Monday, May 30, 2011

Good night moon (Good morning Miss Cathy)

I was in my room writing when I heard Miss Cathy moving around in her room and then I heard the sounds of her shower coming on. I looked at the clock and thought it was odd but went on about my business for a while longer. I got up from my desk to go get something to drink and as I passed by her doorway I could see her making up her bed.

“Good morning!” she said full of her usual morning cheer.

”Good evening”, I corrected her thinking she was making a joke. I started to continue on down the hall until I heard her say, “what?” “What time is it?”

“It’s 8 o’clock”, I answered. “ 8 o’clock in the morning right?” she asked looking puzzled.

“No, it’s 8 o’clock at night.” I said chuckling.

“Well, damn Sam, I thought it was time to get up, Oh well” “It’s Sunday-right?”

“No, it’s still Saturday, you’ve been asleep for about five hours, you took a nap.”

“Oh, okay, well, I woke up and I thought it was getting light outside so I just got up and took a shower thinking it was morning.” “ I guess I really f*cked up, didn’t I?”

We both laughed and I said that it was an easy mistake to make. Since it twilight it could have appeared to somebody just waking up that the sun was coming “up” instead of going “down”.

I really didn’t know she’d been in that deep of a sleep (or that she’d slept so long). I had been walking past her room for hours making all sorts of noise so she must have been out like a light (how she got so tired from a day of eating breakfast and lunch and watching TV in the living room is the real mystery to me-but I digress).

For someone who is constantly saying, “I rarely take naps in the afternoon” –guess where you can find Miss Cathy most days by 2 pm-in bed taking a nap. Hey, whatever makes her happy and she does seem happy, so, I say, “nap away”.

And contrary to what she also says about having a problem sleeping during the day (or at night after a hard day napping) she doesn’t ever seem to have any trouble “going under”.

I’m just happy I don’t have to read, “Good night moon”.

Monday, May 23, 2011

Dr NO (show)

I’m usually loath to speak ill of doctors or Miss Cathy (lately) but recently the two-separately and together have made for a prescription too toxic not to tell.

I’ve gone on and on about Miss Cathy’s visit to the neurologist where (in her mind) he set her free, like Lincoln with the slaves. No, this isn’t about “that” but it did (start) during that infamous visit.

One of the things she had scribbled down on her neatly folded piece paper of “things she wanted to discuss” with the doctor was having help getting her Aricept through mail order. She said that Blue Cross/Blue Shield had quoted her a price of $30.00 for a 90-day supply in lieu of the $86.00 she just started paying (for the same quantity) of the generic because until recently Aricept was not available in a cheaper generic form because of it’s exclusivity on the marketplace (making it was more than $280.00 for a 90 day supply).

Ah yes, the real “pill” here is the Pharmaceutical companies in my book. HIV/Aids and the elderly are there cash cows these days. I have friends with HIV /Aids and their medications can start at $6,000.00 a year (even if one has insurance) and most people have to take more than one pill so you can imagine the astronomical yearly costs!

The same is true with the elderly, patients with Alzheimer’s or Parkinson’s can spend hundreds of dollars a years for their degenerative disease medications alone, not to mention the other medications that accompany old age; high blood pressure, diabetes, high cholesterol, insomnia, depression…..the list goes on.

Anyway, her neurologist happily agreed to "take care” of changing the prescription to come through the cheaper mail order form-that was on March 27th. By early April she hadn’t received anything through the mail so I started calling the doctor’s office to see what was going on. I was told it would be “taken care of” (and at that time I had no reason to doubt the veracity of that statement) so we waited patiently.

We waited and waited until her daily supply of Donepezil HCL (generic Aricept) was dangerously low so I called the office (again) to check on the status of the medication and I also asked to be given some samples of Aricept to “tide” Miss Cathy over until the meds arrived in the mail.

Later that day while I was at the office picking up the samples the doctor was “in” so I got a chance to talk to him and remind him of how long this has been going on. I made a point of telling him that the delay was making Miss Cathy very agitated (and he’s the one who said that wasn’t good for her).

He listened patiently and told me that he would take care of “mom” (which I guess may be a custom from his country as a way of addressing the elderly or it’s just a “catch all” way of talking to and about elderly black ladies who’s names he can’t be bothered to remember). I didn’t like his dismissive approach-I didn’t see him write anything down or ask me for any pertinent information but, I left with a fist full of samples and his assurance not to worry.

Which I didn’t, I didn’t worry a week later when I’d check the mail and “no pills”, or the week after that. I didn’t worry-I got pissed off, I was pissed off that I had to start calling his office “again”. On May 13th I called to see what the hold up was and left message after message with Lydia, the receptionist (and gatekeeper) who said she would ask the doctor what was going on and call me back-she never did.

So, I called “her back” on the May 17th and was told that the doctor “phoned in” the prescription to CVS Pharmacy on April 15th and it’s been sitting there waiting for me to pick it up. I told her that was not what the doctor had agreed to do and that I wanted to speak to him, she said, “he’s busy now with patients and will have to call you back when he has some time.”

Again, I left a message for him to call me back that day-he never did.

A couple days later after I got home from a cater/waiter job I did see two missed calls from the doctor’s office so I called the next day. Lydia proudly and accusingly told me that, “the doctor tried to call you” to which I replied, "Yes, I see that, but when he called “I” wasn’t available, he’s not the only one who’s busy.”

I asked Lydia to call CVS to verify that a prescription exists for Miss Cathy because I told her that I never got a call to pick up the meds (which is there standard method of operation). “Why do I have to do that? I’m not going to do that”, she said.

“Well”, I said as calmly as I could, “because it’s your job, and not mine, and quite frankly I have spent more than enough time with you on the telephone trying to get what my mother should have had months ago.” (What I wanted to say was “B*tch, I’m not here to do your job!”).

She put me on hold, after a moment I was talking to Danielle (not the doctor) another receptionist. At least Danielle was co-operative (even if she did talk to me like I was a mental patient-apparently “Danielle” must be the re-enforcements they bring in when Lydia’s had enough)-whatever!

At least Danielle called CVS then me to say that the prescription was $86.00 for the generic and it was not at our local pharmacy but at a CVS that was 10 miles away which was probably the reason I was never called but who knows).

I asked her to have the prescription moved to our local pharmacy and left another message for the doctor to call me. So, almost two months after the initial request to have the medication sent through mail order, it hadn’t happened and I had no explanation from the doctor as to why.

I picked up the meds from CVS and explained all of this to Miss Cathy a few days ago. At first she was a little aggravated (a lot actually) so we talked about it and we agreed that the doctor had messed up and never did what she asked. She even offered to call Blue Cross/Blue Shield again to verify that the medication is available through mail order (and I thought this was a great idea, she was more than capable of handling this matter and it would give her a “project” to do).

I know that I should have been the one to follow up with the insurance company and doctor (after all, that is what I’m here for) but frankly I was burned out and couldn’t handle another conversation about Aricept-generic, mail order, or pharmacy pick up. Later that night Miss Cathy and I talked about it again (by this time she was pretty worked up about the confusion and the cost).

I couldn’t blame her really, but I didn’t want her to be as upset as she was about the situation (especially at bedtime) so my focus was to calm her down (which then gets me worked up). I told her it was okay to be upset and to wait until the morning when she could make phone calls, that way she could channel her energy where it would some good.

By the time I “put her down” she’d calmed her down enough for sleep. The next morning she called me in to talk and I thought she was going to tell me her paln of ‘action” ask me for the doctor’s phone number again so she could call his office (the night before she said she wanted to call to give them “a piece of her mind”) instead she told me that she’d been thinking and although she appreciated all that I’d done for her she’d come to the conclusion that the doctor did “what she asked him to do” and she would wait until her current supply of Donepezil HCL was gone to call the insurance company herself to get the meds through mail order-“WTF”!

I started to say that the doctor didn’t do what she asked him to do as evidenced by the fact that she didn’t have the $30.00-90 day supply but the $86.00 bottle of generic pills that she already had in place “before” she ever talked to the doctor.

I almost said that but I didn’t, what I did say was, “I just can’t talk about this anymore, if you’re happy with the way things turned out then that’s all that matters to me.”

The doctor is still a “no-show” by phone but at this point it doesn’t matter, Miss Cathy “seems” to be at peace and I just have to make my “peace” with the fact that I’ll never get back all that time that I spent on the telephone.

Monday, May 16, 2011

He said, she (thought) she said

I came home late the other night from one of my cater/water gigs and sure enough Miss Cathy was awake and ready to share whatever “goodies’ I brought home to eat. I was so busy working that by the time I got to the kitchen the only things left were “greens” (a mix of kale and turnip greens) and Mac and cheese (all that was missing was the fried chicken to round out a good southern meal).

While I warmed up the food Miss Cathy was all excited to tell me that my ex, Chad had called to talk to her. Before she got into what they talked about she made a big deal of telling me that she was “half asleep” when he called so she didn’t recognize his voice right away but soon they were talking up a storm. Between mouthfuls of food she proceeded to tell me everything that was going on in his world (all of which I already knew) but it was great to see her so happy so I just let her talk (for a little while at least). She was obviously touched by his thinking of her and that meant a lot to me, too.

The next night Chad and I talked, catching up on our weeks’. Towards the end of our conversation he asked me if Miss Cathy told me that he had called. I told him that she had, prattling on and on and that she was so excited he’d thought to call to talk to her. He listened, then asked, “was that all she said?” and with some hesitation in his voice he said, “I have to tell you something that I think you should know.” He told me that at one point during the conversation that mom was at a loss for what she was trying to say and that the pause became long and bordered on uncomfortable.

He said that it was as if while searching for the right word she got lost in thought and confused about not only the word that she couldn’t remember but the topic as well. Chad said that he didn’t know quite how to handle it so he tried prompting her with a variety words thinking it would help “jog” her memory but then he was worried that “all the words he was throwing out at her” might be further confusing her.

What bothered him the most (I think) was when she finally “found” the word she was looking for it was “car-pooling” which had nothing to do with the subject they were talking about but Chad played along as if that was the topic at hand.

He said that he mentioned it because he wasn’t sure Miss Cathy would. I told him that she hadn’t mentioned that part of the conversation and that I understood all too well what he had experienced and I was grateful he told me about it. Thankfully it’s only one a few signs she displays that there’s anything wrong with her. He did the right thing by trying to help her remember what she was trying to say and that there is no “right way” to be in those moments.

It wasn’t until the next day when she brought up the conversation again, that it “clicked”. She said,” I don’t know what he must think of me, he must have thought I was drunk or something because I was “half asleep” when he called.” “I was laying there and I just couldn’t get myself together.”

That’s when it dawned on me that she had known something was “amiss” during their conversation and she was genuinely concerned with what had happened and how she came across to Chad. It also sounded to me like she was “covering her ass” with a convenient excuse (which to be fair) “half asleep” might possibly account for her not recognizing his voice at the beginning of the conversation but not the uncomfortable pause and use of a word that had nothing to do with the topic which was deep into the conversation.

I find it interesting that she knew that it happened and chose to find a way to blame her confusion on “sleep”, instead of attributing it to her condition but I’m used to that by now. Whenever anything occurs it’s never her fault or a result of her dementia, there’s always another explanation or place for blame. She may not remember what she said but she knows how to cover things up-or so she thinks.

Monday, May 9, 2011

Blame it on the a, aa, akk, uh alkaline

I finished my first week working as a cater/waiter last Thursday, which was good because I couldn’t have worked one day longer. If I thought it was hard to run a 10k (back in the old days, after a night of serious disco dancing and drinking) well, standing around holding trays full of drinks and being “in service” makes that seem like a cakewalk.

The job is not without it’s perks; I’m getting out of the house, (re) learning my way around Washington DC, I’m getting a behind the scenes look at what it takes to put on events (intimate and extravagant) and there’s the scrumptious food, floral arrangements and gift bags that we’re allowed to take home (depending on the event and the captain you’re working for).

I did meet an interesting woman at one of the jobs sites. Her name is Lois and we met after “service” as we were all taking a well-deserved break and making our dinner from the leftovers. Like I said already, I have not been working long but what I have noticed it that there is “a lot” of food left over after these events, sometimes even after the staff has eaten, there is a lot that is thrown out-the abundance and the waste is amazing. Anyway, I was loading my fourth cupcake into a take out container when I heard, “Somebody sure has a sweet tooth.”

Embarrassed, thinking that it was a captain (the person that is in charge of all of the cater/waiters) I turned to see Lois, who was in charge of the pantry. She’s not my boss but an important person in the “food” chain. There is a hierarchy to this industry that I’m still figuring out but one thing I know already is that it’s best to know your place in the queue and who can help whom.

So, I said (quite honestly) “No, it’s not for me, I like to take my dinner home and share it with my mom -she’s the one with the sweet tooth.”

I’ve only been a week but Miss Cathy and I already have a little routine established, she kinda stays up waiting for me after my shift (or her eyes pop open the minute she hears my key in the door and is calling out “Heyyy”) and I share whatever food I manage to bring home and stories of how I’m trying to do a job that I have very little experience at (remember I “padded” my resume to get the job saying that I had cater/waiter experience back in New York when in actuality I went on a few jobs when friends in the industry needed an extra hand. I so impressed my new boss that he thinks I’m a seasoned cater/waiter and is ready to put me in charge of people when in fact I’m just impersonating a cater/waiter and learning on the job as I mimic others but I’m determined to become who he think I already am).

Anyway, back to the “cupcakes”….we sat down to take our break before “tearing” down the event, she with her dinner and me with my take out container full of goodies from the dinner I just served to a baker’s dozen of the “Masters’ of the Universe” at the Capital One Corp offices. We started to talk and I told her that Miss Cathy has Alzheimer’s and to my surprise she said that her dad does too (although why I’m surprised “should” be the surprise since the alz.org stats say that someone is diagnosed with Alzheimer’s every 69 seconds).

I was shaken out of my “thought bubble” when Lois asked,” Does she drink soft drinks?” and proceeded to tell me that her father (and her whole family) only drink “AlkinWater” and that they never ingest sodas. She’s a firm believer that the chemicals in soda pop cause/exacerbate or contribute to Alzheimer’s; she then told me that I should google Alkaline and its effects on the brain.

I didn’t think that working a catering job would be the place where I’d find information about Alz but “hey” you drink where you find the water so I started taking “sips”. In the short time we sat together she went into great depth about Alkaline, which medications to avoid (I gathered she’s not big on western medicine) and a host of other topics. We had to get back to work but we exchanged phone numbers and Lois said she’d email some more info to me.

I started doing some research on my own and came across some interesting information, Not sure what I think about the whole holistic eating and living approach but it is food for thought.

Tuesday, May 3, 2011

Spring in her step

“I’m going out for a walk”, Miss Cathy announced one day last week, and with that she put on one of her summer hats (it was going to be 86 degrees that day here in Greenbelt) and she was off to the Rec-center where they have a treadmill she could walk on.

“I’ll take the trash out, too” she said as if it were an everyday occurrence and not the second time I’ve seen her do either since I’ve been living here.

“Good for you!” I thought.

Speaking of trash-the other day I had set the trash by the front door (as is my habit, in anticipation of taking it out later) when Miss Cathy volunteered for the job (another first). I said, “No, don’t worry about it, I’ve got to run some errands so I’ll take it out.”

And she said, “That’s alright, l take it out because I see it as a form of exercise.”

Well, color me surprised!

I know it sounds like a little thing but I was proud of her for insisting on the chore. And to think I had been lulled into a state of doing most things so that I didn’t expect her to ever offer to do a chore. To be fair, she takes care of herself very well and she does clean up around the house; vacuuming and dusting.

But it’s more than the chore itself-it’s the fact that she’s really starting to be more independent and out-going.

To me, its just more evidence that the two weeks she spent alone has given her a new attitude and some new life. She’s participating instead of sitting and waiting……for what? To deteriorate? The end? I don’t know, but that seems to be all in the past for now.

I started my new part-time job as a cater/waiter yesterday and Miss Cathy was tickled pink when I told her about the job. Interestingly, she was never quite this enthusiastic about things that went on with my art career-not that she wasn’t proud, I think that this is a “job” that she can relate to better. “Great!” she exclaimed, “at least this will be an opportunity for you to get out of the that “sweatbox” of a room of yours.”

I had to laugh; cause lord knows she was telling the truth! And with that I was off, to become one of the nameless, faceless servers at some swanky affair in DC. This will be interesting-I’m going from attending affairs like this to working at them.

Since Miss Cathy is in such a great place right now I feel comfortable leaving her for long periods of time, she’s got her medical alert necklace and a new attitude so what more assurance do I need!

Monday, April 11, 2011

Wiz-zed

I’m in Kansas City now and won’t be back in Greenbelt till the 21st. Without balloons or fanfare I gave Miss Cathy a hug and a kiss and took the train to New York last Thursday to hang out with Chad in the Emerald City and now we’re in the land of Oz.

I feel like I’ve escaped from the Wicked witch’s tower but that would infer that Miss Cathy is Glinda’s evil sister from the East. By the look on her face (utter joy) when I was standing at the door to leave I could see that she was a fellow escapee, too. She was looking forward to getting rid of my ass and as much (or more) as I was looking forward to leaving. How can you blame her really, I mean, the poor woman hasn’t been alone in over a year.

So, I guess that would make Alzheimer’s the Wicked witch that’s swooped down and turned our little world to black and white from color; dementia the evil tower, her paranoia and anger issues would be the flying monkeys (which scared the be-Jesus out of me when I was kid by the way) and lately her behavior threaten to send me under the bed once more.

If it’s true what Mr. Baum says that I’ve been home all along then why is that when I click my heels nothing happens? I’ve lived in the Emerald City (New York), the land of Oz (Kansas City) and even over the rainbow (on the left bank in Paris) so why oh why do I keep waking up in Greenbelt? Since becoming suburbanized I’ve traded in my designer shoes for Nikes but the result should be the same-when am I going to wake up in an overstuffed feather bed next to some little hairy beast surrounded by extended family and the hired help?

I left Miss Cathy with her lifeline alert necklace (more powerful than ruby slippers) so I feel like she has some protection. I called to check on her yesterday and she sounded as happy as the mayor of Munchkin land. She could have been sitting there playing with her own feces for all I knew but that’s a stretch in behavior (thank the lord for now) but I am cognizant of the fact that one can give “good phone”-meaning that a lot people that are ill can “sound” healthy and capable over the airwaves.

So, I’m conscious of that and I also know that she couldn’t deteriorate that quickly in just a few days so I’m listening for things other than the scatological. Is she present? Is she clear? Does she sound calm or confused?

Once I ascertained all of that I could confidently sit back and let her tell her latest story of what hillbilly relative did what to whom wash over me and feel confident that I could hang up the phone and start skipping back down the yellow brick road.

Monday, March 28, 2011

A lifeline

Since the meeting with the neurologist things around here have been going pretty smoothly. Miss Cathy is still doing her “victory lap”; calling everybody she knows to tell him or her what the doctor said (or more accurately-what she “wanted” to hear him say).

Anyway, she called me into the living room recently to tell me that she had an idea about how to make “me” feel more comfortable about her staying home alone (what she doesn’t seem to realize is that I am “so fine” with recent events, I went through whatever upset and changes I was going through and now I’m moving on-next!).

She suggested that “she” should get a “medical alert necklace” (you know the one, you’ve seen the commercials on TV late at night, “Help! I’ve fallen and I cant get up!”) Well, I was surprised that she came up with the idea but after thinking about it I gotta say that I was impressed (even if “I” am the one that is going to have to look into getting it).

So, I added researching the “necklace” to the list of things to do. Tops on that list were contacting lawyers to get information about her estate planning. It’s not like there’s much of an “estate” but what little there is has to be carefully managed so that Tony and I can do the right thing by her and (hopefully) set up the future so that when she needs long term care everything is in place for her to take full advantage of Medicaid.

I got a list of lawyers from The Alzheimer’s Association and they also suggested I check out the NAELA (National Assoc of Elder Law Attorneys) website. Unfortunately, the list from the Alz Assoc needed to be updated. A lot of the lawyers that I called no longer practiced or the numbers were wrong and the NAELA website had some incorrect information, too. But, I persevered and came up with about half a dozen lawyers in the area to contact. And being the good little “do-bee” that I am I called my local contact at the Alz Assoc to tell him about updating the list (hey, it’s the least I can do with all the help they have given me).

It took about a week for the various lawyers to get back to me (for some reason four of the six all called on a Friday). They all seemed “capable” (over the phone) and took a fair amount of time to talk with me about what I wanted to accomplish. I knew that I needed something to try to distinguish one lawyer from another since I didn’t have personal experience or a recommendation from someone who had worked with any of them. The Alz Assoc takes great pains to say up front that they are not endorsing or recommending anybody, they are simply providing information.

I had my list of questions to ask and I found a way of “testing” how knowledgeable they were so that I could separate the competent from the cash seeking by asking all of them about the “look back” that Medicaid does for all applicants (something any lawyer worth his salt should know about if they handle any elder law cases).
The “look back” is the time frame by which Medicaid considers personal wealth in determining who gets “how much” money from the government agency that will be paid out for a persons’ long term care (the correct answer: under the current guidelines the “looks back” covers looking into the last five years worth of a person’s assets and holdings (and not three years that some lawyers are still quoting, by the way.

If Medicaid is satisfied that a person did not dispose of property or assets in order to qualify for benefits they will appropriate the necessary funds for care, if they feel someone has assets of any significant value (a relative term) they can determine that the person should shoulder most or part of the financial responsibility for care until their resources are exhausted or Medicaid can put a lien on the property to recoup monies paid out for care after the person dies and the property is sold).

They all agreed that it was wise to start the process sooner rather than later and told me that we are lucky to have Miss Cathy’s support and co-operation. A couple of the lawyers told me horror stories of how family members were trying to do the right thing by their loved one with Alzheimer’s but the person was unwilling to cooperate or too far gone in the disease to be able to help. Some (because of the disease) had become paranoid, combative and stubborn to the point of sabotaging plans by refusing to sign documents or not agreeing to what was in their best interest. So, more often than not they leave a mess for the loved ones to deal with (and sometimes a huge bill for care-remember, long term care can run up to thousands of dollars a day).

I did find two lawyers that I’m felt comfortable enough talking to over the phone to want to follow up with. One lawyer in particular impressed me because she was the only one to suggest that there may be other ways of planning for her long-term care other than (or in addition to) Medicaid. She told me that Miss Cathy could be eligible for a Veteran’s Administrating Pension Benefit that is given to widows of war veterans, the caveat is that the deceased only has to have been enlisted during a time of war-the soldier did not have to have seen combat. If she qualifies, it could mean a possible thousand dollars a month more toward her care so that’s definitely something worth investigating.

This same lawyer invited me to a monthly estate-planning workshop that she holds in her office, the next one is on April 5th and I plan to be there. It will give me a chance to not only gather some information but to check out the lawyer as well.

As for the medical alert necklace, I found two companies online that l felt comfortable calling based doff their websites. The first was “Lifeline”, the one that advertises on TV and the other was a competitor that seemed to offer the same product a t a lower price but I just didn’t get a good vibe from them so I was leaning toward the more expensive company that originated the product.

The good news is that their local rep called to give me a much better deal than was quoted to me originally (so be sure to have the Lifeline agent give you the contact telephone number for a rep in your area-there could be deals and specials that you can take advantage of to lower the cost of the service).
I signed Miss Cathy up, the equipment (which just plugs into a telephone landline power source to monitor activity in addition to the necklace) came on Saturday. I’m waiting for the fist of April to do the installation. I’m planning a trip to New York and Kansas City for two weeks starting on Aril 7th so Miss Cathy gets her freedom (she was sooo happy when I told her my plans).

She said that she changed her mind about the medical alert necklace after she found out how much it cost. Well, I said using her own words against her when she told me that, “Too bad, it was your idea and now I happen to think it’s a good one so we’re keeping it and you’re going to wear it.”

Whether or not she does remains to be seen-all I can do is all I can do and today I’m okay with that.