Tag Archives: Life

Wiz-zed

Posted in April by

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.

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.

Rx for change Part I

Posted in March by

I took Miss Cathy to her neurologists’ appointment last Monday and I walked away from the meeting feeling like my head was the one being f*cked with. The day had started out a little a rough because (unfortunately) we had a little spat in the car on the way (I couldn’t take her back seat driving and “snorting” one more minute and told her so). It was a big step “backwards” from the good will and wonderful feelings that had been in place since “the talk” a couple weeks ago but I guess that bubble had to burst at some point.

So, we, or should I say, “I” entered the meeting “feelings” first. It was her third visit to the neurologist, Dr Alemayhu (her last being nine months ago). He wanted to talk with her and observe how she was progressing. I hadn’t seen the doctor since his initial diagnosis over a year ago after the fall and hospitalization that brought her condition to light. He’s the specialist I had brought in to examine her when I got to the hospital a day after she was hospitalized. Even though she was being hydrated and her physical needs were being met, I just felt something wasn’t quite “right” and I wanted someone to examine her mental state and sure enough it was Dr Alemayhu who came up with her Alzheimer’s diagnosis.

The exam room was your typical, generic space with an exam table, posters of the human body (dissected) and art (which should have been eviscerated) as well as three chairs. “Where oh where to sit?” I wondered till Miss Cathy took an armchair that was positioned right across from what was obviously reserved for the doctor, “Well played” I thought. I parked my carcass off to the side is an armless chair, a supporting player in the tableau that was about to begin.

I had encouraged her to write down any/all questions she might have about her condition back when we had “the talk”. She had so many questions that we couldn’t answer them all (again) so I reminded her that we were seeing the doctor soon and it would be a perfect opportunity for her to get what she was after. I shouldn’t have been surprised by what happened in the doctor’s office–but I was.

No sooner had we sat down with the doctor and she was off campaigning for her “freedom”. Her first question was less a query then a statement of discontent and frustration about the difficulties of being “uprooted” and shuttled back and forth whenever I go out of town for work and how difficult it is to have to sleep in strange beds (the guestroom bed at Tony’s is now somehow “strange”).

She told him how she had to take her own food because you never know what “strange” food there may be wherever you’re going and she stressed how expensive food is and how she didn’t want to be a burden on “anyone”. She was packing on the adjectives and hand wringing to beat the band-she may have Alzheimer’s but she’s a damn good actress when she needs to be-Meryl Streep ain’t got nothing on her. If I wasn’t so pissed off (and hadn’t heard it all before) I would have felt sorry for her, too.

I thought, ”I just can’t sit here and let her get away with representing the past year the way she is.” I’m well aware that she’s entitled to her interpretation of events and her feelings are her feelings AND I know that this is all being filtered through the lenses of someone with dementia ……but jeez! It still hurts to hear that your mother is unhappy and miserable with the decisions and choices that “you” are making for her. I told her (for the umpteenth time) and the doctor (for the first time) that my sole purpose in moving in with her was so that she could be happy in her own home for the time that she has left before the disease progresses but if my being here (and making the choices for her safety that I have made) is only making her unhappy then why am I here?

Miss Cathy said that she appreciated all that my brother and I have done for her but she knows best what help she needs-and when she needs it. It quickly became apparent that her “check up” was turning into a counseling session, with the neurologist substituting for a shrink (which is ironic because I got the impression later on that Dr Alemayhu wasn’t a big fan of psychiatrists).

Several emotions (anger, hurt, disappointment, sadness, betrayal) flashed before my eyes like stills from a movie reel while I was sitting there listening to her and watching the doctor “react” to her. Remember how I’ve said that it upset me (to no end) when Miss Cathy would talk about how her time staying at Tony’s was like she was interred in a concentration camp or something, it made me feel just horrible knowing the truth of the sacrifice, love and patience that Tony and Suemi made to care for her and all she seemed to do is characterize the time in that hateful, dismissive way. Well, this was worse because she wasn’t talking about somebody or something else-she was talking about “home” and that’s where I am-everything she said sounded like a direct slam against me.

After listening to her tale of unhappiness, Dr Alemayhu surprised me by agreeing with Miss Cathy that she’s perfectly fine to stay on her own when I go out of town. My first thought was that if he knew the “full” story (and not just her version) he wouldn’t be so quick or so casual with his recommendations-after all, he’s making life-changing decisions after spending “minutes” with Miss Cathy (who for some reason he called “Mom” the entire time we were there) and I’ve logged more than five hundred, twenty five thousand minutes being with her 24/7 for the better part of a year.

I thought he’d reverse his judgment after I filled him in on the kitchen fire, falling down and hitting her head and other questionable behavior she’s exhibited over the last nine months. I sat ready for him to say, ”Oh, now that I have that information I’ve changed my mind.” But no, he seemed to dismiss most of what I presented as just “things that happen to the elderly”. “If these are just things that happen to the elderly, then why am I here?” I pondered, so I asked him. “Did I jump the gun by moving in with her?” I told him that it was my idea to be here (and I take full responsibility for my choices) but I was acting on information that I got from him and other doctors’ at the time and they all said that she shouldn’t live alone anymore.” While I sat waiting for an answer, Miss Cathy sat beaming during this exchange. She had heard what she wanted so she was content to sit back and drink in her newfound freedom and independence. Dr Alemayhu answered me by saying that while he agreed with Miss Cathy that there was no need for her to leave the apartment when I go out of town (at which point she interrupted to tell the doctor that what he said made her “happy” for the first time since this all began (over a year ago). She reached out and asked to shake his hand (and not being quite satisfied with that acknowledgement of her victory) she asked if he was a “hugger” and gave him an awkward chair-to-chair hug.

I found her gloating distasteful and a bit offensive. It was hard to watch (like a Jennifer Anniston movie) but I hadn’t heard what the doctor had to say to me so wait (and watch) I must.

More later…….

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.

Family matters

Posted in March by

We had “the talk” last Saturday, just Tony, Miss Cathy and me. Suemi decided to sit this one out, she was missed but she’s definitely a huge part of our “triangle of care”. It went surprisingly well and now I feel cautiously optimistic about the days ahead.

I was itching to get to the “real” talk as soon as we sat down in the living room but I was hard-pressed to think of a way to begin. Surprising I know, me, the guy that can talk to anybody about practically anything but not his time, I just sat there. I think part of the reason was that I was that I was just so keyed up after thinking about things for so long, and there’d been so much bad blood and tension lately that I didn’t know how to casually “kick“ off this discussion. Fortunately, I didn’t have to wait too long because Tony jumped right in, started talking and like Jackie Gleason used to say, “…And away we go!”

We hadn’t “rehearsed” or even talked on the phone after Tony agreed with me that “the talk” was necessary so we each had no idea what the other was going to say. So, I sat there listening to him talk to her about his concerns and I was very impressed. He was firm but loving and his words seemed to be carefully considered and his tone was that of someone that knew what he was talking about so you felt reassured (even if he was talking to you about things that made you feel uncomfortable). I wondered if I come across that way or if I’m as cold and callus as I feel sometimes-I sure hope not. Lord knows I could learn a thing or two about “how to engage without antagonizing”, so I sat back and took a lesson. He talked about his feelings and his concern that she wasn’t fully accepting her condition. He also covered all of what needed to be said about some business and property matters as well as the issue of updating her will.

There was a little discussion back and forth (between Tony and I) as to who was going to do what (I volunteered to do most of the research and phone calling because, well, because that’s what I do). Anyway, Miss Cathy actually took a moment to tell us that she was having a problem accepting her diagnosis. She said that if she “felt” that she was sick she would know and she would “tell us” and then she’d accept help-ours or the doctors. But since she didn’t “feel” sick she couldn’t understand why we were treating her the way that we were. I told her that unfortunately a diagnosis like her’s didn’t work that way.

Then I started to launch into my laundry list of examples of her behavior that were clear signs of her illness, not to mention reminding her about all the doctors she’s seen and their findings. Interestingly, about half way through I stopped, told her I was sick of having to justify her illness to her “the same way” (remember the definition of insanity is “ doing the same thing over and over an expecting a different result”) so, I took a new approach.

I asked her, “Do you trust us to act in your best interest?”

She thought about it then she said simply, “Yes.”

“Good” I thought, that’s a start. With that vote of acceptance, it was time to get to some of the more unpleasant things that needed to be discussed. I talked about her anger and (hopefully for the last time) her being in denial about her condition and the problems that denial creates for all of us who are trying to help her.

I told her that I was surprised she hit me when I came to pick her up from Tony’s and I felt she owed me an apology. The look she gave me when I made my request was a mixture of “I have nothing to apologize for”, “I was totally within my rights” and “ I can’t believe that you’re questioning my actions”.

That’s what I ‘saw” anyway, and my interpretation of her expression was somewhat confirmed when she said that she was “pissed off” when I came pick her up and she thinks that as a parent she should get to do whatever she wants, that we are “her” children after all (Miss Cathy logic). I’m not quite sure but I think she was trying to tell us that she had a “right” as a “parent” to hit me?! Umm, I don’t think so.

I told her that she didn’t hit us growing up (other than the occasional “spanking” when we were very young and wouldn’t understand much else) so why on earth should it be acceptable now? Besides, hitting is not something I tolerate- not from anyone and that’s what I told her. And just because I’m not going to strike back, but that doesn’t mean I’m going to stand for it either.

Tony jumped in after listening to her logic and reminded her that he’s a parent too and there are just some things you just don’t do-ever. He sat for a minute and pondered if he’d ever hit his kids and the answer was “no”, his children were now young adults and it would never cross his mind to touch either of them.

He also told her that he was angry with her for what she did “to his brother” and he could see that it was humiliating and hurtful to me, and that hurt him. I sat there and thought, “Wow, my big brother is standing up to “mom” for me.” I gotta tell you, that’s a funny feeling to have at fifty-two but it was endearing nonetheless.

She thought about it for a bit. We could see that she was seriously turning over all the information that was being presented to her. Finally she said that she could see where she was wrong, and that she would work on her temper, and then she turned, looked me full in the face and apologized to me.

I knew it took a lot for her to apologize and I knew it had to be incredibly difficult to listen to all we had to say, most of it negative and unpleasant bur she listened. One of the things that she said to us was that we didn’t understand because she was the “mother” and her role was to protect us. She’s said something similar to me (to us) before but this time I heard “something” different in what she was saying.

What I heard was that she was feeling that we were usurping her role as “parent” and if she didn’t have that “role” then who was she? How was she supposed to navigate through the life she has left if it’s not to be the one that “makes the decisions” and steers the course (for us).

I understand now that part of her resistance, rebelliousness and obstinacy was because she thought she had to fight for her role in the family, when in fact, her “role” is secure, it’s just how the players “act” that’s changed.

I told her she could relax, to take a good look at us-we’re both middle-aged men, that her “job” is done. I reminded her (as I have several times in the past) that this is all part of the circle of life and now it’s time for us to take care of her the way she took care of us. I said that no one was trying to take her place, she’d always be the matriarch of the family and that we bend over backwards to respect her and to make her feel loved, in fact, it was a testament to how she raised us that we’re doing what we’re doing now.

She said, “I see that now. I’m sorry for being rebellious but I think it comes from always being a parent and always being in control and not needing to be humble. But now, after this lengthy discussion I’ve decided that I’ll cooperate from now on. Conversation is a great thing, it helps you to think differently about a situation.”

“ I love you both very much and you two have always been first in my life, above everybody else. So, know that if I don’t act that way ,then ‘you know’ that I’m not in my “right” mind.”

“If you asked me to go to the moon, I’ll go. If you asked me to get on a space shuttle, I’ll get on it.”

All in all, I’d say that “the talk” went way better than I could have ever imagined. I looked out onto the balcony and could see that the afternoon was turning into early evening. It had been a “lengthy” discussion but well worth it. Just as I wondered to myself how we were going to wrap things up, Miss Cathy said, “ Okay, I’ll tell you like I tell Adele at the end of one of our looong conversations,“The End”.

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.

Up in smoke

Posted in January by

I knew Miss Cathy was going to bring up my trip and somehow, someway, some day when she did-she’d give me agida. I wasn’t sure when but I knew it was coming. And sure enough, a couple days ago it happened. I’d walked into the kitchen for a coffee refill and she was sitting at the counter with her “hot comb” straightening her hair. She said, “You’re counting down the days huh?” It was early in the am and I was still in my own little world so I didn’t really get what she was talking about so I said,” counting down for what?”

While passing a section of hair through the teeth of a very hot device she explained, “till you go to Kansas City.” The smell of burning hair was thick in the air as she used the comb to straighten her natural curls. The air would soon get thicker still for a whole “nother” reason.

“Oh yeah, that”, I thought, it’s not like I’d forgotten about my plans so much as I wasn’t bringing them up (at all in fact). I wasn’t talking about the trip because I was dreading the inevitable argument that would result. I know you’re thinking, “I’m projecting” or “I’m putting a negative out to the universe” or better yet “that on some level I ‘wanted’ the conflict.” But no, but NO, I’ve read my Deepak Oprah, I’ve had a Life-coach and know that we manifest the “story” that we tell and I’ve logged enough hours “navel gazing” during talk therapy to know fact from neurosis. So yes, I know all this and I also know that if YOU spent the amount of time with Miss Cathy that I have you’d think the same-it’s not “negativity” it’s “self preservation”.

Imagine my surprise when she said, “depending on the weather I’m going to go visit Tine while you’re gone.” Tine (Ernestine, “Tine” for short) is Miss Cathy’s youngest sister who still lives in their hometown, Henderson, North Carolina.

Well, she certainly “buried the lead” didn’t she? I was happy as could be for her but “practical me” was wondering, “how was she going to get down there?” and thoughts of me driving her “down South” didn’t exactly thrill me. I don’t know about you but to me it’s as if every mile I drive past the NC border takes a year off the calendar so by the time we’re in Henderson it’s 1952 down there-and I wasn’t born until 1959 so what does that say?!, oh well, what price freedom.

While I pondered her mode of transport she continued, “and I’ll tell you something right now (the mood in the room suddenly changing), if in two or three months you want to go someplace else you go right ahead but I am NOT leaving this house-no more!” (I could have sworn I heard a little sizzle off the “hot comb” but I can’t be sure.)

“Alrighty then, so, here we are, and here we go”, I thought. I put my coffee down, took (half) a deep breath and before I knew it (although I’d predicted it) it was October all over again. Remember, back in October when I told her about my first trip and how she tried for days to convince me that she was “well” and that she should stay home alone. She tried everything, even what I call the ”Five stages of persuasion”:

1)    Intimidation: One has to be loud and authoritative, this works best on small children with a vested interest in survival but not on adult children of parents who no longer pay your bills or wipe your butt for you

2)    Reasoning: This can only work if both parties are in denial about the disease or condition at hand

3)     Cajoling: This could include anything from the “buddy” approach in speech and body language to bribes of favorite meals or money

4)    Threats: These usually take the form of self-important statements that start with “Do you know who I am?” or “ You don’t know who you’re dealing with buddy” but realistically that can’t be backed up by any substantive actions)

5)    Self pity: This can include tears, mournful looks, pleas to God for help and as a last resort threats of suicide but once the “suicide” card is played one can’t keep throwing it down lest somebody calls your bluff

So, after going back and forth and over and over the same territory, I had to ask myself, “Was there anything different about this discussion/argument that was any different from any other discussion/argument we’ve had over the past year about whether or not she could or should be able to stay by herself for any length of time?”

To be honest, the answer was “no” but this time I just wasn’t sure-maybe I was tired. I found myself almost persuaded by her arguments and for the first time I wondered if she was indeed capable of taking care of herself alone for on week or more.

I mean, she made a strong case for it-in volume if nothing else. I listened past the anger and stubbornness, the denial and pride. She may not think I understand what she’s going through but I’m trying (I am HERE after all). To her credit she hasn’t had any accidents in months nor has she shown any lack of judgment that would put her in danger of hurting herself or others.

So, I was in a quandary, I had to admit to myself (if not to her) that maybe “we’d” (Tony and I) had jumped the gun here. Maybe she was “better” and all she needed was some time to get herself together after the events of last year. Could it be, could the doctor’s be wrong?

I mean, at the end of the day all I want is for her to be happy (and safe) and although I know what the doctors have said I’m the one living with her and from what I’ve observed she’s not doing too bad.

She was also doing her hair the entire time we were talking and it was somewhere around this point in our discussion/argument while she was straightening a section of hair that she singed the ends because she’d left the curling iron on the heat too long.

Nothing like the smell of frying hair to give you pause while you’re arguing. Since she’d just finished making a long winded, pretty well rehearsed speech about how well she could take care of herself I was tempted to use what had just happened against her but she was embarrassed enough (not to mention that it would take weeks for her hair to grow out so she’d be reminded enough of “how well she’s taking care of herself”).

So, I graciously said nothing while she sat there pulling at her burned follicles and let that be the end of the discussion/argument…….. for now.