Tag Archives: realtionships

The UPS man (should) always rings twice

Posted in July by

I came back to Miss Cathy’s the other day after running errands to see a notice that UPS had tried to deliver a package. As I pulled the “ups-it” off the door I saw that the “No answer” box had been checked. I had been expecting the package (a pair of cargo shorts from Macys online-nothing work related or that couldn’t keep but “I wants wat I wants”). I was as disappointed as a kid on Christmas morning that gets socks instead of an Xbox.

My options for re-delivery were to reschedule (and wait) or pick the package up myself-not exactly Sophie’s choice but still….

I was pissed because I knew mom had been home when the UPS man came so there was no reason that the package shouldn’t have been there waiting for me. I sulked into my room-childish I know but hey, apparently there’s not much going on right now in my life if a delivery from Macys is what makes my day.

I realized I was being silly and was prepared to let the whole thing drop until later that day when Miss Cathy said something that annoyed me (quelle suprize) so (petty Mr. Pettington that I am) I brought up UPS. Without missing a beat she sidestepped any responsibility for the missed delivery like Wonder Woman deflecting bullets with her magic bracelets.

“I didn’t hear anybody knock,” she said dismissively, ”You know they just tap, tap, tap on the door anyway.”

Funny, I thought to myself, it’s awfully curious that she couldn’t hear the UPS man knocking on the door in the middle of the day when old eagle ears could hear me parking my car, walking up the steps and pulling out my keys when I come home late at night (and she’d been fast asleep).

I found it interesting that she was pleading Helen Keller when the last time this happened she had a completely different rationale. Back then she’d taken the position that she wouldn’t go near the door if she weren’t expecting someone. I tried to tell her that a robber or murderer wouldn’t be so polite as to knock so chances are whoever was on
the other side was harmless-or a Jehovah’s Witness.

Besides, the door is made of solid steel with a New York worthy Medeco lock so she was well protected as long as she didn’t open it.

I was annoyed about the whole thing but it’s not like I kicked the cat (and before you forward this post to the ASPCA I’m just joking and a) we don’t have a cat and 2) I’m still grieving the death of my 18 year best friend, Missy the cat.

I went about my day and later decided to call UPS to negotiate how/when/where I could pick up my package without having to wait another day (heaven for fend I deny the world the sight of my skinny calves).

Soon after I got off my cell Miss Cathy came to my door. “I have something I need to talk to you about” she said (Never a good opener where she’s concerned-right up there with the infamous relationship killer “We need to talk”).

“You know this wouldn’t have happened if you would have bought that doorbell like I asked you, too.”

So, now it was MY fault-touché, the best defensive is a strong offense (no matter how offensive).

“I can get it myself if it’s too much for you to do,” she said, meaning the doorbell-not the package. “I’ve asked you time and time again and you just ignored me and I know you heard me” Clearly, she was on a roll, “And I didn’t appreciate when you said, “you don’t need one-no one comes to visit you anyway”.

Why….I was stunned. First of all I didn’t know what had set her off since I wasn’t…even…talking…to…her and “bee” I don’t remember saying anything as catty (or mean) as “no one comes to visit you anyway” (not out loud at least…I mean, it did sound like something I would say).

Honestly, I don’t remember if I said it or not but that wasn’t the point. She went off and I went to my happy place. I agreed to buy a new doorbell “soon” and got the hell out as soon as was politely possible.

My trip to the UPS customer center was like being at the DMV; the line was long and the workers at the counter were surly and lethargic. An hour later I had my fashion in hand and headed back knowing that I was going to be getting several more deliveries in the days ahead (what can I say…online shopping is my new addiction).

The next day I put a post-it of my own on the door that read, “UPS: Please Knock loud and Knock twice, Elderly inside, Thank you”

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

Good night moon ( Good morning Miss Cathy)

Posted in May by

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”.

He said, she (thought) she said

Posted in May by

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.

A lifeline

Posted in March by

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.

Rx for change Part II

Posted in March by

As Miss Cathy “sat” hugging the neurologist, Dr Alemayehu, for what she perceived was her “victory” over hearing that she was healthy enough to stay by herself, I sat in the corner torn between congratulating her for “winning” (when I didn’t realize there was a competition but I was sure as sh*t starting to feel as if there were-and I’d better catch up fast, “Nobody sticks Baby in a corner!”) and resenting her for seeing me as some sort of adversary that she had to best. I wanted to slap the smug, satisfied expression off her face (do I really need to put the “it’s just a joke/ I’m anti-violence disclaimer in here again?”), hand the doctor my keys, wish them both “God’s speed”, get the hell out of there and boogie back to my life.

But, if I did that, then what was the last year all about?

Digesting this new information made me wonder, “Had I over-reacted (and over-reached) by my decisions and actions this past year?” Had I got it so completely wrong?” And, if I got “this” so wrong, what else in my life was suspect? Suddenly “her” doctor’s appointment became “my” existential crisis.

My ego (and personal issues) aside I knew in my heart of hearts that this situation was ultimately about Miss Cathy and not me. I broke up the “love-fest” to tell the doctor that my only reason for being here was for my mothers’ well-being and whether I agreed with what I heard or not I was going to go along with what he advised.

I made clear my objections, cleared up some of Miss Cathy’s “tortured tale of confinement” and told the doctor the reality of what I was dealing with from my perspective and asked him what I should do. I tried to say this as calmly as possible but the ‘spat’ Miss Cathy and I had earlier had put me in a less than most diplomatic mood so it was hard to find words that weren’t “damning”. I was getting a little overwhelmed with emotion because (frankly) I felt betrayed by her.

The doctor’s focus was Miss Cathy (as it should be, she is his patient after all and I am not) so when he did acknowledge me it was to say that we’d never met and I (surprised and a little offended) had to remind him that I was the one that asked for him to see Miss Cathy in the first place a year ago and “I” was the one that met with him to go over her diagnosis (Hey, it’s a quibble, I know, he probably thought I was my three inches shorter, fifty pounds heavier brother but hey, the man meets so many people).

I could really care less if he remembered me or not-I just wanted him to listen to what I had to say and to (seriously) factor that in as he assessed her care (and not blow me off like some “Johnny-come-lately” well intended but mis-guided family member with no time “in the field”). While he seemed very matter of fact about the list of things I presented (that I thought) justified her not ever being alone, he explained that his focus (for right now) was that her biggest challenge was that she has short term memory loss and since she’s regained (after her fall last year and knee replacement surgery) most of what she needs to function independently day to day he felt comfortable with his decision.

He said that I could go out of town, leave her alone at home and I (or Tony) could check up on her by phone. He advised that we shouldn’t involve friends or other family members just yet. He said that to so might overwhelm her (it goes against my better judgment but hey….Okie-dokey doctor).

It was interesting (on some level) to watch the doctor take it all in as he listened to both of us; one, the parent (his patient) spouting what she knows to be “right for her” and wanting his approval and the other, me, the adult-child, “advocating” for what I feel is right-and in this case, advocating for Miss Cathy (against Miss Cathy) and wanting him to see that I had her best intention in mind and was not pursuing some personal agenda for my own benefit. I wondered how many times a day he goes through this.

He said after listening to her and observing her body language that “shuffling her around” from place to place causes her so much anxiety that it’s better to let her stay at home alone. He reminded me that Alzheimer patients thrive in their own environment and respond well to structure and routine and can deteriorate faster if stressed, anxious and in “unfamiliar” surroundings. So, clearly it was in her best interest to keep her at home where she is happiest.

Satisfied that she had the doctor in her corner Miss Cathy asked if she could drive. She’s been itching to get back behind the wheel of a car ever since I moved back here (and I’m sure our ‘spat’ about her backseat driving was fresh in her memory, too). As I write this I wonder if it’s not the driving that she wants so much as it’s the control of the situation -any situation, since she probably feels she’s losing control in so many other aspects of her life.

It got a little confusing at this point because the doctor said that he saw no problem with her driving “locally” (to the market or to a friend’s house nearby) but then (after I interceded and told him of her real intent-which was to do as she damn well pleased) he said that it was NOT a good idea-especially when she told him she wanted to go out and buy a new car.

Not hearing what she wanted she started to get a little “pissy” and she said she still had a valid driver’s license that was good till 2014 (as if that was some sort of chess piece she could play). His advice to her was to not waste money on buying a car (new or used) because it won’t be too long before she’s not able to drive at all. The doctor told her that “he” had the right to report her to motor vehicles and her license would be revoked if/when he determined that she was no longer fit to drive-checkmate.

We’d been with the doctor for quite awhile and I never really found a better segue so I had to ask, “What do I do if she hits me again?”

Miss Cathy gave me a look like she couldn’t believe I’d “ratted” her out like that. Man, was she pissed off (and embarrassed). Little things like hitting your child are not to be discussed “outside” the family. She tried to laugh it off, talking to the doctor “entre nous” as if the whole thing was insignificant but he wasn’t having any of it, “You have a bit of a temper don’t you Mom?” he said. Then the doctor turned and reminded me that increases in anger and paranoia are common in her condition and to try not to take it personally (easier said than done but I nodded anyway).

He lectured her on controlling herself and her temper. He told her that it wasn’t wise to alienate the people that are trying to help her-especially her son. He told her to start appreciating all that I’d been doing for her, too. He said that as a foreigner himself he was surprised when he came to practice in America how many of his patients are abandoned by their families and left to deal with their illness on their own. He told her how lucky she was to have my brother and me, how fortunate that we would WANT to take care of her the way that we have.

“I see many patients everyday, some in later stages of the disease, in very bad shape and they have no family or no one to take care of them”, he said very solemnly, “You are very lucky.” It felt satisfying to be acknowledged but it was a little sad (to me) that she had to be reminded of that fact (not that she isn’t grateful,she is-she’s just not cooperative).

He stood up to leave the room for a minute but before he did he gave her a piece of paper, a pen and asked her to draw the face of a clock and to put the hands at 10:30. When he came back he took the paper from her and he seemed satisfied with what he saw. He showed me her efforts and explained to me that while the drawing was crude and shaky it clearly indicted to him that she had not progressed any and was maintaining at “stage one” very well.

I don’t know, it was all just a little much to “take in” at one sitting. It’s not like I was vested in her being ill but I had been operating under the assumption (and medical advice) that was very different from what I was hearing now. So, as I sat there I started to feel strange-like I “needed” her to be sick(er) so that I had purpose-how f*cked up is that? I mean, wasn’t all of this suppose to be about her (and for her) anyway? Wasn’t the main reason I was here to help her to be as healthy and happy as she could possibly be given the circumstances (as I understood them originally anyway)? So, shouldn’t I have been over-joyed at the news that my mother could “more or less” take care of herself and that the doctor was using words like “high functioning”, “capable” and “independent”?

I mean, any rational person reading this or someone that has a loved one with dementia and heard those words would be ecstatic so why wasn’t I? I found it all very confusing. So, to be told there was less “care” to “give” I had to ask myself, “Where does this leave me?” All I heard was that I was “not needed” (as much) and I suddenly become very protective of my new identity as “caregiver”.

Of course part of me is ecstatic that I can go away for longer periods of time and not feel guilty, it’s just going to take a moment to re-group and get with the (new) program. I knew coming into this that things were going to shift and change (and not on my schedule) and this was one of those times. Moving forward I’ll get a chance to regain some of my life back as I continue to figure out what the “new normal” is for me.

So, finally, I can’t hope but think that for however long it lasts this new prescription for change is a good thing for Miss Cathy and for me, too.

A taxing experience

Posted in March by

I’m sitting with Miss Cathy at HR Block while she’s having her taxes calculated. She’s been coming here for years and uses the same tax preparer, Mrs. Ross, who greeted her with warm familiarity. We sit down in her cubicle and begin the annual ritual (like so many Americans) of seeing how much she can get away with deducting and waiting with baited breath-my, what an arcane expression and what does it mean exactly? How does one “bate” breath?).

Anyway, we’re waiting to see how much she can get back as a refund (which most people think of as some sort of “year end bonus” and Miss Cathy is no exception, she thinks of her tax refund as mad money that she can spend guilt free.

As Mrs. Ross adds and subtracts figures on her computer the ladies talk and catch up since they only see each other once a year (and it’s the polite thing to do whether you’re interested or not). We all know Miss Cathy is very social and loves to talk, talk, talk-having just met Mrs. Ross I have no clue as to her social sincerity.

So, talk they do-and listen I try not to. It’s kinda like fingernails on a chalkboard listening to Miss Cathy sometimes, especially when she recounts (her version) of her surgery and rehab. You know how it is, it’s the same for any two people (married, dating or even friends) that spend (a lot of) time around one another and then socialize together, you get to a point where you feel like your ears are going to bleed if you hear the same story (told in the same way) one more time. And for some reason she’s started to show everybody she encounters her knee surgery scar.

I brought earphones but I can’t totally “block” out (no pun intended) the entire conversation because I am, after all, here to help. So, I’m writing to you and listening to them, trying to filter out what’s irrelevant and helping out when necessary. To her credit, Miss Cathy has done a pretty good job of collating her records and files for this meeting and seems prepared.

I looked over at her “record keeping” and though it looked kind of Helter-Skelter to me, fortunately she understood (most) of what she’d written. I’ve noticed going through her correspondence that I can see a marked difference in her handwriting and writing skills. I was up at the rec center at the complex yesterday and saw where she’d signed in the other day when she went up to ride the stationary bicycle (first time she went outside of the apartment to exercise in about four months). I was surprised at how labored her handwriting seemed, less fluid and confident than I remembered. It looked like the scribbling of a frail old woman. When did that happen?

Aside: Mrs. Ross just added up what Miss Cathy paid in meds for the year and it’s 787.74! Jeez Louise! And that’s a greatly reduced co-pay because she has great insurance and Medicare. She’d (or we’d) be living hand to mouth if she didn’t have any insurance and we had to pay for all of this out of pocket.

The meeting lasted about an hour and then we were on our way, I walked ahead to put the files back into the car seeing as the fair-wells were taking as long as the greetings.

All totaled Miss Cathy’s 2010-tax refund of a whopping $3.00. I don’t know what she’ll “treat” herself to for three bucks but I’m sure she’ll think of something.

Welcome back, your dreams are your ticket out

Posted in February by

I haven’t seen Miss Cathy is about three weeks since she went on her sojourn down south so I drove over to Tony’s last Saturday to pick her up and bring her home around 5pm. I was supposed to pick her up later that night but the schedule changed at the last minute (unbeknownst to me till the last minute, it shouldn’t really matter but you’ll see why it’s a factor a little later).

I get over to Tony & Co where he and Suemi greet me at the door with hugs (nice, expected). I make a little joke to Tony about “…..and so it begins” as I walk down the corridor and into the kitchen where Miss Cathy is sitting. Imagine my surprise when instead of standing and giving me the warm embrace and a kiss hello I’m expecting, she rises out of the chair with a sour expression on her face (and I’m thinking, “Is it me or does she look a little ‘off’?”) and as I lean in to hug her she starts to hit me. Believe me the body blows she delivers feel more like a couple loaves of bread being thrown against my sides then anything resembling pain-but still.

I’m more confused than anything else, is she serious or is this suppose to be funny? I pull away thinking she’s doing one of her “ha-ha this is how we show affection” routines (she usually reserves the rough stuff for Tony) but when I look into her eyes (the right one-the good one) I see that she is seriously pissed off and those were not “love taps” she intended to delivery.

I laughed nervously (what else could I do-slug her back?)

Disclaimer: For all of you who just read the aforementioned “slug her back”, the phrase was intended for comedic purposes only. The author abhors real violence in any form but finds the use of such imagery, terms and phrases funny in the context of “fantasy, wish fulfillment, thoughts, daydreams or purposes of enhancing the narrative”.

Now back to the weekly blog……

Before I could ask if she’d completely lost her mind she says,” Now that you’re finally here I’m gonna tell you…. no, now that I’ve got both of you here (looking from me to Tony) I’m gonna say this just one last time-when I get HOME I’m not leaving NO more.”

“Oh my,” I say,” You went away and came back quite the cantankerous old biddy, didn’t you.”

“Yeah, well, you want to fight about it?” she asks.

“No,” I say in a surprisingly calm voice,” I don’t fight anymore.”

“Oh, you don’t huh, well that’s good.” she said, very satisfied with herself.

“No, I don’t fight but that doesn’t mean that I won’t win in an argument or disagreement with you.” Having said that (and still not quite sure what just happened) I turned to Suemi to tell her that I changed my mind about tasting the food she’d made and offered me before Miss Cathy turned into Evander Holyfield.

Suemi and Tony had been standing there catatonic during our little Punch and Judy act but she came alive, grateful for something “normal” to do like micro waving food. I could feel Tony’s eyes on me so I gave him a “hey, whatta you gonna do” look and sat down.

“What are you eating again for?” Miss Cathy snapped,” I thought you said you just had something before you came over here.”

“I did and now I’m going to be polite and sample some of what Suemi was kind enough to make for me.” I said as condescendly as possible. I wasn’t hungry but I knew my sitting down to eat would piss her off. Besides, I needed some time to recoup and recover.

Tony took me aside a little later to tell me that she had been fine on the drive from North Carolina. It wasn’t until she found out that I wouldn’t be at Tony’s house upon their arrival that she started to get worked up, and when the horrible traffic on I-95 made me that much later he said that she really started to get “snippy” and talk smack about me. Tony did his best to reason with her, reminding her that the plans were changed last minute, that I couldn’t be reached in time, traffic at that hour, blah, blah, blah but she was too far gone to care.

And so, it’s left for me (Tony and Suemi) to record and register her outbursts and distinguish them from what we knew her to be (how do I say this?……umm, and I say this with love-kind of “not nice sometimes” as she became an old lady) and from what is exasperated by the Alzheimer’s. Remember, “Anonymous” (the relative that called me from North Carolina) said that they noticed an increase in her random volatility, too. We’re going to the neurologist’s office next month so I’ll talk it over with him to see if an adjustment in meds is necessary or not.

We loaded grumpy into the car for the drive home along with her accoutrements. On the drive to get her I’d already resigned myself to listening to whatever she wanted to complain about her trip ( kind of a “welcome home” present from me) and sure enough she spent 45 minutes of an hour drive bitching about a falling out she had with one of her sisters.

I half listened and started to sing the theme to the 70’s TV show “Welcome back Kotter” over and over in my head-between “grunts”, “oh really’s” and “what did she say?” to keep up my end of the “conversation”…..”Welcome back!”

Paradise lost (and found)

Posted in February by

It’s been a little over a year since the diagnosis and about seven month since I moved in with Miss Cathy (but who’s counting right-well, obviously I am). So I guess it’s normal to be feeling a little malaise. It’s interesting that while I’m very clear that I know this is where I’m suppose to be I’m amazed that I’m still adjusting. It’s not like I thought this was going to be a cake walk, quite the contrary, I knew it was going to be hard-I just didn’t know “what” was going to be hard and “how” it was going to affect me.

I’ve been back almost a week now from a much needed vacation at the Paradise Pointe Island Resort in San Diego, CA. I have to say, I didn’t much miss being in the cold on the East coast or the chill that was in the air between Miss Cathy and me in the days leading up to our different destinations (she: down south-me: to the mid and west).

After spending a few days in Kansas City, Chad and I fly (between snowstorms) to the resort for five days of heaven. The trip was just what I needed it to be: long, quiet sunny days and starlit nights. I didn’t do much but walk on the beach, eat at one the island’s two restaurants (a lot), read, sleep and I did the requisite time in the jacuzzi.

I must admit I did very little (or no) thinking about life back here (at the laugh factory). It’s amazing how quickly I just shut it all off, I wonder if parents are able to do that if/when they can manage some time away from their children?

All’s quiet here at the apartment because Tony called to tell me that Miss Cathy decided to stay in North Carolina for an extra week. I swear to God when he told me that I felt like a death row inmate getting a reprieve from the Governor.

It’s also given me some time to sort out the confusion I was feeling before I left in search of paradise. In addition to worrying if I’m doing the right thing by Miss Cathy, selfishly what I think I’m having trouble dealing with is the thought that I’m looking at (and dealing with) my own future.

We all know that Alzheimer’s could be hereditary so I could be headed down the same road-except I don’t have any children to take the wheel and steer me in the right direction when I drive off into the dementia ditch. Oh my, listen to me, I can hear my grandmother saying, “Don’t worry about the mule going blind!” (Translation: the worst hasn’t happened so there’s no point worrying about it now).

As much trouble as Miss Cathy is having accepting her situation who’s to say I won’t be worse if (heaven forbid) I end up with Alzheimer’s. So, with that thought in mind, I’m trying to be more empathic and patient,“ There but for the grace of God go I”. A lot was left unresolved before the break but I’m back from my vacation, rested and ready for round two (this being the second time I’ve gone away for one of my quarterly “mental health breaks”).

Yesterday, I was out on long walk turning all this unresolved “stuff” over in my head when I got a call from a relative (who wishes to remain anonymous. “Anonymous” called to tell me that she’s been spending a lot of time with Miss Cathy and she thinks Tony and I are doing a wonderful job of caring for her (regardless of Miss Cathy’s apparent bitching to the contrary that we’re taking away her freedom and she’d be “fine” on her own). “Anonymous” also made a point of saying that we’re doing the right thing by NOT letting her stay by herself. She told me that from what she’s observed Miss Cathy is fine for the most part but she does have her “moments” (and you never can tell when that’ll be) when she gets confused or something just isn’t “quite right”.

“Anonymous” also said that she’s noticed that mom is very quick to temper and appears to be sitting on a lot of anger.

I gotta say, I was quite surprised by the call but since I don’t believe in coincidences I took it as a sign (and an unsolicited testimonial) that we (Tony, Suemi and I) are doing the right thing. I was almost convinced that maybe Miss Cathy had a point the last time we talked/argued (albeit a very loud one) that she could stay by herself sometime.

I was glad to get another perspective, it made me realize that it gets kinda cloudy here living in the “fish bowl”, sometimes you can’t see too clearly and the fish ahead of you looks like it’s making sense so you start to follow it-even if it looks like it’s trying to jump out of the bowl. So, armed with this new information and support I think I can hold onto the serenity I found at paradise Pointe. I just have to maintain some distance-and talk to some other fish.

Bromance

Posted in February by

Tony and William are my brother and bro respectively, one related by blood and the other by biology (7th grade bio to be exact). There’s no way I could be doing “this” without them. I know that there are support groups I can turn too and I do have a lot of friends that I can call but there’s nothing like having people here in the trenches with you. I know this isn’t a battlefield and believe me, I know I can sound like a whining asshole sometimes but they get “it” and they get me (that alone helps so much).

I’ve known William since I was twelve years old. He tells the story of the day we first met in gym class, I was (apparently) sitting on the floor hugging my knees to my chest (trying to make myself invisible I’m sure) and he came and sat beside me, said “hi” and we’ve been best friends ever since. I call him the keeper of the memories because he remembers everything about our shared history. He has the most remarkable memory, not just about us-he remembers everything.

Even though life had very different paths laid out for us; different colleges, living in different parts of the country, even losing touch for a few years here and there, the bond we formed oh so many years ago is just as strong,so we always found or way back to each other. Now that I’m on the East coast we’re living about forty minutes apart for the first time in our adult lives, which is great.

Years ago Williams’ father go sick so he made the choice to build his house next door to his parents so that he could be there to help out. Through the years he’s taken on not only his father’s care but responsibility for his mother’s wellness, too. So, he’s not only a great support system for me, I’m finding that he’s one of my guides through the process of learning how to become a caregiver. The specifics of our parent’s situations are different but at the end of the day we’re both adult children of parents that need us.

We had a chance to spend the day together not long after my discussion/argument with Miss Cathy. Our outing couldn’t have come at a better time. When he picked me up for our day together I was ready for some “me” time (translation: I just needed to get the “flock” outta that apartment). I sat in his car and listened as he drove and told me the latest story about his parents-some mishap over what was served for dinner. I don’t know, I could feel my body relax just by listening to him tell me all the funny, frustrating events of his day. It’s not that ”misery loves company”, or that I was happy to hear that things aren’t always perfect with his folks, no, it’s more like war buddies sharing stories of being “in country”. It’s not stuff you tell just anybody, lest they think you’re whining, bitching or complaining-which you’re not, you’re just “telling it like it is”, reporting from the “battle field”. He didn’t know it at the time but his telling me about his day made me feel better about mine.

Later, over dinner I told him what was going on with Miss Cathy, all about the trip and her announcement that “she’s not leaving her house ‘no more after this trip ‘down south”. We laughed about it, not at Miss Cathy but at the similarities because William had just driven his parents to North Carolina over Christmas and let’s just say,” it wasn’t a road-trip Norman Rockwell would be painting any scenes about”. I felt better just talking to him about everything because he knows me, he knows Miss Cathy and he knows the situation all too well.

As for my brother, Tony is my only sibling and he’s older than me by eleven months and one week. We were both born on a Tuesday in January, he in 1958 and me in 1959, so for three weeks we’re the same age-we’re what they call “Irish twins”. Since we were so close in age Miss Cathy used to dress us alike (she said it cut down on bickering about “who got what”) and since we looked a lot alike early in our childhood people thought we were twins. I don’t know if this gives us any “special” bond or connection but unlike William, Tony and I couldn’t be more different. None the less, even though we’ve grown into very different men from the fat, little brown butter-balls that people couldn’t tell apart as kids, we remain extremely close without having to communicate much at all.

After my day with William I called Tony to let him know what was going on. Like I said, we don’t talk often but we do call to touch base. I always think of Tony as someone that I know will be there for me no matter what I need (which in itself is a great feeling) but I forget that he doesn’t have to be called to slay a dragon or to run into a burning building-I can call him “just” to talk.

Talking to my brother after my time with William was the one-two punch I needed to make me feel a whole better about the choices I’ve made so far. I told him how I was starting to doubt “our” decisions about how we’re handling Miss Cathy and her illness. I told him that she was starting to make sense (which in and of itself should have given me pause). I told him that I was kinda confused and not so “certain” about all the pontificating I’ve been doing-to her and at her.

In no time flat he straightened me out, and I realized that I’d started to feel like Ingrid Bergman in “Gaslight” but Tony snapped me out of it before Charles Boyer could murder me in the thick London fog….RIGHT, that was a movie and I’m not Ingrid-now back to real life. What Tony did was to remind me of all that’s happened in the past year, and to give me some distance from being “in it” with her day in/day out. He did a great job of wiping away the clouds of doubt that had been gathering around me.

He reminded me that her behavior hasn’t been normal for a while now and it crossed the line of being “Oh she’s just getting forgetful” a long time ago. Also, she’d been going to great lengths to keep her decline from us, and all of this was before the fall last year that precipitated her Alzheimer’s diagnosis.

It’s funny, but if you live with someone and they are your focus you can lose some perspective (at least I was starting to). I’ve got a little book knowledge but very little experience caring for someone with a degenerative disease. So every know and then it gets confusing, “do I know what’s best for this person?” “She seems fine (now) so why deny her the freedoms she wants?”, you know, questions like that. I think that if I’d been checking in with Tony on a more regular basis then I wouldn’t have some of these questions or insecurities. His confidence in what we’re doing reaffirmed my faith that everything that can be done is being done.

I was also grateful and surprised when he offered to drive Miss Cathy to North Carolina for me. All I have to do is drop her off at his house and he’ll take it (her) from there-Hal-lay-loo! He said it was the least he could do because he appreciates all that I’m doing.

Just like my time spent with William, I hung up the phone after talking to Tony feeling so much stronger. I’m lucky to have these guys in my life-I’m gonna need them.