Tag Archives: alzheimers

Word(s)

Posted in October by

I am someone who loves to talk, ask any of my friends and they will confirm this about me. I know that I inherited this trait from Miss Cathy, unlike my brother who is what I would call a ‘minimalist’ where conversation is concerned. My mother loves to talk and I grew up ‘loving’ to listen. There wasn’t a topic that was taboo; sex, politics, sexism, racism, feminism, growing up poor in the south and the world at large. There was little she didn’t have a strong opinion about and wasn’t afraid to express it.

I remember I would always volunteer to help her with the Sunday dinner, because I knew that it meant hours of uninterrupted entertainment. I was her eager sous chef, pressing an old jelly jar into dough to help make biscuits along with some other minor duties as she spun tales.

Nowadays things have changed and talking with Miss Cathy is not the same. Of course I’m not a child anymore and I’m no longer eager to learn about life through my mother’s stories. I’ve long since ventured out into the world and now have my own tales to tell.

Not that she’s any less entertaining or as insightful as she always was-she is, it’s just that since her diagnosis there has been a noticeable change in the rhythm and/or the course of her conversations.

I’ve noticed that over the past few months that each time you talk with her you don’t know if or when the conversation will go from the norm to a game of “what’s ‘that’ word I’m looking for?”

It doesn’t really matter what she’s talking about, usually she’s trying to get me interested in the latest bit of gossip about a relative of unknown origin (not that she doesn’t know who they are-believe me she does, it’s just that the blood lines are sometimes so convoluted that I stop listening, hence the title) and I’m about as interested in the conversation as a four-year old is in Nuclear Arms dismantlement.

But, you can’t ‘not’ listen, and somehow you get sucked in and just when I’m about to find out why Aunt Whoitz and Aunt Whatitz hate each other (this week) suddenly, without warning Miss Cathy would stop interrupt her own story and say, “Shoot, what’s that word I wanted to say?”

While she looks around the room as if the word is hiding behind a chair I start ‘free associating’, saying anything that comes to my mind, “uhh,.. move, blow my brains out, slap myself unconscious, move”

“No, no,” she’d say, “that’s not it. Darn, what was I talking about? Oh yes, now what was I trying to say?”

And so it goes, if she didn’t find her “word” we’d either move on to another topic (meaning another relative) or that would be my cue to escape to my room. Sometimes she’d actually find the word, sometimes in the moment and sometimes in the middle of another story.

Oftentimes though, the word is just…gone and her reaction is usually frustration and anger. I’ve found that her emotional reaction varies depending on her overall mood or the time of day. She’s not a “Sundowner”, a person with Alzheimer’s whose symptoms seem to deteriorate as day turns to night. No, it just seems to me that if she “loses” a word in the evening she’s more apt to be more upset because it’s the end of the day and she’s already tired.

Her stories may not fascinate me as they once did, but I still try to listen, even though I‘ve heard most of them more times than I care to remember but now that I think of it that could be a good thing because as she loses a word here or there I’m more apt to be able to pick it up and give it back to her.

So, her words may not be lost after all, she’s just didn’t realize that she gave them to me.

Ahh-choo

Posted in October by

I was sick with a cold most of last week and have just come back to the land of the living.

At the first sign of my cold Miss Cathy started to hover, trying to mother me but I shoo-ed her away with my best, “It’s only a cold”, telling her that I’d be fine once it’d run it’s course. After all, it was only just a cold. I’m lucky that I’m in reasonable health and not plagued by the usual maladies, aches and pains that a lot of my contemporaries have.
After all, I’m fifty-two and that is an age where the body starts to betray us if we’re not careful.

I’m used to living alone and this was the first time in a lonnnng time that someone has been around to witness every sniffle and see the trail of discarded, crumpled, pieces of toilet paper that I use to blow my nose and leave wadded up in my room on tabletops, the bed, the desk or any other surface I happen to be near at the time, stopping to picks them up much later when they look like faded, white flowers littering my bedroom.

Disgusting I know but that’s ‘single person’ behavior-when you live alone (no matter how fastidious, neat and tidy one might be otherwise) a cold is when (for me anyway) my inner “Oscar Madison” comes out (the slob half of Neil Simon’s “The Odd Couple”).

I don’t think I’d been sick around my mother since I was a teenager so I’d forgotten how she behaves. In the last year I’d grown accustomed to my role of taking care of her so it was odd to be in a position where she was back in her role as caregiver to me.

Don’t get me wrong, there’s nothing wrong with having Miss Cathy take care of me, what adult doesn’t like to return to childhood (if only for a moment) and be doted on by a parent, taking you back to the days when you didn’t have a care in the world and you knew because you were sick that whatever you wanted only had to be asked for.

But, life as I know it is now is focused on me taking care of her and (hopefully) making her days as carefree as possible.

Besides, what was okay at six or even sixteen isn’t as easy to accept on this side of life, that awkward age when at fifty-two you’re no longer middle aged (how many one hundred and four year olds do you know?) and you’re not quite “old” –yet, and your seventy three year old mother is futzing with your pillows and insisting that you eat and drink when all you want to do is curl up into a ball and die (in between blowing your brains out into toilet paper).

Add to that Miss Cathy bringing me concoctions like hot tea with orange juice. After I took a few sips of the god awful brew I asked her what was in the tea and she replied, “I didn’t have any lemons so I added the orange juice because you know, orange juice is good for you when you have a cold.”

Ye, I agree. But not together-hot!

Then there were the times that she woke me up-just to make sure that I was sleeping (as apposed too?….I know I’m her baby boy and everything but the possibility of me being a victim of SIDS is long past.)

And there was the trepidation I’d feel whenever she’d come into my room with a tray carrying a bowl of “Chicken soup”. I could never be quite sure what she may have added to the broth-it’s not like I was expecting dead rat over rice under the cloche like in “What ever happened to Baby Jane?” but still, there were some questionable ingredients in her soups-like whole cloves of garlic (to open up my sinuses or to ward off vampires I guess) and in the same bowl there might be noodles and rice-starch much?!

But, I drank her tea (or as much as I could stomach) and I ate the food that she brought me because I could see that she was enjoying the role-reversal-and believe me without her help I probably would have been sicker a lot longer. I think she felt good to be back in charge and not the person waiting for their pills, meals or to be helped in the bathroom.

For a few days she got to be who she used to be for me; my protector, provider and confidant and I gotta say, that was worth a few sniffles.

Out with the old-in with the (not quite) new

Posted in October by

One day I found myself standing in the small appliance aisle at Target shopping for an electric can-opener. We needed a new one (again) because Miss Cathy had gone through two since I’d moved in-not mention the two hand-held can-openers she’d also broken.

The latest malfunction occurred when she tried to open a can with a flip top lid. I was in my room working when I heard a horrific noise (it sounded like a couple of drunken cats singing through auto-tune). At first I ignored it but couldn’t the second time and went into the kitchen to investigate.

When I entered the room there she was, standing with the mutilated (and unopened) can in one hand and a perplexed expression on her face. I took the can from her, pulled the flip top lid and poured the contents into the waiting saucepan on the stove top.

“You can’t try to open cans with the electric can opener that already have a flip top,” I explained to her. “See, it’s even got a graphic on the top of the can. It’s a drawing of an opener inside a red circle with a line drawn through it to tell you not to use a can opener.””

“Oh, is that what that is” she said unfazed, stirring the sauce with a wood spoon,” I couldn’t tell what the was without my reading glasses on.”

“Well, that’s it for this can-opener.” I said as I unplugged it and threw it in the garbage can before going back to work in my room.

So, that’s how I came to be standing in this century’s version of “Woolworth’s” about to pay another $25.00 for a small kitchen appliance that had about as much chance of seeing in the New Year as an open bottle of good champagne.

Then suddenly, out of nowhere, I found myself putting the Hamilton Beach product back on the shelf, leaving the store and driving to one of the second-hand stores that I scavenge for the occasional mid-century piece of furniture or object d’art.

It’d dawned on me standing at the register in Target that I’d spent about $75.00 on electric can openers since I’d moved here over a year ago (and I’d yet to replace the skillets and saucepans that Miss Cathy had decimated-usually by forgetting that the burner was on high and walking away, scorching the pan-not to mention burning whatever was in it. And there was the ruined Teflon surfaces that she’d scratched up using silverware or other metal to stir or turn the food in the pans).

I’d realized that it was getting pretty expensive to replace things around the apartment and if I’m here for the marathon I’d have to pace myself financially to go the distance.
The appliances, the cookware…. the telephone, it was all just more collateral damage of the disease.

That day in Target I’d come to realize that places like the Goodwill, Valu Village and other second-hand stores are gold mines for the things that I needed as well as the fun things that I wanted.

Why pay retail for things you know your loved one with dementia are going to break (eventually-but not intentionally) when there is a low-cost alternative for those with a discerning eye.

Of course one would have to be very selective about the things they bought but I’ve gotta say, a lot of the second-hand stores have merchandise that’s in very good condition and some even have brand new items from stores that are over-stock that they sell at a greatly reduced price.

I suggest finding second-hand and thrift stores in/around or near upscale neighborhoods (their cast-offs are usually always of a higher quality than those of people on lower-income brackets).

For example, instead of paying $20 to $35 dollars for a new can opener I bought one (that had been “gently used”) for $6.00 (and it was a Hamilton Beach appliance) and it works great. I got the same bargains for the cookware, too. I paid $5 and $10 dollars for pans that would easily cost $50.00 or more at Macy’s.

The way I see it, Miss Cathy still deserves the best-I’m just giving her the best that someone else had purchased first.

So now she can break and burn with abandon (because we all know it’s just a matter of time before it happens again) and the can-opener’s days are numbered but I don’t have to worry about counting because I know where to get a quality back up cheap.

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.

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.

False Alarm

Posted in August by

I was walking with my friend William down Park Ave after we’d seen the Alexander McQueen exhibit at the Met earlier today. It was one of those rare, lovely, breezy summer days in New York where it’s a joy to be outside so we were taking advantage of being out in it. We were spontaneously on our way to Grand Central Station because William had never been to the Manhattan landmark before and I was excited to show it to him and show off what I knew about the bustling train station.

I’m in New York City for most of this week-some fun and some work; this was one of the “fun” days (or so it started, but I digress).

He turned to me and said,” How is Miss Cathy doing? Are you okay leaving her while you’re here in the city?”

“You know,” I said upon reflection as we dodged cabs and other pedestrians crossing Vanderbilt Place, “I do.” “I mean, I still worry but I make sure that she has everything that she needs before I leave for a trip, I make sure to go over with her where her emergency alarms and numbers are and I tell Tony to be on guard.”

I keep reminding myself that the doctor says it’s good for her to be on her own (especially now while she still can be) and I just try to let go of worrying about what might happen.

I told him about my increasing concerns over her cooking and forgetting how hot the burner is but I can’t get her to turn the flame to low, so, I have to let that go, too (and I’ve developed a taste for everything being “blackened”- I choose not to see it as burned, kinda like the glass being half full-with bits of char in it).

She had just called me to ask, “Did you just call me?” (I had not) which prompted William’s inquiry. She sounded good, full of her usual chatter about everything that she was doing. When she told me that she’d been downstairs to visit a neighbor in the building I thought to myself, “Good for her! I’m not gone 24 hours and she’s already done more socializing than she’s done in the past month-I should go away more often.”

I was pretty content to move on with my day.

After cocktails and an early supper at a trendy restaurant in the neighborhood known as Hell’s kitchen (I know-only in New York right) I was walking back to the apartment I was staying in and figured it was as good a time as any to check my voicemail.

I’d noticed a call earlier from an 800 number but thought nothing of it when I saw that it was from “Provo, Utah”. I don’t know anybody in Provo so imagine my surprise when I listened to the message that it was courtesy call from the alarm company telling me that the EMS had been dispatched because they couldn’t reach anyone at the apartment and for me to call another 800 with the pass code to find out any further information.

WHAT!? Huh? I had to stop on the street and listen to the message several times to try to remember the number to call and stop myself from going into full on panic mode. I never could get the number it right either because of adrenaline or street noise, which was frustrating. I didn’t have my messenger bag (read: “man purse”) with me (of all days) I didn’t have a pen and paper. I was near the apartment where I’m staying so I got inside as fast as the elevator would take me upstairs, trying to call Miss Cathy in the elevator (and there was no answer) so I rushed in to listen to the message (yet) again and call the number given to find out what was going on.

I gave the young man that answered the call all the relevant information as requested including the pass-code that mom made up (thank God I remembered it or they wouldn’t be able to give me any information). He put me on hold (just long enough to feel like forever and for my mind to start to come up with the most god awful scenarios). He came back on just before I had time to think up the worst and he said that the alarm had been set off three times. They were able to talk to mom and verify that two were false alarms but they didn’t reach her the third time so the police were dispatched “as is protocol”.

I listened then asked for more information but he said that that was all that he had, the only other thing he could tell me from the notes that he had on the computer screen in front of him was that my brother was called when they couldn’t reach me.

I listed to what little he had to say but I needed more. Part of me understood that he was doing his job and telling me all that he knew so it would be foolish to keep asking him questions that I knew he couldn’t answer but I couldn’t stop myself, it was like I had “questioning turrets”-I couldn’t shut up. I had to make myself stop asking him for answers (and lets face it-comfort and reassurance that everything was okay) and get off the phone with him and call my brother.

I called my brother’s cell phone and it went directly to voicemail, I called my sister in law and got the same thing, I called the apartment once more in hopes of reaching somebody and it rang until voicemail clicked in.

Now I was getting really worried but I was more pissed than panicked that no fucking body was on the other end of the line and I needed to know what was going on!

I thought to call our upstairs neighbor; Ron (one of Miss Cathy’s other “sons”) in the off chance that he heard something or hopefully knew something.

He picked up on the second ring (thank you Jesus) and he told me (quite calmly) that everything was okay; it as all a false alarm and that Miss Cathy was downstairs asleep.

“Asleep?! Asleep?!” What the ……I’m sitting here mentally multitasking how soon I can pack, if I need to pack, what time the next train to DC was/is and deciding just how much guilt I’d have time to heap upon myself on the train ride home and she’s asleep!

Of course I said none of this as I listened to Ron, he told me that there was a freak summer rain this afternoon that was very intense and the wind had knocked over several of the plants on the balcony. Miss Cathy was attempting to go out to make things right and forgot to turn off the alarm as she pushed the sliding glass doors open. Apparently the sound of the alarm got her rattled so she forgot the pass-code to reset the system and she really started to panic when the security company started talking to her through security system, which is a box on the wall in the kitchen.

She calmed down enough and was able to give them the information they needed to re-set the system but somehow she set off again, and again she was able to give them the info needed to re-set the system and call of the cavalry but what I don’t know yet (because she’s “asleep”and not answering the phone) is why she didn’t, couldn’t or was too flustered to do the same thing the third time she set the alarm off by mistake.

When they couldn’t reach her the third time they sent out the police who came to the apartment and used the pass-code on the lock-box on the front door to gain entry (which really freaked her out) and she couldn’t find her ID to prove that she was who she is (I had left her ID on the living room table for her but it’s my fault that I didn’t specifically hold it up for her to make sure that she knew it was there-I just left it where I “thought” she was sure to see it next to her daily pill box.

Fortunately, this is when Ron heard the ruckus and came down and vouched for her as the owner of the apartment. The police were still not convinced that she wasn’t being coerced into saying that everything was alright so they conducted a search of the entire apartment to make sure no one was in one of the back bedrooms attempting to do her harm.

Satisfied that it was all a mistake they left and the alarm was reset. Ron sat and talked to her for more than a half hour then left when she said that she was going to bed.

So, thanks to Ron I now know that she’s all right and I don’t have to “worry”, worry. I can only assume that the storm knocked out the cell towers where my brother lives so that’s why he can’t reach me (or not, but I’m not going to lose any sleep worrying about him tonight). I am going to give Miss Cathy what “for” for not picking up the phone.

I know her very well and I know that she sleeps with the phone next to her bed and she can pick it up and answer or ignore it-it’s her choice you know she’d be a “chatty-cathy” and pick up if it were one of her girlfriends calling with some gossip or one of the country relatives of unknown relation calling but just because the “alarm” is over for her-it’s “false” of her to think that she isn’t the only person impacted by the events of her day.

“Luu-cy, u got some ‘spaining to do”

Paper Chase Part l

Posted in July by

My brother and I have started the process of getting Miss Cathy’s “Estate” in order. We also want to sure that when the time comes she’s able to take full advantage of Medicaid for long-term care in a nursing home.

The process is daunting; hiring a lawyer (good luck setting all of this up on your own), researching what to ask, what to expect, and the paper work and forms, Oye Vey! Part of me is frustrated (and panic’d) that we’ve dragged our feet for so long and another part of me wants to cut the two of us some slack and remind myself that “things happen when they’re suppose to, and if we didn’t do it before it wasn’t meant to be so if we’re doing it now, it’s the right time”, so, there’s that constant push/pull of reprimand and encouragement going on in my head (it’s getting awful noisy in there).

The first step was a lot of research (mostly online) finding out what to expect and the steps to take. The more I read and the more I learned it seemed like pretty dangerous water to navigate alone so it became glaringly clear was that we’d need a lawyer. Given the legal world we swim in it’s best navigated by sharks (i.e. lawyers) anyway. Don’t get me wrong, I have the utmost respect for lawyers, I just hate that I feel powerless in that arena, like I’m always having to depend on a lawyer to translate and interpret my options, the law and then advocate for me. And the whole process and outcome never seem to be as clear-cut as on TV. The way the system works you’re as good as “dead man walking” if you enter into a courtroom to represent yourself. The “legal-eeze” in the documents alone is enough to make you feel like a damsel in distress so that one of the lawyers on the TV commercials (from the firm of “Rip-off, fly by night and takes all your money up front with no guarantees of getting you want you asked for) appears to be your knight in shining armour.

So, it was with that skepticism that I started my quest back in April. First, I contacted the local chapter of Alzheimers.org and they gave me a referral list of lawyers in the area that specialized in elder-care (a growing market of lawyers that work with families on estate planning, wills, Power of attorney, etc). They even have an organization called “The National Academy of Elder Law Attorneys” (website: http://www.naela.org) and can be researched state by state.

The list for my area wasn’t that long which surprised me given that we live just outside a major Metropolitan area (and judging from the assisted living, retirement communities and the huge amount of space given over to handicapped parking in the local shopping areas) I assumed it would be like shooting fish in a barrel to find a lawyer.

There may not have been a plethora of lawyers to choose from it was a start and in the end all I needed was just one good lawyer that we’d been comfortable working with.

I wrote down a short list of specific questions that I asked each lawyer during my initial phone call to save time and to help eliminate lawyers that I didn’t think would be a good fit for our situation. I didn’t want to waste my time or theirs so I made a point of being very specific and stressed what my ultimate goal was for my mother and asked them about there experience doing what I needed. These were my questions:

1) My goal is to help my mother qualify for long term care in a nursing home and have Medicaid pay for all of it-how do I achieve that and respect her wishes that her home not be used to pay for her care?
2) What is the Medicaid “look back“ that I’ve heard so much about and are there any ways around it?
3) Is her current will valid?
4) Does she need “estate planning” if she has little in the way of assets?
5) Do you charge for a consultation and if so/what?
6) What is your hourly rate?
7) Do you charge by the project or by the hour?
8 What has been your experience working with “elder care”?
9) How many estates have you set up?

If I was lucky enough to get the lawyer on the phone (and they were gracious enough) to indulge my questions I took notes so that I could compare and contrast later. Asking about the Medicaid “look back” was the most eye-opening question because the laws have changed recently and one lawyer cited old information and it made me realize that I shouldn’t assume that “any or all” lawyers I talked to had the most current information.

I left messages with secretaries for those not available and it took the better part of a week to talk to the seven lawyers on my list. After eliminating the lawyer with the outdated info (that was no-brainer) and the one who said that eldercare was really not the mainstay of his practice, I was left with five to choose from and they all said and offered pretty much the same thing (with a slight variation on their hourly rate which ranged from $275 to $400 an hour) except one.

Interestingly, only one lawyer, Cheryl Chapman Henderson asked me a question none of the others did. After my standard “Q and A” she asked me, “Do you know about the VA Pension Benefit?” and when I answered “no” she proceeded to tell how Miss Cathy might be able take advantage of this little known program offered to widows of a veterans who served during a time of war (any war). She had piqued my interest with that little factoid so that exchange put her on the top of my list-I liked that she brought something to the table that I would otherwise never have known about.

She also told me that they hosted a free estate-planning workshop at her firm so I signed up, thinking it would help me to gather some more information that would help me make a decision as to how to proceed.

Next week Paper Chase: Part ll

Romancing the stone (granite)

Posted in July by

Last Thursday was Miss Cathy’s quarterly visit to her primary care physician, Dr Granite; just a tune-up to kick the tires. As usual she’d been “mentioning” the appointment daily for the last week so when the day finally arrived she was all ready with her list of questions and sitting on the couch ready to go before I’d finished my first cup of coffee. She always gets a little “wound up” (anxious, hyper and nervous) whenever we go to see one of her doctors so I was having second thoughts about something I needed her to do.

My brother, Tony and I have met with a lawyer about setting up her estate and putting things in place so when the times comes and she needs to go to a nursing home that Medicaid will cover the entire cost. We’ve got a lot things going on and part of the process requires a form to filled out by her doctor. I knew I could ask the doctor about it but it might come off as predatory, like I was setting her up to rip her off (and I gotta say-it’s not like she’s Crystal Carrington and this is Dynasty or anything, but still…. ) so I thought it best if she asked for the form since he was her doctor and they have a good rapport.

The form that we need filled out is very subjective and completely voluntary so a lot of doctors don’t want to get involved, so it might require some finesse and tact to get it (and while Miss Cathy has still has many wonderful attributes “finesse” and “tact” are not two of them). But, it’s a pivotal part of what we’re trying to accomplish so it’s important. I took my time and patiently, in as simple a manner as possible told her that we still haven’t gotten anything finalized with the lawyer but it would be great to know if the doctor was even “willing” to help out. All that we needed from him right now was to know that we could count on him at some point in the future.

I stressed that all I needed was for her to ask Dr Granite was for his help at some point in the future with a form that would state her condition and that her son (me) is her primary caretaker-sounds easy enough but the simplest things can be complicated in her present condition. I took great pains to be as specific as possible and prep her on exactly what to ask. To be fair, I was springing all of this on her just an hour before the appointment but I thought better last minute than days earlier when she might forget or get confused.

As expected, she had a ton of questions, and they just kept coming-from the obvious to the inane, I felt like I was being ravaged by a swarm of bees. Patiently (without scratching myself) I tried my best to answer all of them knowing that the more she asked and the more she knew, the more likely it was that she’d get confused. But, all I could do was hope for the best and remember what I’d learned in AA, “take the action and let go of the result”.

As I stood getting ready to leave she looked up at me from the sofa, looking like a little girl lost and said, “I don’t know why but I’m nervous all of sudden.”

I suddenly wondered if I’d put too much pressure on her by asking her to talk to the doctor, or if she felt nervous that she’s say too much or get it wrong. I told her that she didn’t have to worry about talking to the doctor about the form, she could just stick to her list of questions and I would take care of it if that made her feel more comfortable. I started for the door but couldn’t shake the vulnerable look on her face from my mind so I went back to her, gave her a hug and said that I hoped that would help ease her nerves. She smiled back at me and then we were off.

We waited for the doctor in the tiny exam room after the nurse went over Miss Cathy’s vital signs. Dr Granite came in soon after and they fell into their years old pattern of small talk; catching up on each other’s lives with a few laughs and jokes before settling into the business at hand.

When the doctor asked her if she had any questions she made a big production of bringing her crinkled piece of notebook paper out of her handbag and all kibitzing aside she became very business-like and serious as she went down her list asking about her arthritis, the nausea she had a few weeks ago and a “popping’ she felt in her knee. Satisfied with the answers (and most of all his reassurance that everything was fine) I could see her fidgeting a little, winding herself up for the “big” question.

After “hemming” and “haw-ing” a little she said, “Doctor, I want to ask you one more thing..” She started to stammer about “putting her affairs in order” and “a piece of paper the lawyer says she needs” and “wanting her children to be able to do as she instructed” (jeez, it was painful to listen to her but I let her finish because I was the one that asked her to speak to the doctor. And, as wrong as she got it and as exasperated as I was, I couldn’t help but be proud of her for trying).

I could see the doctor trying his best to understand her, his eyes trying to follow her train of thought, like watching a drunk trying to walk a straight line during a sobriety test and all you saw was them weave from point A to point B, still you hoped they’d get to the end somehow. He listened (patient man that he is) and then, seeing an opportunity when she paused (just for a second) he jumped in to venture a guess and said, “You’re talking about a form that states your wishes?” and she said, “Yes, that’s it!”

“You’re talking about a ‘living will”.(No, actually that’s not what she was talking about)

They smiled at each other, very satisfied with themselves that they’d figured out the riddle. He assured her that she didn’t need him to fill out that “form” and any lawyer could supply that document for her. She seemed a little confused but determined because knew she hadn’t succeeded in getting what I’d asked so she tried again to ask for his help but this time I jumped in before she lost him completely (and I had to listen to her struggle to get it right).

I told Dr Granite that we already had an Advanced Medical Directive in place and that’s not what we needed. I said that we (she) were working with a lawyer and putting together her Personal Care Plan and we might need his help filling out a form so that she can get a “Child caregiver exception” to help expedite the rules that Medicaid have set up to be accepted for long term care. He took a moment to digest the information then said, “sure, just bring me the form and I’d be happy to help.”

There was sign on the wall of his office (one that I’d never noticed before) that Miss Cathy had seen when we first walked in that stated that forms and other documents were to be filled out at the doctors discretion and will be billed separately from the patient’s insurance. I told her not to mention the sign but of course she did, she couldn’t help herself.

He shrugged and seemed to dismiss it saying that it’d been there for years (so I took this as a “sign” not to worry about it). Not satisfied (after the doctor had just agreed to help us and had all but told us to not worry about the sign) Miss Cathy just would stop talking about the sign and let the subject drop. Once again, as soon as I found an opening to cut her off (not in a mean or rude way-I just waited for her to take a breath, regardless of whether she had finished her thought or ended her sentence) I reminded her that it was the doctors’ office, hence his rules and to let him finish talking. She acquiesced and he continued, he told us that lately a lot of his patients had been turned down for long term care for one reason or another and that concerned him, but not to worry, he was willing to help in any way that he could.

Miss Cathy thanked him and before she got up go to another room to have some blood drawn as she has had done hundreds of times before she said, “I don’t know why but I’m nervous all of sudden.” And like Blanche Dubois in “A Streetcar named Desire” she innocently took the doctors hand as helped her up out of her seat to prepare for the short walk down a familiar hall.