Tag Archives: Reflections

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.”

Good night moon ( Good morning Miss Cathy)

Posted in May by

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

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

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

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

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

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

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

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

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

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

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

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

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

He said, she (thought) she said

Posted in May by

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

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

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

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

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

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

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

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

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

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

Posted in May by

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

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

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

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

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

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

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

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

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

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

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.

Voicemail

Posted in April by

“Hya son, I’m calling again. I just got off the telephone. I’m trying to look to see what time it is, I think this is….ahhhh, I can’t half way see the clock, looks like its twenty five minutes to eight. Well, anyway, I had called you earlier.

I’ve been on the telephone talking to Marcia so I don’t know if you had tried to call while I was on the phone talking to her. I didn’t get a signal, so anyway I was just letting you know. She said she’d be up tomorrow so anyway; I’m going back into the bedroom now to watch the “cooks” on TV.

I’m doing very well and I’ll talk with you later, love mom.”

That was a voicemail that Miss Cathy left for me not too long ago. We’ve bee playing “phone tag” for the a few days now (which is funny seeing how she never leaves the apartment). But, she discovered “screening” years ago when I first bought her an answering machine and now she just lets the call go to voicemail-listens to the message and then decides if she wants to call the person back.

She sounds good, she always leaves “mini” voice “letters” instead of messages, and I’ve always thought that was sweet.

By all accounts she’s doing well and has been enjoying her time alone. The upstairs neighbor, Ron came by one day last week and took her to the grocery store so I know that she’s gotten out at least once since I’ve been gone.

And I’m glad to hear that Marcia, another neighbor (downstairs) is coming up to visit.

I asked her to water the plants for me and she says she’s remembered the schedule of twice a week and the amount of water for each plant.

She says that she’s been keeping the cooking to a minimum (a promise she made to me before I left) and has been using the microwave to heat up a lot of the food that she cooked before I left-a lot of stews and casseroles.

I’m back on Thursday and have decided to get a part-time job out of the house since she’s doing so well (and lets be honest-I could use the money with art not selling like it used too). Depending on what I can find (I have few skills other than drawing for the past thirty five years so don’t be surprised if I’m you new barista at Starbucks).

So, whatever I get will be for about four to five hours a day for as many days a week. I think that being out of the house for a few hours each day will be good for both of us.

I think I’ll call her and let her know my plans…….oh, what do you know, it went to voicemail.

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.

Shades of grey

Posted in April by

I’m off to the estate-planning seminar on Wednesday to get a jump on long term financial decisions that will have to be made but I’m coming up on a grey area in this whole care giving business. I try to stay out of Miss Cathy’s personal affairs as much as possible but we live in close quarters and lets face it-once you’ve had to bathe someone and help them in the bathroom the boundaries get a little blurred.

I’m sitting in the car right now writing as I wait for her while she’s in the bank “taking care of some business”. What the “business” is I didn’t ask (thinking it’s none of mine) and she didn’t offer. The caregiver in me who is aware of her finances is wondering what she’s up too and if it’s responsible of me to not be in there with her while she does whatever it is she’s doing (a light shade of grey).

Tony has taken over paying her bills and I handle her day-to-day financial needs. Now that she’s feeling empowered by the Neurologists visit it seems (to me) that she’s flexing her independent “muscles” a bit (if only that included some exercise like going outside and walking like the doctor suggested, too). Anyway, it’s her money but now that Tony and I are involved it’s our business, too.

I don’t know what she’s doing in there right now but I do know that she’s a senior citizen on a fixed income who’s been “pretty” responsible about her finances but she has made some (how shall I put this?) questionable choices money-wise that may or may not have anything to do with her condition-again (we’re in that grey area).

All I know is that I’ve “chosen” to respect her privacy and hopefully she’ll tell me what’s she’s up too. I’ll know soon enough because I have access to her accounts, but that’s not the point really. I just hope I’m not going to have to find a financial mess that Tony and I will have to clean up.

I guess the best I can do is to look for patterns, see what her financial reasoning is on paper, judge how responsible her choices are moving forward and deal with it then and that’s pretty black and white.

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…….