Tag Archives: dementia

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.

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.

A lifeline

Posted in March by

Since the meeting with the neurologist things around here have been going pretty smoothly. Miss Cathy is still doing her “victory lap”; calling everybody she knows to tell him or her what the doctor said (or more accurately-what she “wanted” to hear him say).

Anyway, she called me into the living room recently to tell me that she had an idea about how to make “me” feel more comfortable about her staying home alone (what she doesn’t seem to realize is that I am “so fine” with recent events, I went through whatever upset and changes I was going through and now I’m moving on-next!).

She suggested that “she” should get a “medical alert necklace” (you know the one, you’ve seen the commercials on TV late at night, “Help! I’ve fallen and I cant get up!”) Well, I was surprised that she came up with the idea but after thinking about it I gotta say that I was impressed (even if “I” am the one that is going to have to look into getting it).

So, I added researching the “necklace” to the list of things to do. Tops on that list were contacting lawyers to get information about her estate planning. It’s not like there’s much of an “estate” but what little there is has to be carefully managed so that Tony and I can do the right thing by her and (hopefully) set up the future so that when she needs long term care everything is in place for her to take full advantage of Medicaid.

I got a list of lawyers from The Alzheimer’s Association and they also suggested I check out the NAELA (National Assoc of Elder Law Attorneys) website. Unfortunately, the list from the Alz Assoc needed to be updated. A lot of the lawyers that I called no longer practiced or the numbers were wrong and the NAELA website had some incorrect information, too. But, I persevered and came up with about half a dozen lawyers in the area to contact. And being the good little “do-bee” that I am I called my local contact at the Alz Assoc to tell him about updating the list (hey, it’s the least I can do with all the help they have given me).

It took about a week for the various lawyers to get back to me (for some reason four of the six all called on a Friday). They all seemed “capable” (over the phone) and took a fair amount of time to talk with me about what I wanted to accomplish. I knew that I needed something to try to distinguish one lawyer from another since I didn’t have personal experience or a recommendation from someone who had worked with any of them. The Alz Assoc takes great pains to say up front that they are not endorsing or recommending anybody, they are simply providing information.

I had my list of questions to ask and I found a way of “testing” how knowledgeable they were so that I could separate the competent from the cash seeking by asking all of them about the “look back” that Medicaid does for all applicants (something any lawyer worth his salt should know about if they handle any elder law cases).
The “look back” is the time frame by which Medicaid considers personal wealth in determining who gets “how much” money from the government agency that will be paid out for a persons’ long term care (the correct answer: under the current guidelines the “looks back” covers looking into the last five years worth of a person’s assets and holdings (and not three years that some lawyers are still quoting, by the way.

If Medicaid is satisfied that a person did not dispose of property or assets in order to qualify for benefits they will appropriate the necessary funds for care, if they feel someone has assets of any significant value (a relative term) they can determine that the person should shoulder most or part of the financial responsibility for care until their resources are exhausted or Medicaid can put a lien on the property to recoup monies paid out for care after the person dies and the property is sold).

They all agreed that it was wise to start the process sooner rather than later and told me that we are lucky to have Miss Cathy’s support and co-operation. A couple of the lawyers told me horror stories of how family members were trying to do the right thing by their loved one with Alzheimer’s but the person was unwilling to cooperate or too far gone in the disease to be able to help. Some (because of the disease) had become paranoid, combative and stubborn to the point of sabotaging plans by refusing to sign documents or not agreeing to what was in their best interest. So, more often than not they leave a mess for the loved ones to deal with (and sometimes a huge bill for care-remember, long term care can run up to thousands of dollars a day).

I did find two lawyers that I’m felt comfortable enough talking to over the phone to want to follow up with. One lawyer in particular impressed me because she was the only one to suggest that there may be other ways of planning for her long-term care other than (or in addition to) Medicaid. She told me that Miss Cathy could be eligible for a Veteran’s Administrating Pension Benefit that is given to widows of war veterans, the caveat is that the deceased only has to have been enlisted during a time of war-the soldier did not have to have seen combat. If she qualifies, it could mean a possible thousand dollars a month more toward her care so that’s definitely something worth investigating.

This same lawyer invited me to a monthly estate-planning workshop that she holds in her office, the next one is on April 5th and I plan to be there. It will give me a chance to not only gather some information but to check out the lawyer as well.

As for the medical alert necklace, I found two companies online that l felt comfortable calling based doff their websites. The first was “Lifeline”, the one that advertises on TV and the other was a competitor that seemed to offer the same product a t a lower price but I just didn’t get a good vibe from them so I was leaning toward the more expensive company that originated the product.

The good news is that their local rep called to give me a much better deal than was quoted to me originally (so be sure to have the Lifeline agent give you the contact telephone number for a rep in your area-there could be deals and specials that you can take advantage of to lower the cost of the service).
I signed Miss Cathy up, the equipment (which just plugs into a telephone landline power source to monitor activity in addition to the necklace) came on Saturday. I’m waiting for the fist of April to do the installation. I’m planning a trip to New York and Kansas City for two weeks starting on Aril 7th so Miss Cathy gets her freedom (she was sooo happy when I told her my plans).

She said that she changed her mind about the medical alert necklace after she found out how much it cost. Well, I said using her own words against her when she told me that, “Too bad, it was your idea and now I happen to think it’s a good one so we’re keeping it and you’re going to wear it.”

Whether or not she does remains to be seen-all I can do is all I can do and today I’m okay with that.

Rx for change Part II

Posted in March by

As Miss Cathy “sat” hugging the neurologist, Dr Alemayehu, for what she perceived was her “victory” over hearing that she was healthy enough to stay by herself, I sat in the corner torn between congratulating her for “winning” (when I didn’t realize there was a competition but I was sure as sh*t starting to feel as if there were-and I’d better catch up fast, “Nobody sticks Baby in a corner!”) and resenting her for seeing me as some sort of adversary that she had to best. I wanted to slap the smug, satisfied expression off her face (do I really need to put the “it’s just a joke/ I’m anti-violence disclaimer in here again?”), hand the doctor my keys, wish them both “God’s speed”, get the hell out of there and boogie back to my life.

But, if I did that, then what was the last year all about?

Digesting this new information made me wonder, “Had I over-reacted (and over-reached) by my decisions and actions this past year?” Had I got it so completely wrong?” And, if I got “this” so wrong, what else in my life was suspect? Suddenly “her” doctor’s appointment became “my” existential crisis.

My ego (and personal issues) aside I knew in my heart of hearts that this situation was ultimately about Miss Cathy and not me. I broke up the “love-fest” to tell the doctor that my only reason for being here was for my mothers’ well-being and whether I agreed with what I heard or not I was going to go along with what he advised.

I made clear my objections, cleared up some of Miss Cathy’s “tortured tale of confinement” and told the doctor the reality of what I was dealing with from my perspective and asked him what I should do. I tried to say this as calmly as possible but the ‘spat’ Miss Cathy and I had earlier had put me in a less than most diplomatic mood so it was hard to find words that weren’t “damning”. I was getting a little overwhelmed with emotion because (frankly) I felt betrayed by her.

The doctor’s focus was Miss Cathy (as it should be, she is his patient after all and I am not) so when he did acknowledge me it was to say that we’d never met and I (surprised and a little offended) had to remind him that I was the one that asked for him to see Miss Cathy in the first place a year ago and “I” was the one that met with him to go over her diagnosis (Hey, it’s a quibble, I know, he probably thought I was my three inches shorter, fifty pounds heavier brother but hey, the man meets so many people).

I could really care less if he remembered me or not-I just wanted him to listen to what I had to say and to (seriously) factor that in as he assessed her care (and not blow me off like some “Johnny-come-lately” well intended but mis-guided family member with no time “in the field”). While he seemed very matter of fact about the list of things I presented (that I thought) justified her not ever being alone, he explained that his focus (for right now) was that her biggest challenge was that she has short term memory loss and since she’s regained (after her fall last year and knee replacement surgery) most of what she needs to function independently day to day he felt comfortable with his decision.

He said that I could go out of town, leave her alone at home and I (or Tony) could check up on her by phone. He advised that we shouldn’t involve friends or other family members just yet. He said that to so might overwhelm her (it goes against my better judgment but hey….Okie-dokey doctor).

It was interesting (on some level) to watch the doctor take it all in as he listened to both of us; one, the parent (his patient) spouting what she knows to be “right for her” and wanting his approval and the other, me, the adult-child, “advocating” for what I feel is right-and in this case, advocating for Miss Cathy (against Miss Cathy) and wanting him to see that I had her best intention in mind and was not pursuing some personal agenda for my own benefit. I wondered how many times a day he goes through this.

He said after listening to her and observing her body language that “shuffling her around” from place to place causes her so much anxiety that it’s better to let her stay at home alone. He reminded me that Alzheimer patients thrive in their own environment and respond well to structure and routine and can deteriorate faster if stressed, anxious and in “unfamiliar” surroundings. So, clearly it was in her best interest to keep her at home where she is happiest.

Satisfied that she had the doctor in her corner Miss Cathy asked if she could drive. She’s been itching to get back behind the wheel of a car ever since I moved back here (and I’m sure our ‘spat’ about her backseat driving was fresh in her memory, too). As I write this I wonder if it’s not the driving that she wants so much as it’s the control of the situation -any situation, since she probably feels she’s losing control in so many other aspects of her life.

It got a little confusing at this point because the doctor said that he saw no problem with her driving “locally” (to the market or to a friend’s house nearby) but then (after I interceded and told him of her real intent-which was to do as she damn well pleased) he said that it was NOT a good idea-especially when she told him she wanted to go out and buy a new car.

Not hearing what she wanted she started to get a little “pissy” and she said she still had a valid driver’s license that was good till 2014 (as if that was some sort of chess piece she could play). His advice to her was to not waste money on buying a car (new or used) because it won’t be too long before she’s not able to drive at all. The doctor told her that “he” had the right to report her to motor vehicles and her license would be revoked if/when he determined that she was no longer fit to drive-checkmate.

We’d been with the doctor for quite awhile and I never really found a better segue so I had to ask, “What do I do if she hits me again?”

Miss Cathy gave me a look like she couldn’t believe I’d “ratted” her out like that. Man, was she pissed off (and embarrassed). Little things like hitting your child are not to be discussed “outside” the family. She tried to laugh it off, talking to the doctor “entre nous” as if the whole thing was insignificant but he wasn’t having any of it, “You have a bit of a temper don’t you Mom?” he said. Then the doctor turned and reminded me that increases in anger and paranoia are common in her condition and to try not to take it personally (easier said than done but I nodded anyway).

He lectured her on controlling herself and her temper. He told her that it wasn’t wise to alienate the people that are trying to help her-especially her son. He told her to start appreciating all that I’d been doing for her, too. He said that as a foreigner himself he was surprised when he came to practice in America how many of his patients are abandoned by their families and left to deal with their illness on their own. He told her how lucky she was to have my brother and me, how fortunate that we would WANT to take care of her the way that we have.

“I see many patients everyday, some in later stages of the disease, in very bad shape and they have no family or no one to take care of them”, he said very solemnly, “You are very lucky.” It felt satisfying to be acknowledged but it was a little sad (to me) that she had to be reminded of that fact (not that she isn’t grateful,she is-she’s just not cooperative).

He stood up to leave the room for a minute but before he did he gave her a piece of paper, a pen and asked her to draw the face of a clock and to put the hands at 10:30. When he came back he took the paper from her and he seemed satisfied with what he saw. He showed me her efforts and explained to me that while the drawing was crude and shaky it clearly indicted to him that she had not progressed any and was maintaining at “stage one” very well.

I don’t know, it was all just a little much to “take in” at one sitting. It’s not like I was vested in her being ill but I had been operating under the assumption (and medical advice) that was very different from what I was hearing now. So, as I sat there I started to feel strange-like I “needed” her to be sick(er) so that I had purpose-how f*cked up is that? I mean, wasn’t all of this suppose to be about her (and for her) anyway? Wasn’t the main reason I was here to help her to be as healthy and happy as she could possibly be given the circumstances (as I understood them originally anyway)? So, shouldn’t I have been over-joyed at the news that my mother could “more or less” take care of herself and that the doctor was using words like “high functioning”, “capable” and “independent”?

I mean, any rational person reading this or someone that has a loved one with dementia and heard those words would be ecstatic so why wasn’t I? I found it all very confusing. So, to be told there was less “care” to “give” I had to ask myself, “Where does this leave me?” All I heard was that I was “not needed” (as much) and I suddenly become very protective of my new identity as “caregiver”.

Of course part of me is ecstatic that I can go away for longer periods of time and not feel guilty, it’s just going to take a moment to re-group and get with the (new) program. I knew coming into this that things were going to shift and change (and not on my schedule) and this was one of those times. Moving forward I’ll get a chance to regain some of my life back as I continue to figure out what the “new normal” is for me.

So, finally, I can’t hope but think that for however long it lasts this new prescription for change is a good thing for Miss Cathy and for me, too.

Rx for change Part I

Posted in March by

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

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

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

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

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

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

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

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

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

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

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

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

More later…….

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!”