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.