Folding chairs


Last Friday morning I walked into the kitchen for my usual coffee before my brother and I were headed out for an appointment with a lawyer to go over Miss Cathy’s estate. Tony had come over the night before after work to surprise mom with the visit. I knew she was very happy to have “her boys” all to herself and would be in the kitchen whipping up a fattening, artery clogging breakfast as only a mother could.

So, I wasn’t surprised when I saw Miss Cathy standing over the sink but something wasn’t quite right. It only took me a second to know by her less than usual “peppy” response to my salutation and the way she was slumped over that something was wrong. I went over to her, looked at her face and saw that she looked confused and disoriented.

Perspiring heavily, it looked like she was gripping the counter for dear life so I told her I was going to put the folding chair behind her so that she could sit down. I didn’t know what was going on with her but I knew that it was imperative to sit her down before she fell down. She wasn’t very communicative and her movements were very slow, as if she were trying to show me that she understood what I was saying but her body just wasn’t responding the way she wanted.

She didn’t seem able to move much at all; she just seemed to hang on. Seeing that she wasn’t making much progress on her own I held under her armpits and helped guide her down to the chair as gently as possible, talking to her the entire time, telling her what I was doing and how far she had to go before she was seated, reminding her not to “plop” down in the chair which is her habit.

Once she was seated I was able to look at her more closely and ask her a few questions to determine whether she might have been having a heart attack or stroke. It didn’t appear that she was so I got her a glass of water and wiped her brow and neck. Once I got her to sit down she couldn’t seem to calm down, she squirmed with what little strength she had until finally I was able to quiet her. She then told me that she thought she as going to throw up.

I reached for the nearest thing I could (which was an empty planter) and gave that to her while I went to her bedroom where she told me she had a supply of bags for vomiting. When I got back she had not thrown up yet but she’d dropped the planter, unable to control her fingers. She retched more than she threw up but there was some fluid and it seemed to help her to expel it.

I was able to keep her calm enough to sit for a few more minutes before walking her to her bedroom so that she could lie down. In her bedroom I got her to sit quietly as I debated with myself whether or not to call her doctor but in the space of those moments I took deciding she seemed to get better, I could actually see that the confusion was leaving her face and her movements became more fluid.

We took her blood count and it elevated (222 and her blood sugar is usually in the 140 –to 150 range). By the time we made the first “stick” she was talking in her normal voice and insisting that she wanted to go back in the kitchen to make breakfast. We got her cleaned up and I made the decision not to call the doctor but to tell him abut this episode when we see him next (which will be soon). I watched her as she walked (she insisted that she could walk un-aided) back in the kitchen and I sat with her as she prepared breakfast for my brother and me.

I reminded her that if she had been alone this was one of those occasions when she should have pressed her “medical alert” button and she agreed. But watching her “in the moment” it concerns me now that I don’t know that she would have had the presence of mind to do that. I know for a fact that if I hadn’t come into the kitchen she wouldn’t have had the wherewithal to pull over the chair that was less that a foot away for her to sit herself down.

She may have been able to hold onto the counter until whatever it was, low blood sugar, excitement about my brother being here or just a wave of nausea passed, and then do whatever was necessary to keep herself safe but I don’t think that would have been the case. She very well could have fallen and we would (potentially) have a repeat of the episode that started this entire journey in January of last year when she fell on the bathroom floor and wasn’t discovered for three days.

I know that the slightest interruption (good or bad) in her routine can cause a change in how she acts or responds, from something as very subtle as her demeanor changing to something like what happened on Friday. I don’t know if that was the case or not, that’s something I’ll talk to the doctor about.

After all the bickering, boredom and cost to my personal life its moments like last Friday that remind me why I’m here and I’m grateful that I can be. Like my friend William says, who takes care of (not only) his mother but his father as well, “It’s an honor to be able to spend the time with them and to do whatever I can to make there lives more comfortable after all they’ve done for me.”

Shades of grey


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.

Family matters


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”.

Bromance


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.