my ex, Chad asking “U ok?” and I text’d back, ”I’m ok, u ok” not knowing if he-in the Midwest (or the entire country for that matter) had just experienced the same thing. He’d contacted me so soon after it happened here that I just assumed the same thing was happening to him (later he told me that he was in his car when the news came on the radio so he text’d me right away concerned about Miss Cathy and me).

I rejoined mom in the living room and watched the TV with her. The news reporter announced that a earthquake had just hit a majority of the East coast, registering 5.9 at the epicenter in Mineral, Virginia, about 80 miles away from where we lived. Miss Cathy (now convinced) sat in amazement, digesting what she was hearing and seeing.

“I thought something was going on upstairs in Ron’s apartment.” she said, “I heard this rumpling sound and I looked up at the ceiling fan and I thought it was odd that it was shaking so I thought he fell or dropped something heavy up there to make it move like that.”

She tried calling his apartment but the phone wasn’t working.

Looking out the sliding glass doors that lead to the balcony I could see that neighbors from the apartment complex across the parking lot were streaming outside, coming together as people seem to do when a common experience occurs, huddled together trying to make sense of what had just happened.

“I’m just so nervous, I can’t stop shaking.” She said, “ I didn’t know what in the world was happening, how did you know it was an earthquake?”

I reminded her of my long ago experience in New York and how it’s such a strange feeling that once it’s happened you never forget it.

She seemed to be handling it all pretty well, I thought. I was concerned about her shaking but I wondered if that wasn’t adrenaline-you know, the whole “fight or flight” feeling that takes over our bodies when situations are “heightened” (as this was pretty “high” on the list of things that had happened to her lately).

I asked her if she wanted a glass of water and sat with her after she declined the offer. Given how she’d reacted to recent doctors’ appointments and other mood swings, I have to say (other than the shaking) she was calmer than I thought she’d be but I was no less worried about her. There wasn’t much I could do for her besides sitting with her but sometimes that’s enough.

I had been getting ready to go to work when the quake hit so I got up go back into my room to finish getting dressed. I asked Miss Cathy if she was all right and if she wanted me to stay with her.

“No, I’ll be alright,” she said, “I’ll get myself together after a little while. That’s not going to happen again is it?”

“No,” I said, “probably not, but there are usually aftershocks can come after the initial quake but they’re usually much milder.”

I could see that little factoid didn’t give her much comfort but I had to finish getting dressed and I kept reminding myself that she said she’d be “alright” (I kept repeating this assertion to myself to assuage any guilt I was feeling about leaving her alone).

I must have asked her “are you sure you’ll be alright, I don’t have to go to work, I can stay here with you” half a dozen times. Each query seemed to receive the same tepid “I’ll be fine.”

I picked up my bag and headed for the door going over my rationalizations for leaving
(against a gnawing in my gut that I should stay), using “I’ll be fine” as the green light to go.

It’s interesting isn’t it how we ask a question not wanting an answer so much as permission to do whatever it is that we know we shouldn’t but we’re not quite ready to take ownership of the action, instead, “asking” absolves us of any responsibility for that which we know we shouldn’t do.

Next week “I’m okay, You Okay?” Part ll

Paper Chase Part IV

Posted in August by

“Okay,” Cheryl, the lawyer replied, satisfied with Miss Cathy’s answer to her query as to why she thought she was there, meeting with her. She went on to ask mom question after question about what she wanted done with her condo and her belongings. Everything she asked were all the things that Tony and I had gone over with her weeks before but I’m assuming she needed to ask Miss Cathy so that she could hear the words come out of her mouth just to be clear that mom’s wished were being carried out and she wasn’t being taken advantage of.

Then Cheryl asked, “Can you tell me what’s been going on with your health.”

“I’ve got diabetes,” answered Miss Cathy.

“Okay,” Cheryl said, taking copious notes, “ what else.”

“I’ve had a left knee replacement.”

“What else.”

“I have high blood pressure.”

“Okay, what else.”

I could see that Miss Cathy was perplexed, she looked like a little school girl who had successfully named all the letters of the alphabet but the teacher was asking for more so the poor student was wrecking her brain trying to think what comes after “z”.

Tony and I looked at each other knowing what Cheryl wanted to hear but didn’t want to appear as though we were “leading the witness”; finally I looked at Miss Cathy and said,
” Why do you see the neurologist, Dr Aleymahue?”

“Oh yes,” she said, eyes bright because she knew the answer and wanted to get a gold star,” I have dementia and Alzheimer’s.” (Talk about burying the lead!)

Satisfied with Miss Cathy’s answers about her health, Cheryl wasn’t quite finished though, she still had more some questions for Miss Cathy to answer, pen in hand ready to write down everything she said. “What does Ty do for you?”

Now you could see that Miss Cathy was warming up to the subject and she almost gave winked at Tony and me to let us know that she remembered what we’d talked about with her in the kitchen earlier that morning to ‘prep’ her.

“He’s a great help to me,” she started, “he cooks my breakfast.”

“What else..”

“He helps me when I take a shower, he makes sure that I don’t fall.” The back and forth went on as mom told Cheryl what I did to help her during the day. I could see that she was very proud when she said, “He comes in and turns off the TV and light for me at night when I go to sleep.”

Nice as it was to be acknowledged for that, I knew Cheryl was looking for something a little more substantive to help mom apply for a caretaker exception for her Medicaid application, but (to her credit) Cheryl was patient and kept on asking the same question, “what else” until Miss Cathy offered up more relevant help like the fact that I dispense her medication and help her with her daily blood sugar test (that included taking a blood sample and reading the meter.)

Finally Cheryl seemed satisfied that mom was acting of her own free will so moved on and opened up a new folder (one of many that she had fanned out in front of her at the conference table that represented the various programs and procedures that we were undertaking.) She passed the applications forms to me then and then she went over the documents needed to apply for Medicaid, to set up a Personal Caregiver Agreement and a possible assistance stipend from the Veterans Administration program set up for widows of war veterans.

I’d handed over copies of the dozen or so documents that Cheryl requested that I bring for the meeting. She noticed that a copy pop’s birth certificate was not in the pile and I explained that he was born in 1923 and the hospital he was born in burned down decades ago and the all the records were lost.

“Mom did write to the courthouse of the town where he was born to get something in writing stating that the hospital burned down but we can’t find that document,” I said by way of explanation.

She said that it was imperative that we find the letter that verified his birth because without it (even though we have his social security card and discharge papers from the VA) she was afraid any application we submited would be rejected or sent back until they had everything that they asked for.

Cheryl told us that she’d need a couple of weeks to draw up the papers for Miss Cathy to sign (after she had a copy of the missing proof of pop’s birth). Then she gave me a form (Yikes! another one) for Miss Cathy’s family physician to fill out for the Maryland Medical Advisory Board to ascertain her eligibility for assistance as a person in need of a caregiver not living in a nursing home.

As we were wrapping up the meeting Cheryl made a point of telling Miss Cathy that even thought Tony was paying the legal bill and he and I were acting on her behalf that she (Cheryl) was Miss Cathy’s lawyer and her allegiance was to her alone and not to us.

Cheryl and Tony left to take care of payment leaving Miss Cathy and I in the conference room alone for a few moments.

“You did very well,” I told her. I didn’t have a gold star but I did say, “I’m proud of you.”

And I was, too. I knew that her natural inclination when being asked about her health is to say, “I’m fine” and to tell whomever was asking how independent and self-sufficient she is. So, I know it was hard for her to list her ailments and to even suggest that she needed help (in any way).

But, she knew how important this was and even though she’s telling the truth it isn’t the truth she tells herself on a daily basis.

I’ve yet to hear her tell any of her friends or a stranger for that matter that she has dementia (not willingly anyway) and though she’s grateful for my help it’s nothing that she readily discusses and in her mind I’m living here with her mainly because of her ‘knee replacement’ and balance issues.

“Thank you,” she said. ” She seems very knowledgeable, you guys have done a great job putting this together. Man, this is a lot of work, isn’t it?!”

As we rose to leave the office I knew that we were still at the beginning of a long process, and there’s no way we’re going to have an incomplete file now, not after coming this far and all the hard work it took finding all the documents we did have (not to mention paying the lawyer a hefty retainer.)

I knew that we’d looked for the letter confirming pop’s birth in Virginia (the correspondence dated back to the 1970’sfrom what I remember seeing) in Miss Cathy’s extensive files that she kept (and to her credit she pretty much has every legal document necessary and almost always knows where it is stored) but for some reason this particular letter wasn’t where it was suppose to be…we need to find it so the paper chase continues for one more document.

Post script: Miss Cathy hunted for the document for two days like a woman possessed and she found it. The official document was photo copied and mailed off to the lawyer to be included in one of many filings that were to go out after we returned to sign the various documents….more on that as “Paper Chase” continues in Part V

Paper Chase Pt lll

Posted in August by

“So, the way I see it, we have three things that we want to accomplish in the meeting with the lawyer,” I said, by way of beginning my prep with Miss Cathy for the meeting with Cheryl Henderson later that afternoon. The day had finally arrived when all of the research, preparation and paper work would come together so that we could finally start the process of getting mom’s (legal) affairs in order.

“The first thing is to get the clock started on Medicare.”

“Medicare?” Miss Cathy queried,” Don’t you mean Medicaid?”

“Right, right”, I said dismissively, eager to get back to my larger point, “Medicare, “Medicaid-I just got them confused, you know what I’m talking about.” I started to continue to outline what the meeting was about but Miss Cathy was having none of it.

“Well, it’s important to say what you mean, I just wanted some clarification.” Sounding like the elementary substitute teacher that she was after she retired from thirty years working with the federal government.

“Okay, but you know what I meant, so can you do me a favor and let my mistake slide, I’ve got a lot of other things on my mind so can you not ‘nit pick’ every word.”

“Why is it that you get to question me but I don’t get to ask you anything?” she shot back, clearly not in a mood to be conciliatory.

“Jeesh, are you really going to start this now?” I thought to myself, “I could be back in New York right now doing something fabulous but I’m here like a good little secretary with my notebook and pen, doing my best Roz Russell impersonation trying to get you ready for a meeting with a lawyer about your “shit” (not mine) and you’re going to play “tit for tat” with me today? Really?”

But, as frustrated as I was she did have a point and I had to acknowledge it so what I said was, “you know what, you’re right, it doesn’t seem fair, you should get to question me as much as you want but we don’t have a whole lot of time before we need to leave and I’m just trying to get through this before we have to go. So, can you do me a favor and just let “one” slide and not correct me every time I say something out of turn when you know what I’m talking about.”

“I don’t like your tone.” She said.

“Okay, I’m out.” I said closing my book and putting my notes away,” I’m going to go take a shower and maybe we can start over again later.”

“Good, you do that,’ she said, “maybe that way you can take some time to get yourself together, it seems to me that you have a little attitude.”

“Jesus Christ”, I muttered under my breath (but loud enough to be heard) as I walked out of the living room.

Tony sat on the couch during this little exchange watching us morph into George and Martha from “Who’s afraid of Virginia Wolff’ without saying a word.

I took a shower and rinsed away any resentment that was building up in me and came back into the kitchen ready to move on. Miss Cathy was cooking breakfast and Tony was keeping her company.

“I want to talk to you when you get a minute”, I heard her say in my general direction, her back to me but I could tell by her tone and the way she kept her back to me that she was as hot as the skillet on the stove.

“Okay, shoot.” I said and sat down and listened as she told me how she felt disrespected and how angry she was. “I don’t like the way you talk to,” she said,” and I will be respected! Now before we go in there and change things you better make sure that you want to be here because you can always go some place else.”

“Wowsa!” was all I could think. Her telling me that ‘I was unhappy’ and ‘could leave anytime’ was turning into a recurring theme lately, but I chose to ignore that and focus on what was more important and that was the fact that she was upset and I’m the one that made her feel that way. I told her (quite sincerely) that I did respect her and the last thing I wanted was for her to get upset and for that I was truly sorry.

“You know, I’ve got to tell you something, I know I’ve told Tony and a few other people but maybe I never told you but I’m the one that chose to be here, nobody asked me too, not you, not Tony, no one-it was my idea and I haven’t regretted it for a one minute. There are a few things that I know for sure and I know that at the end of my life I will always remember making the decision to come stay with you as one of the best things I’ve ever decided to do in my life.”

I looked over at her and I could see that she heard me, that she needed to hear me say that.

“Well, okay,” she said and just like that the storm passed as quickly as it came.

“Do you want eggs to go with your scrapple?” she asked.

After breakfast we finally settled back down in the living room to discuss what she could expect in the meeting. I told her that it was important for her to give the lawyer the impression that what we were doing was ‘her’ idea and that she wasn’t being coerced or manipulated by Tony or me.

Part of the reason for prepping her was so that we could rehearse what she needed to say and tell her what the key points were and hopefully keep her from rambling off topic.

She seemed to understand what we were doing, especially after we stressed that all the preparations for long term care in a nursing home were for ‘down the road’ and that nothing that we talked about would change her life now (or for a long time hopefully).

Tony and I both knew that any talk about ‘nursing homes’ had the potential to get her agitated and upset and we wanted her to be calm for the meeting and to not act like we were conspiring to ship her off to a home and run away with her money. We talked for a good forty minutes or so; entertaining her questions and making her feel as comfortable as we could about everything. She seemed satisfied with what we’d discussed so we set out for the short drive to College Park, Md where the lawyer’s office was located.

Seems like every time I’ve been to Cheryl’s office I’ve always got someone else with me, first it was just me, checking out her seminar, then I came back for a consultation with Tony and now Miss Cathy was with us as the secretary ushered us into the now familiar conference room.

A few minutes after we were settled in our seats Cheryl Henderson, the lawyer walked in and introductions were made. Cheryl greeted Miss Cathy warmly and gave her a hug, and then she looked at me and said, ”Where’s my hug?”

I’m not much of hugger, especially in a business setting but ‘when in Rome’ ….

With everybody hugged and seated we could finally begin. The next hour or so pretty much revolved around Miss Cathy (as I thought it would). On one hand it made sense to prep mom beforehand so that she’d have an idea of what to expect and what to say but in the final analysis it really didn’t matter because her short term memory is so spotty that it’s a crap shoot whether she’ll remember what we discussed and rehearsed so you really just genuflect and hope for the best.

It’s not like she was being interrogated but Cheryl was pretty much focusing all her energy and conversation on Miss Cathy, she’d heard from Tony and me already and she knew what we wanted (on mom’s behalf); now she wanted to hear it from Miss Cathy herself.

I sat silently and tried to look supportive as Miss Cathy answered the questions asked, sometimes faltering but always charming and trying to please. I could see that at times the questioning was getting a little overwhelming but she didn’t complain or get irritated.

“Do you know why you are here?” Cheryl asked.

“Well”, Miss Cathy said hesitantly, then she sat up in her chair more confidently and answered, “I’m here to get my affairs in order.”

Next week, part IV

Happy Birthday

Posted in August by

Miss Cathy’s birthday was on the 23rd of last month; it was a god awful, hot Saturday so I told her that I would take her out for a celebration lunch the following Monday. The week ahead was predicted to be hot, but not the African heat we were experiencing. I know that she doesn’t particularly like going out to restaurants but every now and then she’ll go and she’ll actually enjoy herself. It’s a trade off really-she doesn’t like to go out to eat and I don’t like the places that she picks when we do go.

I know that she likes the “restaurant” Ruby Tuesday (a glorified McDonald’s with table service if you ask me, but hey, she likes the joint) so that’s where I planned to take her. I asked our upstairs neighbor, Ron to join us. He’s more than a neighbor, she considers him one of her many “sons”. For many years while I lived other places he would come down and keep her company, run errands for her and was always there with a gift on Christmas, mother’s or her birthday.

So, he’s a great guy and I’m grateful for him being here for Miss Cathy and although she and I had been getting along it’s always nice to have a “buffer”.

Monday rolled around and I reminded her around 11:30 am on my way out to run a few errands that we were going to lunch soon and she said, “Oh, is that today? I thought it was tomorrow.”

“No,” I said, “it’s today, but we can make it tomorrow if you’d rather go then.”

“No, no”, she said, “today is fine.”

By the time I came back a little before 2:00 pm she was sitting in the living room dressed in a smart summer outfit; black top, black pants, white jacket with black piping and a smart, white summer hat to match. I was in cargo shorts and a tee so I showered and changed into a dress shirt, jeans and seersucker blazer to match her festive attire.

Ron drove so I sat in the back and let the two of them gab in the front seat. I tried not to listen but I couldn’t help but hear them talking, especially how she tended to cut him off and not let the poor guy finish a thought or answer one of her many questions. At one point she said, “It’s awful quiet in the back, jump in whenever you want Ty.”

“I’m just waiting for a pause in the conversation”, I said and went back to looking out the car window (what I was hoping for was a moment of silence but it wasn’t my birthday so no point wishing for that gift).

When we arrived at our destination we discovered that the Ruby Tuesday had moved from that location so we ended up at a Red Lobster nearby after Miss Cathy said that she liked seafood. The Red Lobster, to me, is to seafood what The Olive Garden is to Italian food-a place for people that “don’t know no betta’”.

They’re both places that say they’re “of/for/and about” a particular cuisine (and I use the term “cuisine” broadly) and they have the pictures on the menu to proof it, but anyplace that has to show me the food needs to spend less time in the photo studio and more time in the kitchen.

When we were settled into the booth of the restaurant with our oversized, picture book menus I asked Miss Cathy what looked good to her and she said she wasn’t very hungry, that she’d eaten two hot dogs at home waiting for me to come back from my errands.

I asked her why she ate if she knew she was going out to lunch and she just shrugged. Thankfully it didn’t stop her from ordering or enjoying the time we spent together which was the point after all.

What came to the table was an orgy of food; shrimp, scallops and various other former creatures of the sea, laid out on platters dripping in butter, cream sauce and/or batter dipped. It looked less like seafood and more like a heart attack with biscuits on the side but Ron and I ate with gusto and I asked for a doggy bag for Miss Cathy.

She seemed to have a good time, never at a loss for something to talk about. Back at home she opened birthday cards from family and friends and proudly displayed them in the living room.

She’s seventy-three now, which isn’t old these days (I keep reminding her that “seventy is the new sixty” but she didn’t get that memo, for all intents and purposes she acts more like someone ten years her senior-that’s just who she is, it’s as if one day she decided that she was “old” and that was that).

But, she doesn’t want for much, just to be home and not to have to go anywhere. So, I have to remember that the best gift I can give her is the security of knowing that she’s safe at home where she wants to be and she doesn’t have to worry about going anywhere much or doing anything other than what she wants to do.

Happy Birthday Miss Cathy.