Tag Archives: alzheimers

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…….

Family matters

Posted in March by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Welcome back, your dreams are your ticket out

Posted in February by

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

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

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

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

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

Now back to the weekly blog……

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

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

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

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

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

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

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

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

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

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

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

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

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

Bromance

Posted in February by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Up in smoke

Posted in January by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I’m ready to go under

Posted in January by

Night after night Miss Cathy says, “I think I’m ready to go under”. No, she’s not channeling Dr Kevorkian; she’s just letting me know that she’s ready for me to turn off her TV and bedside lamp so that she can go to sleep. She’s not ready for the “Big sleep”- just a deep one. But, when I hear it I know that it’s a sign for me that the day is done and I’m pretty much free to be.

Recently I’d been spending my days stressing about telling her about my upcoming trip. It’s that time again, my “quarterly time-off”!(sounds like I’m working for an insurance company). My plans have been set for weeks now but I was waiting till about two weeks before (the trip) to tell her because I’ve been dreading a repeat of what happened last October when I told her I was leaving for a week (my first “time off” after being here for three months). She had no problem with me taking a trip (in fact she was happy for me) the problem started when she realized that my leaving didn’t mean that she’d get to stay alone in her apartment, it meant she’d have to go over to my brothers’ while I was gone (in her mind a fate tad amount to internment). Which also meant almost daily conversations, arguments and campaigns on her part to stay home alone. Oy Vey! It was exhausting and by the time I dropped her ass off at my brother’s “you best believe” I was in need of a holiday.

I’d remembered something that a psychiatrist told me years ago about sharing difficult news, she suggested letting the news come out of a normal activity and not to call any more attention to the news than was necessary by doing something out of the ordinary like 1) sharing it on a major holiday b) calling everyone to a specific room to share the news or 3) taking the person someplace unfamiliar to talk to them, lest you set up a future trauma that would include not just the news BUT the person, place or thing surrounding what you have to say.

So, with that in mind I set about waiting for an opportunity to tell her about the trip. The moment presented itself the other day while we were playing 3-13, the card game. She had asked if I wanted to play and at first I thought “Uggh, I am not in the mood”, then I realized that it would be the “normal activity” I was waiting for so I said “I’m in!”

It was after I’d won the game and we were still sitting at the dining room table, straightening up when I simply said,” I’ve got some news. I’ve got a trip planned and I’ll be gone Feb one through the ninth.” I know it sounds kinda dry, but I didn’t want to make a “bigger” deal out of the trip (nor did I want it to spark a major blow up either) so I opted for a “Readers Digest” version of events. After delivering my news I braced for whatever she was going to say but other than asking me to repeat the dates a couple times she didn’t say much else. I suggested that if she didn’t want to stay with Tony that maybe she could ask her girlfriend, Adele, about staying with her. That kind of just lay there so I burbled on about “too bad the weather wasn’t nicer or you could take some time and go home to North Carolina for a visit.” After chatting a few more moments we were up from the table and onto our separate activities for the rest of the day.

I gotta say, I was a little surprised by her response; maybe I’d built it up too much in my head (and believe me the quiet way she received the news was far preferable to what I’d imagined). Not sure what was coming (if anything) I kinda walked around the rest of the day “waiting” and “it” never came.

Well, it’s been three days since I gave her the news and not a peep out of her about it. Maybe I misjudged what her reaction was going to be (Nah!), maybe she didn’t hear me or maybe she’s just resigned to the way things are-the “new normal”. What I really think is that she’s just waiting for her moment (same as me) and she’ll “pop” out with something that I didn’t expect so I’ll deal with it then.

No matter, she’s given me plenty to think about at night right before “I go under”.

Sweets n’ treats

Posted in January by

Miss Cathy’s project d’jour was cleaning all the pieces in the china cabinet. I was happy to see that she was doing something other than sitting in the living room watching television (not that there’s anything wrong with that-I too continue to clock way too many hours staring into “the box”). She said she thinks it’s been at least two or maybe three years since she’s taken out all the dishes, crystal stemware and choctchkes and washed each by hand. It’s a big commitment of time and energy, delicately removing each piece and not breaking it or any of the other items that are stuffed onto the shelves.

The dining room in the apartment is rarely used, except by me to work (sometimes). I don’t remember the last time anyone actually had a meal in there. It’s not a large space and unfortunately it’s made even more uninviting by the huge “Mediterranean” style dining room “suite” that Miss Cathy brought here from one of her previous marriages. The furniture is too large for the room (I think it was designed with a Medieval Spanish Castle in mind), several of the chairs are in need of repair (meaning broken) and I was beside myself with joy when Miss Cathy suggested that I get rid of two of them not too long ago.

I took to the task of breaking down the chairs with gusto, in my mind they were just two more things standing in the way of this becoming a “livable” space instead of the stuffed animal “way-station” filled with chairs that were either uncomfortable, broken or occupied by her collection. Since the chairs were so old and wobbly (not unlike our matriarch come to think of it), it was very easy to pull them apart (I know what you’re thinking……..but, no, I NEVER think of “pulling Miss Cathy apart”). After my remark about “understanding” elder abuse I feel a need to include disclaimers ever so often lest social services may be reading “in” or someone feels the need to mistake my sense of humor for a confession of condoning or participating in aberrant behavior. All rightly then, now that that’s out of the way………..

In no time at all I had the pieces tied into two bundles ready for the trash. Unfortunately they couldn’t be recycled or used as kindling because they were made of some kind of wood composite or man-made, factory turned material. I think if you put a match to them you would asphyxiate from the smoke rising off the plastic.

So, happy that she was occupied with an activity I was off to “the city” to have lunch in downtown DC with three friends from Philadelphia who were down for the day to visit the National Portrait Gallery (and to see me, of course). We had a great time at lunch and seeing friends had the usual effect of working like a ‘tonic’ on me-I drove home energized and refreshed.

Before we walked to the restaurant from the museum where I met them I had the chance to talk to one of my friends alone about Miss Cathy. Cassandra has been taking care of her mother for years now so I was happy to have some time to compare notes and ask her advice. Our mothers do not suffer from all the same illnesses but they do have diabetes in common. No matter the particulars, if only for the benefit of being able to sit across from and vent to someone who ‘gets it”. Besides, I think there’s always something to be gained from talking to a “fellow” traveler who walks down the path of care giving.

I listened to some of her “war” stories then I shared some of mine. Then we got on the topic of “picking our battles”, we were talking about the fact that both our mothers are diabetic but love sweets, we sounded like two parents with little children feeling guilty because we’re the ones doing the shopping and have control over buying the foods they consume but find it difficult/exasperating/hard to say “no” to their requests sometimes.

Cassandra told me that what she does (on top of rationing her mom’s sugar intake-and picking her battles) is to give her mother a baked sweet potato loaded with Cinnamon, it not only satisfies her cravings for dessert it’s healthy food that can be easily digested and it helps psychologically because one doesn’t feel deprived.

I thought that was a brilliant idea and now I can’t wait to try it out on Miss Cathy, who knows, maybe I’ll serve it to here in the dining room on one of her china plates now that they’re sparkling clean.

This n’ that

Posted in January by

Not much to report as the New Year gets underway (and considering all that 2010 had to offer that’s a good thing).

Miss Cathy’s doing pretty well, its Sunday so she has her religious programs that she watches on TV in the morning and football to keep her company in the afternoon.

I’m a little concerned that she hasn’t been out of the apartment (other than to go to the doctor’s office) in a couple of weeks but her spirits are high and she says she’s enjoying being inside “out of the cold”.

Last week we went to the Doctor’s for a check up and the reports were all good, so physically she’s going great. Now I have to schedule a check up for her metal health and I’m taking her to the Dentist next week for her annual visit.

She hasn’t seen the neurologist, Dr Alemayehu for about six months now so it’s time for a check up, I’m sure there wont’ be any discernable change but we need to keep on our schedule of appointments as a matter of routine.

I have been out and about a little more than usual, thanks to the holidays and my birthday. I’m feeling more and comfortable being away from home for hours at a time, and although I haven’t availed myself of the help that’s been offered, I know that there are a few friends and relatives that I can call on to sit with Miss Cathy if need be.

Christmas day

Posted in December by

We spent Christmas day here, just the two of us. I didn’t ask her if she wanted to go to Tony’s- I mean, what’s the point after she was so adamant about NOT wanting to be there for Thanksgiving. I’d thought to call and ask them to come here for the day but first I procrastinated, probably because knowing my brother he wouldn’t have wanted to and I was feeling guilty about putting him in the position to have to say “No”. But, in the end it didn’t matter because when I called Suemi was just getting over a cold, Tony was sick and although Nile was there, Zachary had just left for a trip to Japan to visit relatives.

Late Christmas morning Miss Cathy told me that one of her girlfriends had invited her to dinner and that I was invited, too. I didn’t want to go (and said as much) but I would gladly drive her whenever she was ready.

I was actually excited for her, thinking that she’d get dressed up and have fun hanging out with her friends but she put a kibosh on that right quick. She said that she didn’t want to go either and when I asked if it was because I wasn’t going she said “No”, that she didn’t want to go “regardless” (and her friend had even offered to come pick her up!).

I gotta say, I was pretty miffed. I told her that I don’t understand how she can just sit in this apartment all the time and not go out (sometimes for more than a week) and not do anything or see her friends. “Well,” she said, very satisfied with herself, “I talk to my friends on the phone all the time.”

My first thought upon hearing that was, “Well fuck! If all you want is talk on the phone and never go anywhere I can go back to my life and put your happy ass in an old folks home.” I’m starting to understand how people can beat the elderly-not that I condone or would ever do anything like that. Again, I would NEVER touch Miss Cathy (or anybody for that reason) it’s just that it gets sooo frustrating sometimes that you can think all sorts of crazy things.

.

I’m also starting to understand how old people become shut ins-and the sad part is that she’s NOT that old.

I just don’t get it and I’m trying too. First there was the panic about going to Tony’s, okay, that’s an easy one because of my brother’s house being associated with sickness and being away from home for a long period of time-I get that (kind of). But now there’s this  “it’s too cold to go outside” excuse-which pretty much means she’s justified (in her mind) of NOT leaving these four walls until sometime in March.

Speaking of the weather-actually I’m still talking about Miss Cathy (what else is new) but today as I was washing her hair she told me she was thinking about making an appointment at a beauty parlor but her concern was not about the weather but the fact that there are “20 stairs” she’d have to climb to get inside the building.

“So.” I said,” you’ll just walk a little slower. It’s not like you have to walk the stairs everyday. Besides, you could use the exercise.”

“Nah,” was her response. I told her that I don’t understand why she even bothered to have the knee replacement surgery if all she’d going to do is be afraid to walk anywhere.

“I’d like to give YOU a knee replacement surgery and see how you’d like it.” She said.

“I’d do a helluva lot better than you, I know that.” I replied. “You talk like you’re the only person this has ever happened to, there are people older than you having this surgery and they’re jumping out of planes, running in marathons, dancing and rock climbing!”

“No they aren’t either.” She said, her voice muffled by the towel she had wrapped round her head as she dried her hair and toddled away, “I’ll bet they wish they were doing as well as I am. I think I’ve come a long way.”

Yeah well, I know you do and that’s the problem.

I don’t know, it’s been nine months since her surgery and you’d think (I thought) by now she’d be much further along than she is; better balance, more speed and less afraid of a fall- maybe that’s just my “wish” for her. The truth is, before I moved in with her five months ago I had no idea what her day-to-day life was. I didn’t know how large or small her world was.

Of course I had impressions of what I “thought” her life was like but that was based on twice weekly phone calls from twelve hundred miles away. Now that I’m here, part of me is like a parent with a child, trying not to impose my vision of who/what they should be, rather I’m trying to hang back and let her “be”.

A few observations from the peanut gallery

Posted in December by

Miss Cathy and I have played the card game 3-13 several times now and while she seems to be getting the hang of the game there are a few challenges. She’s caught on to the basic premise of the game but she’s having difficulty with the subtleties of how to win a round. As minor as these things appear I do think they are significant in that they show a break down (however slight) in her problem solving and cognitive skills. One of the reason I’m so happy she likes playing cards (aside from the camaraderie) is that the game gives her an opportunity to exercise her mind “muscle.”

After playing a few hands she confessed that she didn’t know how to shuffle the cards very well so I thought I would teach her, easy enough-or so I thought. When she didn’t “get” my verbal instructions I tried showing her what I wanted her to do and it didn’t help much, if anything I think it confused matters. This was most apparent when I asked her to “mirror” my hand movements as I demonstrated how to mix the cards together.

I watched with fascination (not frustration as you’d probably think from my usual ranting) as I would arch my hand “up” by the wrist and hold the cards with my fingers in a specific way, left hand and right. She would struggle to hold her hand “down” and to approximate holding on the cards with her fingers, never able to match either what I was doing or each of her hands.

It’s in these moments that I’m at my best; patient and kind, with an instinct as to the right thing to say and do. I went through the motions of showing her what to do several times, each time phrasing the instructions differently or altering the visuals, looking to see what would “click” with her, ultimately abandoning the lesson for another time after praising her efforts.

Because of something we’d gone through recently I told Chad that I could be counted on to “shine” in a crisis-that it was the day to day of life that I struggled with ”dully”. It’s not that I’m bragging-far from it, it’s just an observation made after bearing witness to how I’ve responded to situations in my life. I know who I am, what I’m capable of and that I can be counted on. I’m not saying I’m unique by any stretch, it’s just that I think there are three types of people: those that “show up”, those that “can’t cope” and those “that flee.”

Most of us know which we are, and if you don’t –others do.