Reckoning Part 2

I have a habit of thinking that death solves things. Mostly my own, because that would take are of it all. If asked, “what did Philip’s death solve?” my answer would be that is not what I’m talking about here. But the question intrigued me enough to forego listening to my usual podcast this morning during my walking and instead think about this. Soon as I the cross T’s and dot I’d on this mostly-finished post, that’s what I’ll write about next.

 Philip is my son, he is not, was not ever, something to be solved. He was something to live for because love is what there is to live for. I am not someone who particularly feels loved whether or not I am, and maybe that is why life has always felt too hard. But before I go down that road, I want to get back to my mom. Writing is the way I look at the thing instead of wishing it dead to avoid it.

It came as a surprise to both my brother and me to realize my mom’s financial situation. We had to consider if assisted living was something that might be necessary for her. There is no clear answer and since it’s unaffordable maybe there doesn’t have to be. Other than the fact that Alzheimer’s progresses, there is too much uncertainty about it. My mom’s short term memory is shot. But she isn’t doing things like leaving the oven on or getting up in the middle of the night and wandering around. She’s angry that we’ve taken her car away and is constantly berating me and my brother to others for doing this to her. It doesn’t matter how many times we tell her this is what her doctors want, how many times we ask what, exactly, is the advantage of this to me or my brother? She’s resentful – and who could blame her – that her independence is being eroded, that she’s paying someone to go to her house and keep her company three times a week. That’s what’s so hard about where she’s at right now – she’s enough in the disease to warrant attention, but not enough to make her forget what she’s losing. 

Assisted living sounds like a good idea – she’d be in her own apartment but have people around to help her as well as people to keep her company. My mom is alone most days. Before her diagnosis, I don’t know what she did, but she kept herself busy. I would go weeks without talking to her. I have a strained, difficult relationship with her, always have. The last time I tried to address it with her – to what end, I do not know – was a couple years ago, before Alzheimer’s. She looked at me and said, “What do you want from me? I am who I am, and I’m not going to change.”

That was the exact right question to ask me, and I still have not looked to find the answer.  

These last six months or so I’ve had to be in contact with her in a way I never have, especially since I moved out of her home forty years ago. I remind myself I do it for R, my brother, and M, my sister-in-law because it is not fair to leave this all the them. In terms of actually seeing her, they are more involved. They live closer to her and R works in Brooklyn and so can stop by at times after work. Plus neither of them are awash in resentment toward her. It’s the classic story of siblings being raised in the same house but each one having a different story to tell. It doesn’t help that I am four years older than my brother or that I went to public school, he went to Catholic. Our lives even then were separate. At the time, Catholic School was considered “better.” But I didn’t want to go school with nuns and uniforms so my parents let me go to public school. R didn’t have a choice and I have to wonder, looking back, what that says about my family. Certainly it strengthened my conviction I was an outsider, but in a way that made me feel I had some power. I got to go where I wanted, R could deal with the nuns and their disciplinary rulers (at the time word was if you didn’t behave the nuns would whack you on your backside with their rulers. True? Who knows?)

Being in contact with my mom is not pretty. It might, in part, be one of the many reasons I am finally able to write. Because what I am seeing is bringing up feelings so overpowering I don’t even know who to talk to about them, at least not in any kind of depth. Timed three-minute AA or AlAnon shares doesn’t do it, the culture I see at my small office is concerning, and I am trying too hard to to understand this to be distracted by anyone who might make some off-the-cuff suggestion that might too easily cause me to think that I am making a big deal out of nothing or that I need more compassion because my mom is elderly. It has been too long since I’ve been able to sit and face what is happening and while talking has its place, writing is how I discover.

My mom is a social creature. Before I hear, “we all are,” let’s agree there are degrees. I am introverted, my mother is not. When I was growing up, she used to work for my Uncle M at his lumberyard. Even after he closed it years ago there were still things she did for him, right up until a few months ago when we took her car away. I never thought much about what she did to keep herself busy, even after my dad died. We led separate lives in separate states and interactions with her were awkward if not painful. I never cut her out of my life, but I did keep it to a minimum. Having to be in contact more lately has given me a look into her life and it’s painful. I see now my mom kept herself busy shopping and meeting friends, getting her hair and nails done weekly. Other than watching TV, she has no interests, She doesn’t read nor does she have any hobbies. She takes great pride in her appearance and in discussing her mental deterioration with others who need to know what to look for, I have heard, ‘What are you talking about? She looks terrific!.”

Maybe this helps to answer the question my mother posed: What do you want from me? I want you to show me. How am I supposed to live? How do I love? What matters, what truly matters? How, at 64, how do I live a life that will make me understand it was worth it, that I figured out what matters? Because I am not going to find it in my hair or nails or the skin I resent for wrinkling. And I am not going to find it from my mom who has always been disappointed in me – my hair, my hands, my face, my feet, my choices. And now, rather than condescend to her because of what I consider her vapid choices – I am falling apart because even though people come and regularly take her out, even though she has more friends and contacts than I do, what she mostly does is watch TV and talk about how boring life is. Her biggest pleasure is being told how good she looks and is this really what it’s come down to for her? And what have I learned? Sure, I’m “different.” I’ve no interest in manicures or pedicures. I do love clothes, get my hair done every three or four months and yes, I love it when I’m told I look younger than my years. But what else? I spend my days working, then going home and reading. I love my daughter as much as I can, keep her in mind always, find ways to show her my love. But there are ways in life I’ve given up and there are things about the kind of life I want to live that I try not to think about, that I’m frightened to consider because I believe it’s not possible. Am I really no different than my mother?

© 2022 Denise Smyth

Reckoning Part 1

(I am posting this in two parts as after I finished it, it seemed too long.)

Of course everything changes. Since I’m here for ten days I figured the constant would be spending early mornings in this rocking chair by the bay, thinking and writing. When I was sitting here earlier it seemed money would be the thing today.  Then it all got twisted – phone calls from both last night and this morning haven’t changed the fact that I need to deal with money but have pissed me off so I’m not sure how to begin. And it pulls in so many situations, with so many people…the bay is still here, the clouds both harmless and threatening, I’m still rocking in my chair, trying to breathe. Serenity cannot be forced.

I’ve lots of fear around money which tells me I haven’t a whole lot of faith. I don’t mean the kind of faith that says “Don’t worry, everything will be all right.” Because my definition of “all right” in any given situation might not be what is so. That doesn’t mean the outcome was wrong, just different. If I insist only my way is correct I’m in for a world of sorrow, disappointment and rage. A better definition of faith is, “I will be able to handle this and there is help to ask for if I need it.” I’d do well to stick with that when it comes to money. Of course, that also requires my willingness to admit I need help and the humility to ask for it. I prefer to do things on my own. I have an attitude of “who needs you?” born from needing to take care of myself best as I could since I was a kid. Early example: first day of Kindergarten meant all us little ones were brought to the school cafeteria and assigned to tables based on who our new teacher was to be. I walked in happy and confident and looked around at the myriad of crying kids clinging to their parents. What babies, I thought. Who cries over their parents? I took my seat at the head of the table and never looked back.

By 5-years-old I’d learned the value of “not needing,” which was really a survival skill. It’s also a hindrance as no person is an island. Insisting that’s true requires denial and self-deception. But back to money, and to start with, Alzheimer’s. My mom’s Alzheimer’s has forced my brother and I to look at her finances. My mom has always been independent . My dad died nine year ago and she’s been living in their single family home since. She has a family friend who sees to any repairs that she might need. She has a car, so she comes and goes as she pleases.  My brother and I have never been on top of her finances but there was never a need to be. She’s got Social Security and a couple of pensions from my dad. She has my uncle M (her brother) who (we thought) she could rely on who lives close by, and another decades-old friend who’s an accountant who helps her pay her bills and file her taxes.

A friend of Maria’s here at the shore has met my mom and adores her. You probably would, too. You didn’t grow up with her. She’s a friendly old lady who looks terrific for her age and that has big cachet. But not as big as it drawbacks. Last April my mom spent $800 at her hairdresser, which doesn’t include the $200 gift certificate given her as a birthday present that month. That is an outrageous amount for someone on a small fixed income. She goes to her hairdresser every Friday – for all she forgets from Alzheimer’s, that she never does. I’m sure it’s because she’s been doing it for decades. I called her hairdresser to set limits. Then there’s her nails. We found out she’d been going two – three times a week to get tips put on at $80 a pop, going home and pulling them off, forgetting she did so and going back a day or two later and doing it again. My mom’s friend M reported this to me, and told me the woman at the nail salon kept trying to talk my mom into a simple and less expensive manicure but my mom became belligerent and insisted on her tips. I went to the salon and spoke to the owner myself, then had to tell my mom no more. She didn’t believe me, insisted she didn’t pull them off, insisted she wanted her tips.

My brother and I have since had to take her car away as both her GP and Neurologist say she can no longer drive. In case we needed proof, R pulled the car out of the garage a few weeks after we took her keys away and discovered a huge dent in the driver’s side fender that went from the top of the hood to under the bumper, along with a hole in the fender. She didn’t know it was there. And when R brought the car to the body shop to appraise the damage, the mechanic asked if we also wanted to fix the dent on the passenger side, the one we we hadn’t noticed. 

We’ve hired a companion who drives my mom around and who has instructions that she is only to get a manicure and only once a week. We’ve been working with a senior advisor to set up a trust so she can get Medicaid which will pay for home care in a way that her Medicare won’t. We are working to get her the VA benefits she’s entitled to since my dad was a veteran during the Korean War. We’ve had to look into her reverse mortgage which means her crazy expensive one-family-semi-attached-home-with-a-tiny-concrete-backyard is worth a fraction of its value to her since she spent most of what it’s worth. I don’t exactly understand reverse mortgages, don’t want to. All I know is money I thought would be available to take care of her in her old age should she need it is not there. Neither is what I also thought would be both my and my brother’s inheritance.

Talking about inheriting is embarrassing. When I think about it I automatically look at it from the outside in, meaning what it is you all (whoever “you-all” might be) will think of me. That I am callous and greedy. That my mom has Alzheimer’s and I am worrying about the wrong things. It doesn’t, of course, matter what anyone thinks. It matters that I look from the inside out, at what is driving the way I react. This is a tough one – a really, really tough one – because there is a lot of pain here, pain I’ve managed to put off dealing with because I never thought I’d be in the position of having to deal with my mother in this way. I come from what people call “good genes.” My family is pretty healthy and for whatever my uncles who’ve passed have died from, no one has gotten Alzheimer’s. I just assumed one day my mom would die, my brother and I would sell the house and split the money. And not that it would be a terribly lot of money, but enough that I could finally buy something for myself somewhere that I’d actually want to live.

Next, Part 2

© 2022 Denise Smyth

Blood From A Stone

When Philip first died I thought, what could ever bother me again? What could ever be so bad that I would care that much, as long it wasn’t about Natalie? I saw his death as the second worst thing that could ever happen to me, as the first would be to lose both my children. 

Ten years on and things do bother me. Writing is my attempt to keep them in perspective, writing today is just to vent because the post I’ve been working on is so difficult to unravel I am starting to lose my shit. How to examine life with my family, something I’ve not taken a good, close look at? Not just my growing-up-with family, or my married-with-kids family, but my large, extended family, too. I’ve kept a distance from them since I was old enough to move out on my own at 22. I’d see them at family occasions but was never one to reach out. On my mom’s side were six brothers, most of whom married, some of whom had kids. On my dad’s side were two sisters, but they wound up moving to different states and since my mom didn’t much like his family and she ruled the roost, my focus has always been on her side.

I didn’t even much keep in touch with Maria, my sister-cousin. I never made a conscious decision about my family one way or another. I was absorbed in my own life and my family was on the periphery. I didn’t like my parents, loved my aunts, uncles and cousins but felt different from all of them. Plus – and this is something I don’t yet understand about myself – I don’t maintain bonds with people. I have no friends from childhood, was unable to stay married. I make friends here and there, invariably let them fall away. I shy away from people in general, I spend a lot of time alone. My children are the exception. 

I come from a loud, funny, boisterous Italian family who got together every Sunday for dinner. Might sound like a minor point, but since my mom is the only female out of seven children, once she married her last name changed which meant my last name was different from the rest of the family and when I was old enough to realize that I added it to my list of resentments as well as the list of Why I Am Different From Them. I put myself in a double bind – I resented my immediate family for what they couldn’t give me and was desperate but unable to feel part of my extended family. I didn’t blame them. It was my fault. They were uninhibited, I was self-conscious. I wasn’t funny the way they were. I was withdrawn and uncomfortable and had a book with me wherever I went. I once heard an aunt remark, “Look at her. She forgot her book so she’s reading the TV Guide.” I don’t know how she meant it, but I took as some kind of slur against me.

I did not come from a family of readers – the only one who read was my dad and I looked down my nose at him as he read what I considered cheap, easy-read paperbacks. Were they? I don’t know. What I do know is I was a sensitive, precocious kid, possessed an intelligence neither of my parents had, was exceptionally bright in school. I clung to that intelligence because it was all I had, at the same time feeling ashamed of it as it was something that yet again kept me apart from my family. No one in my family went to college and that was the track I was on. My dad’s reading was inconvenient for me because I wanted to be nothing like him so I had to write it off as inconsequential. I might have felt sorry for myself for feeling like an outsider, but I also cherished it. 

And I started drinking when I was 11 because it was just too much to deal with.

I do not want to get into politics in this blog. It’s too painful. I used to follow the news avidly until Philip died. I felt flayed by his death and anything contentious was like sticking burning brands into my already tattered flesh. It was all beside the point. I am bringing it up now to make starkly clear the differences between me and my family. They are all rabid Trump fans. As in Michael-Savage-believing, Alex-Jones-listening, January 6th was no-big-deal-excusing, Trump-can-do-no-wrong affirming, MAGA-flag-flying Republicans. I am not. 

That screams volumes about the differences in the ways my family and I approach life. Inherent in that is a wound that won’t heal. I’ve never asked myself what it is I want from my family. Love, of course. But I can’t say that they don’t love me…I want to be seen. There. That’s what it is. I am not seen by them and having said that, it is way past time to let it go. Blood from a stone and all.

 I have felt guilty for not keeping in touch with them, particularly aunts and uncles. But that guilt was born from realizing Maria does keep in touch them, always did. At this point in our lives we are down to two aunts and two uncles, but she invites them to her home, makes plans to go out for lunch or dinner with them, calls them regularly, has group texts going that even include my brother. I don’t even know what I would say to them if I called, and to be fair, I know those group texts are Trump-related so why would I be included in them anyway?

Recent interactions with my two uncles (my mother’s two remaining brothers) regarding my mother’s Alzheimer’s and her financial state have shown me who these men are as well as helped me understand why I do not and cannot consider them the kind of family I can turn to. I’ll be going into greater detail about this as I write more about my mom and Alzheimer’s . But since I started working for Maria’s husband two years ago (he’s a doctor, I’m the office manager), since I’ve been coming down to the shore and spending more time with her these last three years, and since my mom developed Alzheimer’s, I’ve been forced into family dynamics in a way I have never been. I am seeing real, adult reasons why I can’t have the intimacy I imagine other families have, not childish projections of being not only unloved but disliked by them because I am just not enough. And as usual, while I am very good at seeing the why’s of the thing being unattainable, I am not well-versed in the how’s of getting what I want. I’d do well to first consider what that is.

© 2022 Denise Smyth

Surface Dive

Self-centeredness, self-pity. Traits, I’m told, of the alcoholic. Traits, I say, of humans. But in the context of addiction, the work is to learn to live sober and these are two of the things to pay honest attention to on the road to recovery.

Note – it might be prudent to explain my mother’s current condition. She is fairly healthy for 90, on two medications for her memory and one for high blood pressure. She can, with difficulty, get up and down the stairs on her own, can bathe and use the bathroom on her own. She dresses herself. She is no longer allowed to drive, which is causing her great angst. She remembers things from long ago but forgets what happened two minutes ago. I have called her within a few minutes of someone else calling her and she does not remember talking to that other person. She will often call me after I’ve spoken to her to ask if I just called and what we talked about. She repeats the same questions over and over during conversations and repeats the same sentences no matter how many times you call or how often you speak to her. She is irritable. She is at a point in this disease where it is not clear what she needs, but it is clear she should have even a few hours of daily company which is why we’ve hired someone.

I am going to start by indulging in self-centeredness. My mom’s Alzheimer’s might not be about me but that’s how I come at it. My behavior does not reflect this. My rage does. I call my mom regularly, stay on top of her caregiver, am working to get her Medicaid, helping to manage her finances. All this I do with my brother R. and sister-in-law M. and I try to focus not only on the fact that I am doing for this for them, but that being in this situation has brought me close to them in ways that previously did not exist. So mom, thank you .

Overriding all is rage. “Radical Compassion” by Tara Brach has been suggested reading for me. Once in a while I’ll actually purchase something suggested, most of the time I’ll read a couple pages before it finds its place, in alphabetical order, on the “Definitely Later” Shelf. The fact that I’ve purchased a title in book form instead of as a virtual download doesn’t give it much chance of being read. I read mostly fiction on my iPad as it is easier on my aging eyes and for the last two years it’s been difficult to get me to read anything beyond historical fiction dedicated to The Tudors and the centuries prior to their reign.

But I have begun to read “Radical Compassion,” which discusses meditation by the RAIN method. If you’re as disenchanted with meditation as I am, I’d suggest you give this book a shot. RAIN stands for Recognize – Allow – Investigate – Nurture. Since I’ve only read about 50 pages of the book, if you like what I say go ahead and get it for yourself to see what the whole thing is about because I sure don’t know. I plan on reading more, but I’ve begun to work with the first few steps which are much more interesting – as well as more painful – than my usual way of meditation which involves sitting quietly and focusing on my breath. Then when I notice I’m thinking, I label my thoughts, “thinking,” and bring my attention back to my breath, and so on. I admit to never having given that enough of a chance – I’ve done it for weeks at a time, then lost interest.

As for RAIN, I’ve gone through the first few steps, using my mom’s Alzheimer’s as a starting point. Recognizing, which means simply recognizing what I’m feeling. Allowing, letting my feelings be. No judging, ignoring, wishing them away. Investigate – this is the interesting part. Brach writes specific questions regarding this stage in case you’re having trouble. I left out the Nurture part for now. But I came up with a couple realizations and lots of self-centeredness.

It’s not just that I’m enraged that my mom has Alzheimer’s and that I am powerless over this. It’s realizing what’s expected of me and I want none of it. I am trapped in this. My mom needs help and Alzheimer’s does not get better. It’s progressive and unpredictable. It can take months or years to reach full progression. It is costly and having taken a look at her finances, she doesn’t have what she needs which is yet more angst as I find myself wanting to screech My dad did not deal with this and I certainly am not going to! She needs daily attention and we do not know when this will turn into hourly attention. To that end, my brother and I are working with a Senior Advisor to get additional insurance in place for her to be able to get her the help she needs. The goal is to keep her in her house. Which, I might add, does not have a bathroom on the main floor nor space to add one. She can get up and down the stairs for now, but for how long?

R and M have been going the extra mile. They live closer and will pick her up to take her places. My brother works in Brooklyn and will at times stop by after work to see how she’s doing. I’m in New Jersey. Not so far, but travel there is through the Highways of Hell (for any who gets it: Garden State, Route 280, NJ Turnpike, Staten Island Expressway, plus two bridges thrown in) and the early morning 50 minute drive invariably turns into at least 2-1/2 hours to get home.

Sitting quietly and “investigating” brought up only the tip of what I’m experiencing. I’ve already known I want no part of this, that when I sit and think about it, I feel the anxiety. I am ashamed that these feelings will be seen by my brother and M and they will hate me for it. I am afraid this is going to go on for a long time and I will not be able to keep this pretense up. I am angry about what’s to come – the act of going to her house and dealing the decades-old accumulation of boxes and paper and what looks to me like junk that’s held on to for the sake of holding on. It is hard to breathe in that house, the house I grew up in since third grade, the house I flew out of at 22 as soon as I was able. Still I feel whatever I am saying here is at surface level. Still I must do a deeper dive if I’m to come to a real understanding of what’s driving me. But the closest I’ve come to something new is the fact that I have depended upon my mother to be the one to the blame and without her, without that, who am I?

© 2022 Denise Smyth

Prelude

I am angry, I wrote in my last. Once I had someone sigh and say, “That again?” Yes, that again. Like what, it has a term period? A date of ending, when I can check it off the calendar as done and over?

Truth is, what I have needed to do is slow down and pull apart the tentacles of my anger, to look at what it is these tentacles are clinging to. I’ve pushed aside, for later, what seems too unwieldy in order to peer more closely at those things I feel ready to contemplate. And there is nothing I am angry at that is not born from a lack of control. Nothing.

I am angry at the weather, the heat and lack of rain. I am angry that Trump is. I am angry that I – literally – do not know what to do when it’s my choice. Work and obligations aside, most of what I want to do is read, with maybe some TV on the weekends. That doesn’t much hold my interest, either, although I’m pretty happy with Succession. I don’t want to go out and meet people, there’s nowhere in particular I want to go, and I’m frustrated and angry that I am not someone who can say, “Hey, I’d like to ____ and then go find someone to do this mysterious activity with me.

I could go on. But I’m going to get to the one thing that angers me the most – my mom has Alzheimer’s and where to start with that? I will thank you all for your sympathy in advance. Direct it at her. While my part in this story can’t be unique, I don’t think it follows the usual trajectory in terms of feelings. But what do I know? Maybe posting this will show me different.

No matter what we’re suffering, our personalities, experiences, and habitual ways of dealing with things will surface and color our reactions, if not our actual actions. Sometimes we have the forethought to understand we might feel like saying, “fuck this” and then walking away, but something more rational takes over, sees the implications of such action, and maybe tries to do better.

Like me.

I don’t think I’ve ever really sat here and took a good, deep look at the relationship I have with my mother, who I see her as and who I see myself as in this context. In fact, a few years ago I decided I wanted to turn my blog into a memoir. During the writing it hit me how much a part of my story my mother is. There was an incident that occurred a few days after Philip died that I wanted to write and I went dumb. There I was, writing the most excruciating account, day by day, of what I felt like losing Philip, but I could not figure out how to describe an incident that concerned my mother. It was after that that I gave up the memoir, started writing much less in my blog. That is not the whole and complete reason for my withdrawal from writing. It is, perhaps, a tentacle.

Mom and I are oil and water, which I can pretty much say about my whole family. Yes, I am that one. I’d always felt on the outside but refused to think too deeply about why. I come from a large Italian family where every Sunday was spent at Grandma’s. My mom was the only girl out of seven siblings, which placed a unique burden on her when time came to helping with chores or taking care of the little ones. Two of her brothers were younger than she and she was often responsible for them. My mom’s 90, and there is one of them she still feels responsible for. In fact, in younger days when my dad was alive, the family joke was that if my dad was lying in the road and Uncle M was across the street, my mom would walk over my dad to get to my Uncle. Wasn’t any funnier then than it is now.

I used to think that maybe I felt odd because I was the only daughter of the only daughter. When Sunday dinners came around, My family would have to get to my grandparents’ extra early because my mom had to help my grandma get dinner ready. Soon as I was able, I had to do my part, whether it was putting glasses on the table or running downstairs to the club – where the men would gather and play cards while the women cooked – to get the men to come upstairs for dinner. 

Another reason I may have felt odd was because I wanted to drink. When I was 7 or 8 I asked my mom if I could have one of the cordials in that glass that just so cute. My mom said yes but my dad overheard and forbade it. I hated him then, but by 3 or so years later I figured out how to get some myself.  My grandparents made wine in the cellar, and while everyone (except the kids) drank, it was obvious that my grandfather was alcoholic. 25 Years in this county and he did not speak one word of English – only his native Italian. Many a time he’d be escorted into bed or another room, happily singing drunken tunes. Once, during dinner, there was a commotion during desert as my grandmother began hitting my grandfather over the head. Turns out he’d poured wine into his coffee cup and was blowing on it as if it was coffee because my grandmother had given him stern orders not to have wine at the table.

My grandmother lived in a two story house in Brooklyn on the top floor. The bottom, as I mentioned, was the club where my dad, my uncles and their friends hung out. On the second floor lived my Aunt J., Uncle G., Cousin R. and Cousin Maria, who is exactly two years older than I am and the sister of my heart.

I have lived very much outside the lives of the family I grew up with. Most of my uncles stayed in Brooklyn, cousins scattered to NJ, Long Island, Staten Island. My brother and sister-in-law moved to Staten Island, and I wound up in NJ with my immediate family when Philip was 7 and Natalie 5. I kept in touch with my cousin Maria on and off throughout the years – and if you’re a follower you might remember Maria was the first person I called when I found out Philip died. For the last two years I’ve worked for her and her husband, and they have graciously allowed me to escape to their shore home when I need to.

This has been a short but necessary background – next, Alzheimer’s

© 2022 Denise Smyth