Tag Archives: Random thoughts

Give me my flowers as I live so I can smell them

Posted in June by

I took Miss Cathy to another funeral this morning. They seem to be one of the few things she gets dressed and leaves the apartment for these days. Hey, I’m just glad she’s getting out and “getting some air on her” as she used to say to my brother and me when we were little and she wanted us out of the house (and out of her hair).

It’s a fact of life that as you get old-old people around you start to die. Years ago, I remember asking my Pop about death and dying after so many of his friends crossed over. There was a period of time when it seemed that almost every time I called home he (or they) were going to a funeral. At the time this phenomenon was specific to Pop because he was considerably older than mom so they had friends almost a generation apart.

As a former New Yorker, where going to a shrink is as common as getting your bagel with a “smear”, I was prone to “navel gazing “ and introspection after my time on the couch so I asked him how he “felt” about his peer group passing on. He looked at me as if I wasn’t as smart as he’d given me credit for and said, “Well, how do you think I feel?” “ After your last friend dies all you’re doing is waiting for your turn.”

Now I’m wondering if Miss Cathy is thinking the same thing because the mood has been a little funereal around here. It doesn’t help that the sermon she was listening to yesterday on Sunday morning television was all about “Love, peace and passing on”.

She doesn’t get maudlin and she’s not a very sentimental person but every now and then, she gets reflective-especially around occasions like the one today.

So, yesterday, I was surprised when she stopped me as I walked through the living room, past the reverend and his sermon, on my way out to the balcony to enjoy the cool morning air. She said she wanted to tell me that she never forgot a trip I made in my car from Kansas City a few years ago when I drove nonstop and slept in my car for a few hours before getting here as soon as I could.

She said that it touched her heart that I would show my love for family by dropping everything and doing what I did. I told her it meant alot to me to hear her say that. I started to well up watching her get misty-eyed.

“I believe in letting people know what they mean to me while they’re around to hear it”, she said, “some people wait till it’s time to go to a funereal to let what they feel be known.” “I don’t believe in all that, that’s just a “show”.

Then she looked me in the eyes and said, “Give me my flowers as I live so I can smell them.”

Spring in her step

Posted in May by

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

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

“Good for you!” I thought.

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

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

Well, color me surprised!

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

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

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

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

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

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

Continue talking

Posted in April by

I got back from my “time off” last Thursday and unlike my other trips where I felt refreshed and energized this time was different. Unfortunately, the minute I got back it felt like I never left. Miss Cathy was chatting at me the moment I opened the door.

Of course a lot of that has to do with me and not mom, my personal life seems to be in transition so I need to establish a secure foundation and some structure in my life here.

It was great to see mom, she gave me a big hug when I walked through the door and not long after she was gone to spend some time with Adele leaving me some time alone to unpack and unwind. I could see that she had taken good care of the place while I was gone and there wasn’t much to do till I had to take her to the doctor the next day.

So, Friday morning I found myself sitting in the orthopedic surgeon’s office with Miss Cathy for one of her follow up appointments after her knee replacement surgery.

The office was a hot, non descript room full of old people in wheelchairs, casts, canes or some other indication that they won’t be signing up for Arthur Murray anytime soon. Everybody seemed to be there at the same time for the same thing. We all sat and waited to be called back into an exam room, most people killing time by talking and/or watching whatever god-awful midmorning television show happened to on the flat screen TV perched high up on the wall.

What was frustrating was that you make an appointment and show up on time but the reality is that you’re not going to see the doctor until he was good and ready to see you.
It’s an abuse of power that I have little patience for in my life but this wasn’t about me-it was Miss Cathy’s doctor and her appointment and I try my best to stay out of it.

Since this all started last year she’s shown very little patience herself with being kept waiting and her reaction can range from mild irritation to a complete melt down in the waiting room (so the apple didn’t fall very far from that tree).

Rather than sit anywhere near the television I chose seats on the other side of the room, thinking it would quieter-but no, but no (just my luck) we ended up sitting next to a couple that wouldn’t shut the f*ck up. The husband was a big blowhard of man. He talked just loud enough so that everybody else could hear his voice (his favorite sound I imagine) but no loud that’d think he was at sports arena. He sounded like a reject from the Henry Higgins School of snobbery and pretension so unless the front row of Wimbledon I don’t think you’d see him there.

It was hard to “not” hear someone so intent on enunciating so clearly in such an affected and old-fashioned manner of speech, making everything he said sound like it was occurring in 1938 New England and not an orthopedic surgeon’s office in suburban Maryland in 2011. The wife was a mousy thing, hanging onto his every word out of obligation or inertia, the perfect female compliment to his pontificating; she was the woman beside (or behind) the “man about town”.

Earlier, I was bemoaning the fact (to me, myself and I) that anytime I left my room I’d be subjected to Miss Cathy’s ramblings (I know she’s lonely but egads, can’t there be a moment when the two of us are in the same room and words need not be spoken?). But, this, this is an assault on my ears and I’m not even related to the man.

I do not want to hear this man’s opinions or anecdotes. I’d move but the only other option would be to sit near the other old people swapping stories about their particular ailments or surgeries as “Judge Punch or Judy” roared in the background. Oye! It’s Sophie’s choice!

I’d been back about 24 hours after being gone for two weeks and I felt as if I’d never left. I had a feeling it was going to be a verrrrry long day and it was, we spent more than two hours waiting for the doctor to come spend about ten minutes with Miss Cathy.

They took an x-ray then the doctor said that her knee was healing better than expected so she could expect more than 100% mobility and range of motion out of her artificial knee and she doesn’t have to come back for two years for another check up.

It occurred to me as we were leaving the doctor’s office that in the past (say three or four months ago) Miss Cathy would have been very angry and agitated by the long wait, complaining or making a mini-scene. Not this time, she was calm and didn’t complain, she mentioned the wait but it was just a statement of fact, in fact she was even trying to sleep to pass the time till her name was called.

It was a marked difference in behavior and I don’t know if it was because of her time alone or what but she definitely seemed to have a different attitude. I really have to give her “props” for how she handled herself and I need to try to follow her example.

I may not want to listen to her but I can still learn from her.

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…….

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.