Tag Archives: tips for caring for a loved one with Alzheimers

Spring in her step

Posted in May by

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

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

“Good for you!” I thought.

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

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

Well, color me surprised!

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

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

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

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

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

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

Continue talking

Posted in April by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shades of grey

Posted in April by

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

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

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

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

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

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

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.

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”.

Paradise lost (and found)

Posted in February by

It’s been a little over a year since the diagnosis and about seven month since I moved in with Miss Cathy (but who’s counting right-well, obviously I am). So I guess it’s normal to be feeling a little malaise. It’s interesting that while I’m very clear that I know this is where I’m suppose to be I’m amazed that I’m still adjusting. It’s not like I thought this was going to be a cake walk, quite the contrary, I knew it was going to be hard-I just didn’t know “what” was going to be hard and “how” it was going to affect me.

I’ve been back almost a week now from a much needed vacation at the Paradise Pointe Island Resort in San Diego, CA. I have to say, I didn’t much miss being in the cold on the East coast or the chill that was in the air between Miss Cathy and me in the days leading up to our different destinations (she: down south-me: to the mid and west).

After spending a few days in Kansas City, Chad and I fly (between snowstorms) to the resort for five days of heaven. The trip was just what I needed it to be: long, quiet sunny days and starlit nights. I didn’t do much but walk on the beach, eat at one the island’s two restaurants (a lot), read, sleep and I did the requisite time in the jacuzzi.

I must admit I did very little (or no) thinking about life back here (at the laugh factory). It’s amazing how quickly I just shut it all off, I wonder if parents are able to do that if/when they can manage some time away from their children?

All’s quiet here at the apartment because Tony called to tell me that Miss Cathy decided to stay in North Carolina for an extra week. I swear to God when he told me that I felt like a death row inmate getting a reprieve from the Governor.

It’s also given me some time to sort out the confusion I was feeling before I left in search of paradise. In addition to worrying if I’m doing the right thing by Miss Cathy, selfishly what I think I’m having trouble dealing with is the thought that I’m looking at (and dealing with) my own future.

We all know that Alzheimer’s could be hereditary so I could be headed down the same road-except I don’t have any children to take the wheel and steer me in the right direction when I drive off into the dementia ditch. Oh my, listen to me, I can hear my grandmother saying, “Don’t worry about the mule going blind!” (Translation: the worst hasn’t happened so there’s no point worrying about it now).

As much trouble as Miss Cathy is having accepting her situation who’s to say I won’t be worse if (heaven forbid) I end up with Alzheimer’s. So, with that thought in mind, I’m trying to be more empathic and patient,“ There but for the grace of God go I”. A lot was left unresolved before the break but I’m back from my vacation, rested and ready for round two (this being the second time I’ve gone away for one of my quarterly “mental health breaks”).

Yesterday, I was out on long walk turning all this unresolved “stuff” over in my head when I got a call from a relative (who wishes to remain anonymous. “Anonymous” called to tell me that she’s been spending a lot of time with Miss Cathy and she thinks Tony and I are doing a wonderful job of caring for her (regardless of Miss Cathy’s apparent bitching to the contrary that we’re taking away her freedom and she’d be “fine” on her own). “Anonymous” also made a point of saying that we’re doing the right thing by NOT letting her stay by herself. She told me that from what she’s observed Miss Cathy is fine for the most part but she does have her “moments” (and you never can tell when that’ll be) when she gets confused or something just isn’t “quite right”.

“Anonymous” also said that she’s noticed that mom is very quick to temper and appears to be sitting on a lot of anger.

I gotta say, I was quite surprised by the call but since I don’t believe in coincidences I took it as a sign (and an unsolicited testimonial) that we (Tony, Suemi and I) are doing the right thing. I was almost convinced that maybe Miss Cathy had a point the last time we talked/argued (albeit a very loud one) that she could stay by herself sometime.

I was glad to get another perspective, it made me realize that it gets kinda cloudy here living in the “fish bowl”, sometimes you can’t see too clearly and the fish ahead of you looks like it’s making sense so you start to follow it-even if it looks like it’s trying to jump out of the bowl. So, armed with this new information and support I think I can hold onto the serenity I found at paradise Pointe. I just have to maintain some distance-and talk to some other fish.

Bromance

Posted in February by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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”.