I Am, They Are

16 Oct 2022 2 Comments

by Denise in Alzheimer, anger, Family, loneliness Tags: , , , , ,

During the summer my brother and I, after speaking with my mother’s doctors, took her car away. There was no choice in this. She is 90 and has Alzheimer’s. She was getting lost driving to places she’d been going for years, she would park her car and forget where it was. That was the least of it. Driving is deadly dangerous for her and anyone who might come in contact with her. And though we needed no proof, when my brother pulled her car out of the garage the driver’s side fender was bashed in from something she hit, and hit hard. The other side of the fender was also banged up. When asked, my mother didn’t know how it happened.

Back then I was enlisting the help of Uncle M. At 88, he is her younger brother, one of two who remain alive. My mom worked for him for years and he had been giving her $1500 a month for a long time, money that went a long way toward supplementing her social security and the small pension left to her since my dad died nine years ago. Uncle M was also the only uncle I felt close to. For years I’d dreamt of what my life would have been like if only he’d been my dad. When we had to take my mom’s car away, I told him we’d set up car service and Uber on her phone, asked if he’d help out, maybe take her to her weekly hair appointment on Fridays. Of course I will, he said.

Except that a few days later he called to say that my mother is an excellent driver, and really, we shouldn’t take her car away. I explained – again – that there wasn’t a choice. We had it on her doctors’ authority, but common sense alone dictated. This only agitated my uncle who insisted that if we take her car away, we were going to kill her. “She will be dead if you do this,” he said. He went on to say that he wouldn’t have to take her to hair appointment because if we took her car away, she would be dead by the time Friday rolled around. My last shot was to explain that she could not only hurt herself if she kept driving, she could hurt, maybe kill, other people. “That is not my concern,” he informed me. “My sister is my concern. And if you take her car away, you will kill her.”

It was after that that he stopped giving her money. I can make no sense of this except that he is angry at both my brother and me, so he stopped giving money to my mom…to spite us? Since the summer, we have had to find an aide to go to my mom’s house as she needs company and she needs help getting around now that she has no car. My mother has to pay for this aide. I tried to appeal to my uncle to keep giving her that money as things are very tight for her without it. His answer was that she should spend all the money she has and then we will talk. “All the money she has?” My mom has next to nothing. There’s a reverse mortgage on her house which is mostly spent. There’s a small amount in her savings which isn’t going to stave off much of anything. I wasn’t asking anything of my uncle except to keep doing what he’d been doing. And I would add that my uncle is a wealthy, single man with no children.

I would like to say I see how sick my uncle is – I have seen this for years, but never had it directed at me. I would like to say that, seeing him as sick, I treated him with empathy. But that would be a lie. I told him exactly what I thought about this craziness and then some. I said things to him that others could not believe I said when I repeated the conversation. Nothing that wasn’t true, but things designed to hit below the belt. Things that, according to any 12-step program, I should be making amends for, because my intent was to hurt, to wound, to scar.

I have taken a good look at all this. I have written about my resentments, I have tried to see my part (it always takes two), I have spoken about this to others. I have asked Philip to help me let go of this damn resentment because it only hurts me. Then last week I found out my uncle took my mom out to dinner and I had a moment of grace. Because instead of seeing my uncle as the enemy, I saw two elderly people going out for an early dinner. I wondered what they talked about, what they were thinking about. I wondered if my uncle was watching my mother, who’d taken care of him in so many ways since he was a child, slipping away. My uncle is a recluse, does not have many people in his life. He’s gone from five brothers to now only one – the one he doesn’t get along with – and my mom is just not who she was. My heart hurt for all of it, for inevitability and what often seems the impossibility of life. And I decided I’d rather my heart break than live in rage and resentment. 

Which lasted a couple days until my sister-in-law called to tell me that my uncle had my mother drive to dinner. He what? Your mother told me, she said. He had her drive to dinner and back. Re-enter eye-popping, jaw-clenching, stomach-churning outrage.

My impulse was to call him and chew him out, or call my cousin Maria to have her chew him out. Get her on my side, once and for all. My uncle calls Maria when he wants to know about my mom. I have asked her multiple times to tell him to call either me or my brother (he is angry at both of us) if he wants information. And I have believed my cousin would do that. Except that over the summer, I was there when my uncle called her for just that reason. Her phone rang, her eyes widened when she who it was, she looked at me, looked back at the phone, back at me and said in a strangled voice, “It’s him.” I’m right here, I told her. If he asks about my mom, tell him I’m here and I’ll speak with him. 

Except she couldn’t. She stuttered and mumbled, and wound up saying that I was there but I was in the other room, did he want her to get me? His answer was shouted loud enough for me to hear. I could not understand – how could she betray me, how could she let him off the hook? Are you afraid of him, I asked when she hung up? She shrugged. No – he just yells and yells and then I can ’t think straight.

I have to wonder how long I will continue to look for love and acceptance where it cannot be found, why I have not yet learned that no matter how hard I squeeze a stone not a single drop of blood will flow. As furious as I was, that was the moment the shift began. My anger, my sense of “betrayal” was born of my refusal to open my eyes to who I was dealing with, something I should have learned a long, long time ago. Insisting anyone behave the way I want is exercising a control I do not have. Being smart about someone is knowing who they are and understanding what to expect. It is not only smart, it’s the only way to take care of myself. I was raised in a family prone to outrage and drama. I have distanced myself from them. Yet when I’m with them, there go I. Just because I indulge less does not absolve me from behavior I abhor in others.

I have suffered this. I have reeked of self-pity. I have seesawed between believing I am “better” than they to being unfit to grace the bottom of their shoes. And I am lonely because they all get along, don’t see as I do, and I feel invisible. It’s past time to get my head on straight. In truth I haven’t much in common with any of them. I have a romantic notion of how it was growing up in this big, loud, boisterous Italian family with our every-Sunday dinners and wasn’t it wonderful to have all of us together? But it wasn’t always so wonderful. Even then I didn’t feel I belonged and since I didn’t yet have the ability to reason why, I blamed a big part of it on my dad. All my cousins had the same last name, but since my mom was the only female, she changed her name when she married, black-and-white proof of my difference.

Truth is, I am, they are. Given my mother’s condition, there will be times I’m forced to deal with my family. Like when I found out Uncle M let my mom drive. Something had to be done, no? So I did it. I breathed, then I breathed some more. I spoke to my sister-in-law, to my brother. We agreed there was nothing we could do about it, that screaming at my Uncle would upset us and probably satisfy him.  I cannot control this. I cannot make my Uncle see the danger, I cannot make my mother understand. And I sure as hell can’t sit and seethe with resentment over something I can do nothing about. 

© 2022 Denise Smyth

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Reckoning Part 1

04 Sep 2022 5 Comments

by Denise in Alzheimer, anger, Family, Money Tags: , , , ,

(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

Surface Dive

21 Aug 2022 1 Comment

by Denise in alcoholism, Alzheimer, anger, Family, meditation Tags: , , , ,

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

14 Aug 2022 2 Comments

by Denise in Addiction, alcoholism, Alzheimer, anger, Death of a Child, Family Tags: , , , , ,

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