Tag Archives: Diary

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.

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 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.

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

Shake and deflate

Posted in July by

Thursdays seem to be “doctor day” lately, last week we were at the family doctor for a check up and last Thursday, I was waiting with Miss Cathy to see another doctor-only this time it was in an emergency room.

Let me back up a moment and tell you how we got there. Tony called me on Wednesday to tell me that Nile, my niece was in the hospital with a collapsed lung. It was just one of those rare, freaky things that “just happen sometimes” and unfortunately it happened to her. Thank God she was at home taking summer classes and not back at school alone when it happened. I was in shock listening to him tell me about tubes, fluids, punctures, thoracic this ‘n that, trying to make sense of it all. The only thing I could focus on was that he said she was out of danger.

We did the dance of “You don’t have to come, it’s too far” and “Of course I want to be there” two-step that loved ones do with each other when one feels they’ve imposed enough with the news let alone adding to the burden by expecting the other to drop whatever they’re doing to be there and the recipient of the news feels impotent to help but wants to take some kind of action to show they care, even though they know they can’t affect any real change in the situation-so, showing up is usually as good as it gets. The only thing holding me back from leaving right then was the question of what (if anything) to tell Miss Cathy. I told Tony I was going to leave it was up to him and that he should take some time to decide if he wanted to tell her; running the risk of getting her upset by telling her or running the risk of getting her upset later on after the fact-it was pretty much a lose, lose situation.

He decided to call and tell her.

I was in the kitchen making myself some lunch after running errands all morning and taking a yoga class when she came into the kitchen in her nightgown to talk about the news. Her timing couldn’t have been worse because I was already running on fumes so I just couldn’t handle listening to her (not that she didn’t have every right to be upset). I just needed a moment to sit down and digest some food and the news about Nile before I could be any use to her. I felt as if I was being cold or that I was putting her off but I’m learning to take care of myself first (so that I can best be there for her later). It’s kind of like when you’re on an airplane and they instruct you (in case of emergency) to put your oxygen mask on first and then the child’s because you’re no good to them if you’re deprived of air-well, I felt like I needed to put my mask on first.

I could see some disappointment on her face as I told her that I needed just a little time to sit down and eat, then I would come and talk to her about Nile. She acquiesced and went back to her room. Through my open door I could hear her making calls, reaching out to share her pain but no one seemed to be there when she called.

Tony called back to tell me that she seemed to take the news okay and that she didn’t give him any indication to him that she wanted to come to the hospital so I took that as a sign that she might not want to go anywhere. I looked in on her a few times while I was supposedly “taking care of me first” but I couldn’t help it, I just wanted to make sure she was okay. What I saw was that she was restless and she just couldn’t sit still; first she was on the phone (in her nightgown), then when I looked in on her again she was fully clothed, with lipstick and her hat on sitting on the edge of her bed ready to go somewhere, so I asked, ”What’s going on?”

She didn’t answer, she just looked at me. A few minutes later, realizing I wasn’t going to be able to “put my mask on first” I went back into her room but she wasn’t there. I found her sitting on the sofa in the living room (back in her nightgown) looking sad and lost, her hands shaking just a little. Knowing that she’s a very nervous person and upsets easily (even before her diagnosis) I wasn’t surprised but I checked to make sure that she was “just upset” over her granddaughter and not about to have a seizure or a repeat of her disorientation and near collapse of a few weeks ago. I brought in the bowl of soup and toast on a tray that she’d left in the kitchen and sat with her to make sure she didn’t spill anything on herself while she ate, raising the spoon to her mouth with a trembling hand.

After she finished eating I suggested that she lie back down so we walked back into her room and we talked about Nile when she was comfortably under the covers. At the end of our talk she asked, “When do you think we can go to the hospital?” I told her we could go right then, but it would have to be in the next fifteen minutes to beat the impending rush hour traffic on the Beltway. Knowing that she couldn’t get packed and ready in that time frame she agreed that we wait until rush hour was over before making the drive to the Virginia hospital across the Woodrow Wilson Bridge on interstate 95, which is notorious for accidents, delays, construction and traffic congestion (and that’s on a good day). I told her that we should take advantage of the wait by napping because it was probably going to be a long night, so she and I both lay down but neither of us got much of a rest.

Even though she didn’t sleep and was “up” she was very slow getting out of bed. Bt the time she was packed and ready to go it was 8:00pm. As luck would have it, traffic had died down so we were at Mary Washington Hospital in a little over an hour hugging Nile and Tony, Suemi and Zachary, Nile’s brother. They had all been at the hospital since early morning and I could see the concern on their faces, all except Nile, she looked great-considering (and I’m sure the Percoset drip didn’t hurt). With Miss Cathy and me there out little family was complete, Nile being the last addition to the family nineteen years ago. She was remarkably composed and alert, not at all what I expected from someone with a tube sticking out of their side and only one functioning lung. She was sitting up in bed chatting with us, seemingly more concerned for everybody else than herself.

Miss Cathy sat in the chair by the bed holding Nile’s hand as Tony filled us in on her condition, saying that it was still a matter of “wait and see” whether or not surgery was going to be necessary. It was after nine when we got there and we stayed for a few hours, Mary Washington being one of a few hospitals I’d ever been in that had such a liberal policy for visiting patients. But, it was getting late so we ended our visit and drove to Tony’s house, everyone exhausted from the day and anxious to get a little sleep before being back at the hospital in the morning.

By eight am Suemi, Miss Cathy and I were in the kitchen having breakfast; Zachary had to go to work and Tony had decided to take another day off from his job and was already at the hospital. I was sitting in the family room that opened onto the kitchen, Suemi was at the kitchen counter preparing snacks for everyone and Miss Cathy was at the kitchen table with her back to me, talking to her daughter in law. Knowing that she could sit there and talk forever I suggested that she might want to think about getting ready since it would take her awhile and I knew she was anxious to see her granddaughter.

She said, “I think I’ll just sit here and relax for a little while” which I thought was an odd response since all she’d been talking about was getting to the hospital but I shrugged, and decided to fire up my laptop to distract me from overhearing the conversation between the women that I’ve heard many time before. A few moments later I caught something out of the corner of my eye and it was Miss Cathy’s hands that were shaking. I got up to go to her just as the shaking started to take over her body, Suemi saw this happening at the same time and reached her first, cradling mom’s head against her side talking to her soothingly as the shaking became uncontrollably.

No sooner had I reached the sink to get her a glass of water when her eyes started to roll back in her head and she vomited the oatmeal she’d had for breakfast. Suemi said, “Call 911” and I fumbled with their landline, surprised by how quickly the situation had gone from familiar to chaotic, panicking a little myself, before calling the paramedics on my iPhone and regaining my footing. Suemi was brilliant, she was in control and calm and I followed her lead, grateful for once, not be alone to cope with the situation. By the time I’d given the 911 dispatcher the address and told her the situation Miss Cathy had stopped shaking and I could see that she had “come back to herself” (her eyes were newly focused and she was coherent). She seemed out of any immediate danger and said that she didn’t want to go to the hospital but she still wanted the EMS to come. She was understandable upset and started to cry a little, Suemi by her side to comfort her. I knew she was out of danger when she started barking orders that Duke, the dog needed to be put away before the emergency service workers arrived- even with vomit on her nightgown she was still trying to be in control.

We’d cleaned her up as best we could and she was trying to change out of her nightgown into a pair of pants by the time the paramedics arrived (which was under ten minutes). Two paramedics worked on her while a third asked her questions to ascertain her condition and to determine how alert she was. I jumped in when necessary (to correct some misinformation she had given) and I took a mental note that I should always carry my “Mom” notebook (which has all her medical history, prescriptions and all relevant information in it) with me at all times so that I’m better prepared in a situation like this.

When the medic asked her if she wanted to go to the hospital she said “yes” and burst into tears. I went to her this time (Suemi was out in the garage with the dog) and held her close as she sat in the chair crying, saying that she was afraid and embarrassed, her ego de-flated. I told her that I was there, that Suemi was there and nothing was going to harm her. I told her that all the people in the room were there to help her. By this time another team had arrived from an ambulance service and they put her on a gurney and drove her to the local hospital emergency room. I grabbed as much of her stuff as I could and followed in my car, Suemi waving from the open garage door saying she’d be there soon.

We stayed in room 10 of the emergency room for about four hours while they took an EKG and chest x-ray. She’d calmed down considerably and slowly became her usual “Chatty Cathy” self with the nurses. The doctor examined her early on and came back a few hours later with the test results, which confirmed that her episode was anxiety related. Her blood sugar and pressure were understandably elevated so they wanted her to stay for awhile and relax until her levels could stabilize then I could take her home. This would be the third time she was in the emergency room due to a nervous response to a situation; it was obvious that she couldn’t handle stress anymore.

Once we were home I got her comfortably into bed where she napped for the rest of the day. I’d already talked to Suemi in the emergency room about what we needed to do moving forward and later I called Tony at the hospital where he was still waiting to hear from the doctor about Nile’s condition to tell him that Miss Cathy was okay. We all agreed that what happened to mom confirmed what we’d suspected all along. We decided that it was best that we no longer tell her anything that could upset her. She just can’t handle bad news or stressful situations anymore; it’s not good for her health.

While she was resting I washed her soiled clothes, refilled her meds and got back to some our day-to-day routine. Then I lay down for a nap myself and slept like a dead man for four hours, waking up at 7 pm to check in on Miss Cathy and she was sitting up in bed watching television.

Post script: On Saturday afternoon Nile was released from the hospital after her lung had “re-flated” without the need for surgery. Her prognosis is good and she should be able to return to her hectic, active lifestyle as a co-ed in a few weeks, but since this happened to she has a recurrence rate of 30% in her lifetime.

As for Miss Cathy, she woke up on Friday feeling like her old self, “pumped up” as good as new. Her cousin, Mary came to the apartment with her daughter Juanita for a visit and that lifted her spirits but nothing made her happier than finding out on Saturday that Nile was home. I could hear her on the phone talking to Tony offering to come over to “take care” of Nile while she was convalescing-completely oblivious that “she’s” the one in need of care.

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.

Reaching out

Posted in June by

I was talking to my good friend Stefano the other day, telling him that I’d been reaching out to people on Facebook more and that I had “friend-ed” someone I knew through him. He told me that he had just told this same friend about my blog because his friend was going through a similar situation with his mother and suggested that we talk to one another.

I had no idea of his situation when I “friend-ed” him, only remembering that he’s an interesting person that I met in New York but was living in Europe that I hadn’t been in touch with for awhile. Well, I don’t believe in coincidences and wasn’t surprised when Lester, the friend and I were on the phone soon after talking about Alzheimer’s.

He told me that a little over a week ago he had flown to New York to visit his mom in Queens after being in Los Angeles for work. He said that he was surprised by how different his mom was, that he knew something was wrong with her and that something had to be done immediately to get her help. I listened to his story, verbally nodding in agreement and acknowledgement that I knew exactly what he was talking about as he related stories of her erratic behavior.

His situation is different from mine (of course, no two experiences with dementia are exactly alike). For one his father is still alive, but elderly himself so isn’t able to cope (mine is dead) and Lester’s brother lives on the West coast (and mine is only an hour away in Virginia) so he’s more or less doing all of this by himself but the end result is the same-he’s the adult child of a parent that now needs his help to guide her through the end of life as she guided him at the beginning.

I listened as he told about her conspiracy theories, paranoia, forgetfulness, confusion and his very real fear that she was going to get in a car accident because she was still driving herself to school where she still teaches. He said that she was very clever about how she covered up her shortcomings and had developed shrewd methods to compensate for her mental deterioration.

I could hear in his voice how tired and sad he was and there was a moment as we talked when I could hear the realization hit that his mother as he knew her may be gone forever.
I told him to think of her in a different light, to (take some time and) mourn the loss of the mother he knew but to remembered to hold onto the love (which is still there and always will be) and to focus on developing a new relationship and new bonds with her, as she will be ever changing because of the disease.

From all that he told me and all that he’d learned (and learned to do) in just a week’s time I told him that he’d done a remarkable job considering. I shared bits of my experience where it made sense but tried to be sensitive and remind myself that this wasn’t about me and my experience-this was about listening and hopefully helping someone who was just joining the “brotherhood”.

As we talked I made a few suggestions; I learned in AA years ago never to “tell” someone what to do, the normal reaction from most adults (and kids, too) is to put up a wall and become defensive when being “told” what to do so whatever you’re saying never gets a chance to be absorbed, processed or possibly acted upon.

So I “suggested” that he not argue with his mom and that right now “being 100% honest with her” (which was the basis of the relationship that he had with her before all this happened) wasn’t as important as getting her to the lab for an MRI and an appointment with a neurologist for a complete evaluation to determine what her condition is and at what stage. I told him that I’m very much of the “ends justifies the means” school and to lie to her if he had to achieve his goal which is to help her.

I told him about Alzheimers.org (an organization he said he didn’t know existed) and how helpful they’d been for me with everything from resources to support groups. I told him about the legal ramifications of what he was about to undertake and what he might need; power of attorney, medical directives, estate planning, etc as well as thinking about long term care facilities and how to plan for that. I could imagine that his head was about to explode form so much information coming at him all at once. He said that it was more than he had anticipated but that he was grateful.

The best piece of advice I gave him was one that was given to me early on by several people-that as a “caregiver” to make sure that he takes to take care of himself.

I didn’t really know what that meant in the beginning, so focused was I on my mom and her welfare that I wasn’t really doing the best job of taking care of myself, so I don’t think I was best prepared for the “marathon” that this process of care is instead of the ‘sprint” that I was my initial approach.

Truth be told, l think that I’m “just’ beginning to take care of myself (a year into this process) which definitely impacts how I can care for my mom. But, it takes what it takes and as Maya Angelou says, “When you know better, you do better”.

I told Lester that he wasn’t alone and that he could add me to list of people to call for support or if he ever just wanted to vent and have someone to listen (and not give advice, judgment or an opinion) I was here for him.

I got off the phone realizing that in talking to someone who was new to all this that I knew more than I thought I did. I was sorry for his situation but happy (for lack of a better word) that I could reach out and give what so many have given to me by way of support, empathy and information.