Every time I think I have more control of my own life, like I have more me time, like I can focus on myself and be me, there feels like there is some sort of setback. Like I'm back at putting the focus back on my mom and off me. It's like I'm becoming a peripheral character in my own story.
So as you know it was another trip to the emergency room via ambulance. Thank God I had the good sense to call for medics. It was her second UTI since she's been with me. I seriously remain clueless when it comes to urinary track infections. I can't believe how biologically devastating they are and even mentally debilitating they are. It was her mental state that made me call for medics. She could answer the beginning of a question and then finished all statements by singing Thank You, Jesus. Thank You, Jesus. I'm embarrassed to say that initially I thought it was normal, then a cute proclamation of her faith, and I even thought it was kind of funny. But it began to shift into something odd, or probably better yet I began to recognize it as odd. When the medics arrived she continued the Thank You, Jesus song. And as we arrived to the emergency room, she again entertained every one who spoke to her with the same song. Turns out she had a temperature of 101.2. I really don't understand how a urinary track infection messes with the brain so; how it makes someone behave so out of character, so confused, so odd. It actually confuses me.
You know what's crazy and depressing as hell?
I'm in a scene study class and currently working on a scene from the play The Waverly Gallery by Kenneth Lonergan, and it's depressing the hell out of me. I see me and my mom throughout much of it. While my mom went to a neurologist since she's been here and had multiple MRIs we never received an affirmative in any sort of mental decline or mental disease. But she has continued her daily regimen of Memantine twice a day and Donepezil (Aricept) once a day. But this encounter with this past UTI was creepy. She was confused. She was odd. She was way way out of character. Then strangely after a few bags of antibiotics she was more coherent. Why the heck is that? While on her antibiotic regimen, oddities popped up every now and then, but as she continued with the antibiotics, she became more clear headed.
So as I read this play, the impatience, the lying just to end the confusion, the having to speak loudly, the confusion as to if the confusion is connected to mental decline or hearing loss, the having to take in this parent into my home, the having to figure out whether to keep the parent at home or put her in a nursing home, the guilt for thinking that, the sleepless nights, even the humming she has started doing or I have recently recognized. I experience so much of this. I guess I am just still in shock as to how many of us are having these same or similar experiences, and how equally clueless or shocked many of us are collectively.
But through all of this, I am struggling to take care of me. Under my eyes is nearly purple. My weight is through the roof. I am struggling to motivate myself to do anything for me. These emergencies so often come up when I have plans for me. My time to go out and have fun is regularly obliterated. I have to toss it out the window. I wanted to put more time into just exercising and being healthier but then I have to do something for her. It makes the whole Seasonal Affective Disorder feel bigger than life, but the thought of spring coming and me being stuck inside with caring for my mom, or afraid to do anything on a Saturday or Sunday morning because I have to entertain my mom, or just feeling guilty as shit for thinking any of this, ugh.....
How does this make me feel?
Exhausted to such a depth as I have never visited before. I am just plain tired. I mean I am deeply tired. But I did re-join New York Road Runners. I hope to get out and do some weekend races again. I dread some crisis will pop up before I can just have fun or before I can just leave the house. I still sneak out. Turning off the alarm and walking miles. It's the only way I can figure out how to have a life. Other than sneaking out or omiting my plans or even my auditions in our conversations, I can't figure out how to reclaim my life, my time, my space. I can't figure out how to have a life while taking care of my mom's life. Like Lonergan's play, I fear I'll be like his characters. That I will be in this shrinking bubble of absurdity for a while and losing myself the entire time. The character that I am becoming shifts constantly displaying traits I'm not used to owning. It's like I don't recognize myself, but I am growing used to seeing this middle aged woman who keeps popping up in my mirror with her ever appearing new grey stands and soft muscles who seldom, if ever, sees her own old friends. This shit is hard. And I now swear a lot. Damn.
This may sound crazy but it really has just occurred to me that in my current situation of being fully responsible for this other adult human being that I have been neglecting myself on a regular basis. And truthfully I find it challenging to take care of myself or to at least pencil in time for me.
My favorite exercise or activity or whatever you want to call it is walking. I absolutely loving going for a walk. And in the past when it was just me that meant waking up and going for a long walk (3-8 miles) around 6 or 7 AM. Now, that is the time I must get my mom ready for her daily activities, or I just somehow feel obligated to take care of her when my day begins.
She's looking good too. She looks so happy and healthy (compared to a year ago), and just overall good. She is taken care of fully. But me...well...
I had a volleyball game this past week and that's where I had my eye opening revelation into myself. I felt heavy, sluggish, weak and slow. My regular gym clothes were way too tight. My feet hurt which is the result of the work I do and the shoes I wear. I didn't feel like myself and didn't play like I normally do. My timing was way off, my skills were icky, I couldn't jump worth nothing. I was the weak link on my team which is composed of men and women all in our late 40s to late 50s. This person I was on that court that night wasn't comfortable. My neglect of myself was on full display and I finally saw it.
How do I make the changes given my current circumstances?
I am tired a lot, and if I'm really honest with myself, I'd say that I am emotionally tired. My mother calls my name a lot. Her TV is so very loud (a reminder of another financial woe). She has some peculiar habits that rock my nerves. My senior dog has to be walked and fed. My senior cat has suddenly grown older, slower, skinnier and developed a exceptionally sensitive stomach, and definitely needs to go to the vet in the midst of this endless expense storm in my life, but the vet loves to dole out $500 to $1,400 bills...Who has that?
I'm not the happiest when I come home and look at the mountain of stuff needing to be done. And having zero opportunity to just do it because my mom will call me and call me and call me. (More on how I now deal with that later.) I hate the door alarm I set up for her (and for me in case she decides to wander off in the middle of the night again). But the door alarm is something I can control when I'm home. It's when I come home after she's returned home that the alarm is set and screams my arrival. I miss the anonymity of walking quietly through my own door, coming and going as I please. That screaming noise blasting my eardrums is a constant reminder of the changes in my life.
Who is this woman?
I eat poorly and way too often. It's all emotional eating. I feel so stuck at times. Before I spend money, I'm constantly having to think ahead to her expenses (I realize thinking ahead before spending isn't bad at all, but it does get exhausting). In an effort to save our financial life my gym membership was one of the first things I got rid of, but to be honest I really stopped going. With my sporadic work schedule, my mom, my dog, and now my cat I didn't know how to make time to get there. It suddenly seemed so far away.
Everything in my home feels like such a big effort as does everything outside my home. Of course this isn't all the time every day, but right at this second the light at the end of the tunnel feels so far away.
But what does that light look like?
Actually, to be honest, I've been feeling the presence of that light lately, the possibility of a positive shift.
Here's where I finally began to snap out of whatever this foggy mental state was:
So for the last several months, my mom has had a negative bank account between -400$ and -500$ on a regular basis. I kept trying to find ways to trim our expenses. So often I would have to pay the caretaker 2 to 3 weeks late. It just kept feeling like something else kept popping up from the copay for the hospital stay, the ambulance ride, her neighbors paying for lawn upkeep, her long time friend doing her taxes for her, the steep copay for her prescription medicine, her regular bridge games, her need for daily newspapers, and the biggest expense, regular care. This was draining us.
But finally, after a year, I began to look closely at her bank account. Her regular automatic payments totaled over $1,100 per month with about $650 of that going to life insurances. The weekend I spent purging my room put the spirit of purging within me as I began purging her automatic payments starting with the life insurances surrendering all by 3. When those first checks arrived, for the first time in 6 months I could pay our bills on time as well as our caretaker.
Funny how fixing my finances gave me the energy I desired to begin taking care of myself again. The easy part is rolling out of bed onto my yoga mat and just stretching and then doing simple exercises like sit ups and push ups and such. I feel kind of good too putting on some of my favorite 70s and 80s music going at whatever pace I want to go.
But how did I start walking again?
I had to just go. I turned off the door alarm and sneaked out. And I walked and walked and it felt so good. It occurred to me that I feel guilty leaving my mom in the house on a nice Saturday morning. I felt guilty justifying leaving my mom behind because she's slow and wasn't dressed and would take well over an hour to get herself together. I knew if I didn't just go when it hit me, I wouldn't do it.
As it is now, I realize I have surrendered too much of myself. She has become the priority. But I am actively stopping that. I don't run every time she calls me any more. I don't jump up anymore. I have accepted that she will spend her weekends in front of the television. She likes it. I don't have a yard for her to sit in. She has begun leaving the apartment to visit a neighbor on another floor, but I have relaxed my anxiety about her leaving. I don't make it a priority to sit in her bedroom keeping her company like I used to. I would do this even when I had things to do pushing my own schedule later and later. She would whine and pout and literally throw a tantrum until I sat there. I can't do that anymore. I sit but not as long. I break it up.
Another source of guilt: Having a caretaker
One, because the expense is serious. Two, because sometimes I'm home and still have her scheduled to come take my mom away somewhere. Today she took my mom to get her nails done. There's this voice in me trying to get my attention in all of this and it's telling me I should feel guilty and ashamed. But then I keep thinking about the teensy bit of freedom it gives me especially when I'm home. I love being home when my mom leaves to go someplace. I love having the place to myself once again. I always want to get things done but so often I find myself falling asleep. It's just nice. And there is so much about this situation that drives me absolutely crazy especially things my mom does. For example, she gossips about me to her caretaker or to someone on the phone and I'm always right there. She forgets or doesn't make the connection or it's just that childlike absence of thinking things through. I'm there. And she's loudly speaking mean in the things about me in innocent clueless abandon. Then she will follow it up with something about God.
Another thing stealing away peace of mind...
The high dramatic act she puts on when she wants something for this pain. Oh sweet Jezus, that act pulls the devil out of me. She's an awful actress, so predictable, and it drives even her caretaker crazy. And so does it so often with such frequency that it's like a perpetual cry of wolf. The caretaker and I realized she makes it hard to tell when she's really sick.
Since I've begun this draft my mom has been taken back to the hospital, another UTI. And the good that has come out of that is now I do know a difference between when she is really sick and when she is sincerely ill and when she is being dramatic. There is, unfortunately, an overlap. And I will say this to that in the interest of my recovering my mental health as I take care of my mom (and senior pets), I will continue to allow help to be apart of my life. I accept that I need help through this and I am okay with paying for her. I accept that I am just that kind of person. And we have been making it work too.
We got sick two weekends ago. We both did. It began with N not being able to come to work because she was sick. So, I took my mom to bridge that day. I listened as one guy coughed and coughed and coughed. I didn't think anything of it at the time. He coughed all over the place too. Now I see the connection. That was a Friday afternoon.
By Friday evening at home, my mom coughed quite a bit spitting up a good amount of mucus each time. No lie, each time she did this in my presence, I would gag a little...ugh. Then I coughed and it grew deeper and mucus-y. Saturday we sat in a local travel agency office to get a document notarized. We sat there for 3 hours for a task that took them all of 65 seconds. It was a cold, damp day, and we sat there coughing and hacking. By the time we got home we were both coughing harder. Later that night, bile squished out the sides of her Depends, made its way to her clothes, hands and face, and I was vomiting pretty good. We never ate the same thing that weekend. So it wasn't food poisoning.
By Sunday my head throbbed continuously and I couldn't even hold down water. My mom was in some sort of weird drunken stupor smearing crap all over herself. [Side note: Over the counter pain meds take my mom way out of character. She behaves oddly almost drunk like and just weird.] Earlier that Friday, before we got sick, I had literally put clean sheets on her bed while she bathed before going to play bridge. By Sunday morning I would have to change her sheets and clothes 3 more times. I would have had to put her in the tub the same amount of time, and roughly hold her wrists to keep her from smearing crap all over the place.
By Monday, I had stopped vomitting and she had stopped squirting poo out of the sides of her adult diapers. Also by Monday, she had the nerve to get angry with me for, in the midst of the vomit and crap storm, not going to the bodega to buy her newspapers. I couldn't help but to think about parents of young children when the entire family all got sick at the same time. Parents who had to take care of the kids while simultaneously taking care of themselves without any help or acknowledgment at being sick. That weekend was hard as hell. And my 84 year old was clueless, period.
When I finally got around to washing her laundry, I put the clean clothes on her bed and asked her to fold her own clothes. I was actually kind of proud of myself for finally getting her to do some work, to contribute to some household chores. She folded the clothes then slept on them for two days. I figured I should tell her to put her clothes away, but I wasn't feeling 100% yet, and I just could not understand how she could not figure out to put the underwear, socks and night gowns on her shelves. (She doesn't have a drawer set here. I'm still moving her in even though it's been a year now. I finally ordered a dresser a few days ago. It should be here this weekend. Of course it will have to be assembled by yours truly.)
A few days later, when N finally came over (we were too sick to have my mom go anywhere before), my mom, in her little whiny 5 year old voice, begged N to put away her clean clothes since, as she told N, I didn't. I was pretty ugly grumpy. I wasn't feeling too nice. I interrupted my mom's pitiful act telling her to put her own clothes away. I mean her shelf was (is) all of 6 feet away from her bed. I told her to figure out where they belong since they clearly didn't belong on her bed. That's when I heard my mom mumble, "Go to hell," nice and clear.
Honestly, I was happy to hear her say that. That's because I officially had a reason to hide away, to stay locked away in my room.
After two weeks, we both still have remnants of that cough which means she has not had any of her favorite herb. I've kept it away from her. I figured it was stupid to put smoke in lungs that were still trying to empty out. She has been pissed. I didn't give a damn. After finally returning to work, I injured myself while there, so now for another week I added a throbbing injury to my crap, and had a pouty 84 year old driving me up a wall. She was back to putting on that act that drives me crazy. Where she puts on her I'm so sick, oh this pain, you just don't know how bad this pain is, it goes down my leg, you just don't know...oh woe woe woe. I hate that stuff, seriously.
So, as she did her best wounded animal walk to my bedroom, I slammed the door in her face, every time that wounded animal dragged its pathetic self towards my room. I was just growing tired of being the adult. I mean, dang-gone-it. She was coughing and hacking up globs of disgusting thick mucus, then begging for a smoke. There was no common sense in her anywhere. It was just overwhelming and lopsided. There was only one adult in every whiny argument. And I was pissed and mad as hell. In between all of this, when I showed up to work my coworker praised me for being such a good daughter taking care of my mom.
How did this make me feel? Like crap.
What does it look like to be this "good daughter"? It looks like being on the verge of losing it quite regularly. It looks like a grown middle aged woman locking herself in her bedroom like a 5 year old. It's me with the craziest wildest most wicked thoughts going through my head. Thoughts that embarrass the hell out of me. It's me ignoring my mom every time she called my name during those days...
You're such a good daughter.
What's crazy is how often phrases like that follow a day or week of craziness at home. At least I'm able to keep my mouth shut and just smile and lock my door (well, it doesn't actually lock so I have to get inventive to lock myself in).
It used to be my mom and I used to joke every time we'd visit each other about how much of a baby we'd become when one of us had to return back home. We'd always jokingly say, "I'm a big girl," meaning we weren't going to boo hoo. But that was just a joke because we knew we were going to cry. Dropping my mom off at the airport or getting dropped off at the airport was ridiculous. Trying to stop the flood of tears was never going to happen. Those visits were such a strange emotional rollercoaster of real big highs followed by real deep lows.
Back home going to church with my mom and uncle had me having to fight sobs the entire time. Each visit home I'd look at how impossibly old they were becoming, and how much of this time of their lives I was missing. Strange. It's kind of like a reversal of the absentee parent. I was the absentee kid. They both seemed shorter, thinner. Their skin looked almost transparent. They weren't the well put together people they used to be. They seemed helpless, messy and old.
For a while, my uncle was still rather independent, but his driving scared the bejesus out of everybody. It got to the point where I forbid my mom from ever riding with him again. No one wanted him to drive, but then again no one really wanted him not to drive. That too was a strange mix of feelings. I mean obviously we didn't want him to drive because it wasn't safe for him or anyone else on the road (or sidewalk). But also telling him he was no longer allowed to drive meant a piece of his independence had vanished forever.
Growing old is hard on the one growing old and on those who love them. We see them fading from an independent person and transitioning into a person highly dependent on us. It hurts. It's sad for you, and for them, and for you as you imagine how it must feel for them. Thus I cried a lot in those days.
When my mom arrived last Christmas (2017), and I was instantly thrown in the pool of adult child caring for her parent, I didn't cry during that time. Actually I was angry a lot during that time. I didn't even realize I didn't cry until I looked over at her the other day and felt a softening within me. The familiar moist eye rims caught my attention, and at that moment I realized or rather I remembered how much I used to cry each visit home. Hmmm, now it's occurring to me that I don't think I ever really cried when she visited me. I guess my tears were tied to being back home. To those (my) memories. To those (my) friends. To those busy days that used to be when my step dad was alive, and I lived at home, and all the stuff we used to do.
This past September I officially ended my childhood phone number we had since I was 7 or 8 (somewhere around there when my mom married my step dad). In October, my mom set in motion the plan to sell my childhood home (we moved in right before my 5th birthday). Also in September, I filed a change of address for my mom and finally her mail is coming here.
I asked her yesterday if she missed home. She quickly said, Stop it. She said she has no friends here. Not like she used to have. All of her friendships here are new. All of them. There isn't that person she's known for 60 years, that neighbor across the street who lived there since we moved in (and who passed away two or three years ago), my uncle who lived around the block from the two family flat we lived in before we moved to the house she's now selling (who also passed away two Christmases ago now), the uppity ladies and men at the bridge club she loved to go to where she would also slip into the role of uppity snobby woman. Ugh. She liked playing that role amongst those folks, even around the church folks too. That was until she became the source of gossip among all when she started arriving everywhere with unkempt unwashed clothes, frizzy hair, loud makeup that was seriously inappropriate, moth eaten clothes, smelling of a strong mix of weed and perfume, over medicated, sleepy, sloppy, confused, dropping money from her purse every where she went, purse dragging on the ground, coats that didn't fit and were never quite right for the season, lonely and all alone.
Murmurs began when I would return home in those later years. I began to see the side eye looks some would give me when I visited my mom. Why doesn't her daughter do something was what I began hearing either said directly to me or indirectly. Truthfully I was never fully ready to accept that my mother was no longer capable of being fully independent. Kind of like taking the car away from my uncle. He and my mom were no longer the person they used to be. It was all done, period. And also truthfully I didn't know what to do or how to do whatever it was I was supposed to do. I just didn't know. I lived in one state and she lived in another. I made far less than she did, and I did not want to live back in my hometown in my childhood home.
Fast forward to the present day. I bravely had my mom call one of my cousins the weekend before last to let her know my mom now lived here with me. The last time that cousin and I spoke, she made it her duty to speak on behalf of the entire family of my mom's inability to live by herself. I was hot. She wanted my mom in a nursing home. If they're there in the same town, why don't they make it their duty to check on their aunt regularly, daily. I argued. They (she and her husband, and all of the other cousins who were in agreement) make so much more money than I do. Everyone knows that. She (my mom) took this cousin in giving her a place to live when she was a teenager. She (my mom) took care of a lot of my cousins when they were younger, but that reciprocity I guess my mom hoped for never came. There was and still remains one cousin who is more like a sister to me than a cousin. She always did help my mom and still helps her. As for the others, I was livid. I guess I expected those folks to help out more too. They would, after all, refer to her as their favorite aunt. But none of them helped. Just the one, and maybe one other on occasions.
I'm no longer angry. I have accepted it, my mom's new stage of being fully dependent and my cousins' lack of help. I do pay for my mom's caretaker out of pocket. I mentioned this before. And she does not qualify for any financial aid. She makes too much (which is far from true). Financially this is kicking both of our combined asses, but I am determined to make it work.
God Bless the caretaker, N, who has been with us now since late last winter/early spring. For the past few months she has allowed me to pay her late. She is struggling too, and I know it. This year has begun with less work on my temp work schedule so even that is precarious. But I will confess that oddly things keep working out. Money keeps popping up lately. Not enough to catch up to what I owe N, but maybe we will be moving forward this year staying in the green.
I look over at my mom these days, and I am so very happy she is here. I see the faraway looks in her eyes every now and then, and I suspect she is reflecting back on her memories of the life, friends and times she once knew. I can only imagine how it feels. My mom used to love to dress up, look pretty, and party. She liked pretty things around her too. Her home was surrounded by flowers early spring to late autumn. Christmas decorations went from the front yard through the house to the back yard. She wore long fur coats and long leather boots (sorry vegans and animal activists). She was a big flirt too. Even when she went for her early morning 5 AM walks with her neighbors, she put on her jewelry, makeup and matching workout clothes. Now my heart aches for her. Those memories must still be there. And I and N make sure she still looks cute.
I think about too the relief she must feel not being so very much alone. And I think about the sadness she must have felt at times when she realized how alone she was, how far away I was, how my cousins and relatives had their own lives in their own houses away from hers. I feel like too she must have recognized at some point that the only people willing to spend time with her were the people who sought to use her. They were far from the fancy people with whom she once hung out. They were unemployed and living like squatters in a home with boarded up windows, brown lawns, and furnished with what must have been street finds. They began to do laundry at her home since water was more than likely compromised at theirs and they probably simply didn’t have a washing machine or at least have one that worked. I think she knew what was going on, and some of that is what fed her need to be perpetually numb. When she tells me she feels more like herself these days, I think about how clear headed she has been allowed to be. She’s not over medicated or high. She’s sober, clear and present. She had to sink to some pretty ugly lows to have relationships back then. That’s kind of like those places some of us visited in our younger days that we're so very glad are behind us.
Over time, the hate I once felt has dissipated. It’s been replaced by compassion. I care again about the woman who lives with me. I care again about me. My mom often says she feels like herself again. I notice so do I.
This year having my mom in my care has not only created a change in my mom, I see the changes in me too.
So here is how living with a social butterfly (AKA my mom) is changing me:
1) I used to be such a hermit secluded within my home. Used to be I seldom if ever let people through my front door. It was not unusual for me to talk with guest right in the hallway outside my front door. And I'm not talking about for seconds, I am talking about 15 or 20 minutes out there.
But truthfully, I know what that habit came from. I developed that habit as a kid. Back in the day, if you came through my childhood doors there was a strong possibility you'd see somebody (on any given day, at any given hour) fall down drunk or trying to stagger to the door. When I was way too young, I had already learned to race to the door like the house was on fire in order to get there before a drunk family member. I especially had to get to the door first if it was one of my friends, doing my best to block their view or just rush outside to visit with them -- kind of like I was doing in my adult life.
Now, with my mom living with me, people come through my front door almost everyday.
2) For 20 years I lived isolated in my little one bedroom apartment. I've had two roommates: one for nearly five years; one for just about six months. My five year roommate and I were equal as hermits. My 6 month roommate/cousin called me a hoarder...yikes. When you don't have guests in 20 years, there's no need to make your home ready for company. I am not counting the occasional boyfriend or date in this equation. I was never really inspired by any of them to hook up my home. I was deeply becoming a hermit: my home was dark, my blinds stayed closed, very very few people entered who did not belong. In addition, I was embarrassed, too, by those friends who were clearly well off with fancy beautiful homes and things, beautiful families, or who in my head were always doing better at this thing called life than I was.
So my mom moved in, and I was abruptly and uncomfortably booted out of my comfort zone: my hermit's cave of an apartment. I needed my mom to feel like she was "home." She complained about not having friends here and I actually listened. So, I began to invite friends in my neighborhood over. I began to let them in my cave. I invited people I knew would be the kind of people she would get along well with, and she did. She just wanted to have company, to socialize, to engage with people in the home. It wasn't enough for her to go out to socialize. For her, that social world needed to include home, and I did it. I want to recover as much of her mental health as I can, if that's posible.
So as I landed outside of my comfort zone inviting folks I've known for years into my home for the first time ever, a strange thing happened: I wasn't judged. Yes, these were different friends. These weren't the fancy folks I knew. These were folks I related to already on a more personal note. These were folks I already felt comfortable with, folks I could relate. Then a reciprocal thing began to happen. These folks invited me into their homes. Turns out we were equal who were equally imperfect. We equally had our struggles on display in our homes.
With my mom here, I see that the energy and life that comes through my door regularly (the energy I used to say I hated) actually gives life to my mom. The same energy has even calmed my dog, brought my cat out of hiding, encouraged me to want to regularly welcome guests into my home, and as a result is helping me to shape my home into the type of home that is openly welcoming of guests. Suddenly my home here is like how open my childhood home was. While as a kid, I tried my best to keep folks out, my mom and step-dad always had folks over. They liked to entertain, to laugh, to socialize, to have a lively house. So today, I open my door differently. I no longer barge out into the hallway to greet folks, I stand back so they can say hello to my mom if they want.
3) The days leading up to New Years Day I purged my bedroom. That entire weekend I shut myself up in my bedroom and purged tossing out bags and bags of stuff and things. I rearranged my furniture too into a more functional set up.
There's a brightness now and even a functionality to its flow. I like being in there again after so many years. Actually I am falling back in love with my entire space. My mom entered my room since my purge and simply said WOW. To be honest I'm not done. I even purged my closet and drawers. After 20 years, there really is a lot to bravely let go of. But it feels like my room is shaping into a welcoming space. A space where guests can gather too (like some seem to do). And I WANT to have guests.
I look forward to continuing my purge, to creating space for a positive energy to move about freely. After my room, I will purge my mom's closet, the kitchen cabinets, the hallway between my room and the front door, then I must bravely empty my bookshelves of at least 50% of their contents. It feels like a new life has awoken within me. Oh, and something has happened since I have freed up this space in my bedroom. I'm not exhausted all the time. I mean before I used to always feel tired. I slept a lot for years. Since my room has been freed from stuff, the space is clearer and organized, I love looking at it and I am not tired as much. It's almost as if the old clutter suffocated my energy.
4) I am becoming better with my budget, or at least acknowledging that one must exist and that I must be better about it. I lived so selfishly before. I am not saying that to be judgmental. I am trying to say I was only responsible for me so I thought only of me, but I also only thought in the right now and the immediate. I don't mean I was living in the zen of the moment being fully present. I was without clear focus or a plan. I functioned haphazardly, which is another way of saying I was broke all the time. Having my mom in my care and being responsible for her well-being, having a caretaker who we both adore, having friends and neighbors of my mom back home who continue to help out back home, has required a more deliberate structure my financial life.
So, I have finally, after 12 months of taking care of my mom, decided we will not end this month in the red. I have decided to be deliberate and intentional with my spending for us. Which means, not just buying something spontaneously but planning for it. I have even included my mom in this goal. Letting her know repeatedly when our money is at its leanest. And this time as we enter the month, I put some money aside to be used when we dip into red territory to hopefully pull us back up into the green. Yes, this does mean I am robbing Peter to pay Paul. But I am more determined to keep us out of the red, to put us in the green and to get us moving up in the green from here on out.
What is my new year's resolution?
I have already been asked this question a few times. and I don't have the type of answer I used to have. So I will just write what I've been thinking. Actually it's a word: Action. I keep flashing on the word action every since I felt moved to purge my room, to write a short scene to read with a scene partner from my acting class, to cancel my gym membership, to put on my favorite music in my fabulous room and move my body. I think my new year's resolution is to take action, to do something, and to be consistent, intentional and deliberate with it. What I like about this is that it is a singular focus, and that it is a focus. As I sat on the ride home tonight from work, I wrote out a few actions to take this evening. One was completing this post tonight. I began it on January 4th, but never reviewed it to post. Well, it is now 1:14 AM and I am finally completing it to post. I actually completed it earlier but of course that draft did not save. I almost went to bed promising myself I would do it in the morning, but I decided to keep to my action for the night. Yeah, so my new resolution (I deliberately left out year because I think I want this to be for life)...so my new life resolution is to take consistent, intentional and deliberate action for each day's tasks so that I may chip away at what I visualize.
By the way, I was looking for before and after pictures of my room to post, but I never took before pictures. I guess that was the hermit in me who preferred to stay invisible. So I will put here one of my favorite memes that I think best summarizes my new experiences:
One year ago today, December 23, 2017, at this time, 8:28 AM, I was exhausted and running around deep cleaning-ish my home before my mom arrived to spend her first ever Christmas at my home instead of me going back to my childhood home.
Today, I think back on how it has turned out and the Blessings that would be revealed.
1) I never wanted to move back to my hometown. I fell in love with my current city and did not want to leave. My mom's visit, the 2nd one in 4 months, revealed the danger she was in. It took a while for me to really understand what I was witnessing but it finally occurred to me 4 days after she arrived that living on her own in that house was dangerous to her life in many ways. So I cancelled her flight, and threw away her suitcase.
2) Over the following days I would begin to witness her inability to take all medications safely, in a timely manner, and responsibly. Once I took complete control over her medications, including her over-the-counter drugs, I would notice a transformation taking place. Then finally looking back at those first photos I would come to understand how over medicated she had been when she first arrived.
3) Back home she would often have a refrigerator full of take home boxes of food brought home from days out playing bridge or someone sending her food. Since she has lived with me, I have learned that I have to stay on top of those containers and even feed the food to her at various meals and in small portions. She continues to bring food home daily from the various senior centers and swears I don't have to cook for her because she has that food, but, if I don't stay on top of it all, the food spoils and molds. I have caught her eating the obviously green fuzzy molded food. She doesn't even know it or recognize it. I would grab it from her hands and toss it away. She would be nonplussed. I'd have to fry a quick egg, heat some veggies, or pop a sweet potato in the microwave. I can't help but to think how much spoiled food she'd eaten over the years especially since 2010 after she had a serious accident. In addition, there were mouse droppings in her cabinets back home and in her bed back home (where she ate so many cookies and crackers). I hate to think about the amount of expired food and mouse excrement/fur/dandruff she must have consumed.
4) We fought a lot, and I mean a lot, in those first 6 months when I refused to let her go back home. Truthfully at that time I wasn't sure what to do. Even though weeks and months were passing by, I didn't really know that it was my intention to never send her back home. I think I thought I could help her get better then she could go back home. I remember too then catching her secretly crying on occasions when she thought she was all alone. I felt her sadness at: growing old, losing control, loneliness, loss of friends (from death or from want of avoiding her--her behavior had become a problem thus I spend 2/3rds of our income for a caretaker to be with her 5 days a week). In the beginning of 2018, she used to swear all she needed back home was a housemate and she would be fine. But I, and her caretaker, would notice the huge shifts in her personality and behavior on days I kept to myself spending no time with her (just staying in my bedroom feet away from her now bedroom/living room). It takes a strange toll on her. I absolutely must or someone must spend some time with her when she is home or she will act out the next day like a child determined to get her way by being nasty or bullying other children. (I have now employed wireless headphones when I just can't take another marathon session of Family Feud or some game show or when I just want quiet.) She wears the headphones. I read, or work on my computer, do nothing at all, or even nap. She likes this arrangement, and so do I.
5) We are getting to know each other again. I moved out of my childhood home nearly 30 years ago now (11/30/1990). Each time I would go home to visit, I had the advantage of being back in a fairly familiar place with familiar-ish locations. I could then identify the changes to those places as compared to my memory of them. As for my memory, my mom fit perfectly in those memories so it was fairly easy for me to recognize changes in her while still recognizing her. But I could see on her face how it was growing harder to recognize me. I was growing older, fatter, slimmer, wearing wigs, extensions, hair long, short, permed, or natural. In the time that she has been here, that has changed. She now expects me to make a regular appearance in her day. She regularly recognizes me. If I am late returning home, she calls me. When she lived back home, I would be the one to call her if something devastating happened in the town I lived. She would either never have heard of what happened, or if she did she would often say I figured you were alright. (One such event, where a guy intentionally drove a vehicle over people on the sidewalk killing several, I only missed being there at that exact time because my train slowed down in the subway making me not be in that very spot by a couple of minutes. I arrived literally right after he drove past the spot over several people.) This made me aware of the distance my mother and I had drifted apart.
6) She had predators who were lying to her, deceiving her, had begun stealing money from her and they were the only ones willing to regularly spend time with her because they had something to gain, but she, sadly, believed they loved her. They brought their habits, their stuff into the house and if she had not ended up here they would have soon moved in. They were close to owning her. I overheard a conversation she had with one. This was days after she realized she would not be going back home like she was supposed to. The woman was telling my mom how my mom probably wishes she had never come here, how if she knew I was going to keep her here that she never would have come. The woman would call my mom at all hours of the night even after midnight. If I picked up, she would hang up and call back. She would call my mom Mom and say I love you after each call. My mom was always sneaky with the calls going into another room to talk (hell yeah I quietly followed and stayed in ear shot every damn time and because she is hard of hearing the phone volume is always up so loud that I could easiy hear the entire conversation). In retrospect, of course, I think back to when she was on the phone with the guy once back in her house when he asked her to take him off speaker. Because she is hard of hearing, she mostly had the phone on speaker. By the end of January beginning of February, I changed her phone number and got rid of their numbers from her phone book. My cousin would later tell me how the woman would leave a bunch of messages on the machine back home calling for months. I had her services on "holiday mode" until September of this year. I was never quite sure what to do but I knew she couldn't go back home. Those folks had already gotten ahold of her debit card twice taking out $800 until the bank stopped the card then started again with a newer card until the bank stopped that card. They didn't care that she was eating rotten food or over medicated most of the time. They smoked, drank, and hung out in her house and even began to sell weed from her house. Thank God she ended up here because if we were still back there would I have been able to stop what was building up when no one else could? They would pick her up at all hours of the night. For what? That part I may never learn. Living here I have the door secured at night so that she doesn't wander out in the middle of the night. How could I secure that house at night or when exhausted? How could I stop them when they dropped by with their folks at whatever hours? I would have been way over my head in so many ways, period.
7) I recently found a video on YouTube that showed me who my mom was: https://youtu.be/BvoRzbXK-vk (See below). I am so grateful she ended up visiting me for Christmas last year so that things could turn out the way they did. I am so grateful circumstances caused her, some part of her, to want to leave home and come here. I truly think, believe, some part of her wanted it to turn out exactly as it did with me making her live with me. I sort of feel like she was hopping I would. There's an odd mix of pride I detect as she tells people I have complete control of everything. I also recognize in the conversations with some other elderly folks a sort of wishing that they had what she has. It's like she/they want it and don't want it at the same time. I heard it in the conversation with my uncle the other day who is currently in assisted living. He said people die there regularly because they're old, sick and alone. He told me I should consider something similar for my mom. Our situation is not easy but right now it is good for the both of us. I like having her here. I can see to it that she is safe and happy. Yes, it is hard but it is not impossible.
This apartment is easier to care for than her house but I recognize the benefits of a house. In October my mom finally came to the conclusion she would sell her house and live here with me. This was a huge step for her. I had considered as much back in the spring, talked it over with a few folks but fortunately it was my mom who made the decision without any input from me. Her own independent decision.
I took this picture a few weeks ago. I, like a naive little idiot, believed it would be the last time I met this person. See, I don't know this person. This person is a straight up con artist. This particular person is a player of people, a slick manipulator of people. Really she is a manipulator of my friends. And I hate it. I
With every one of my friends she calls, trying desperately to get them to do her bidding, she inserts, don't tell my daughter, in there in which case every single one of them tells me. I'm like, ma, I've been friends with these folks for over 20 years. They're just meeting you. If there's an issue of trust here, they know me. They don't know you. And she continues to try.
I am losing it. I am losing this battle. I am over my head. I can't do this shit. It irks me. These games irk the shit out of me. I hear her put on the act. She shifts gears and quickly becomes this little ol' helpless lady begging for someone to do something for her. Really, to get her some pain killers...either over the counter or wink wink. Ugh!!!!!!
My friends get got too the first time she pulls this oh woe is me shit on them. But the next time, her acting, manipulating, conning skills take a quick nose dive. She sucks after that. They are all quickly on to her scheming. They tell me too they knew the first time, but it's just once so they are like fine, just this one time. But she is like Oh, I got them...'bout to get me some whatever the hell she's fiending for. Ugh!!!!
Who the hell is this woman? I did not grow up with this person. The one I grew up with had a drinking problem when I was a youngster. Then again it seemed like back in the damn day every grown-up I knew had some damn drinking problem. And they all used to drive drunk as hell. Be all up on the front lawn and shit. We didn't even wear seatbelts back then. Be in the car with they drunk ass scared as shit. But, by the time I was a young teen, she stepped away from drinking...right after I got a black eye. My black eye then scared her straight. She stayed sober for thirty years.
I don't think I've unloaded as many swear words in this blog before, but I am right now just effin' over this shit. She's out with her caretaker right now who already told me my mom was planning the next scheme but I had already warned the caretaker about it. Ugh!!!!!
She really is going for it. I think it may have a lot to do with all the changes going on in her life. Her pain killer shit keeps her nice and numb in the brain, and that is what I think she wants. I don't think she really wants to feel totally sober right now. She went through that shit my friend gave her this Friday like I hit the damn Mega Millions or PowerBall. But money is tight as shit, and I mean tight as shit. Come December 23rd, she will have lived with me for an entire year. She does not have access to the folks back home she used to scheme with, the folks ten years younger than I that she hung out with, smoking and carrying on, thinking they're her friends when we all knew they were taking advantage of that 83 year old woman. Having hundreds of dollars stolen from her bank account via her debt card more than once, "losing" her debit card every other month, literally.
She was left home alone in all that mess. The only kinds of relationships she could keep after a while was with cons who had free and easy access to a little eighty something year old lonely and living all by herself woman. And they played her good calling her ma, telling her I love you, telling her, if you knew your daughter was gonna keep you there bet you never would've went there. My mom saying, "I know that's right." That's when I broke that shit (that phone) and got a new phone number.
The shit is splashing on the ceiling right now. Her emotions are big, her anxiety is large, and my home is the den of satan. Demons up in this mug effin with my mom and effin' with my living nerves. This too shall pass. I know this. For every scheme she tries to pull that shit comes right up to me and announces itself. No matter what time I'm walking down the street, sitting on the train, doing whatever, I keep walking right up to her schemes announcing themselves to me, every effin' time. And not one of my friends want to be in the midst of her shit. Thank God for that. I got some good patient understanding people in my life right about now. She's lucky as hell we never hit any lottery, because after the shit she's been putting me through now on a regular daily effin' basis, a nursing home would have been in her IMMEDIATE future. But lucky for her, we can't afford that shit right now, so I just have to keep on keeping on and venting either on the volleyball court or right here on this blog. Ugh!!!!!!!!!!!
And this is just me venting....that's why I have this blog...to vent.
November 4, 2018
We finally made it back to church since July. My mom was well behaved. I didn't have to sit on her hands or ask her to stop playing. She was really good.
So, a few weekends ago, was rocky. She had been screaming at the top of her lungs and pounding on my bedroom door Friday night into Saturday morning. She wanted stuff for her "pain." This thing she calls pain is suspicious. I am no expert, but after years of medical testing, and coming back with suggestions for alternative methods to deal with it, I suspect her "pain" to be more closely linked to anxiety and panic attacks. They're just familiar to me. I've been down the road of anxiety and panic attacks. That shit be making you think you dying and shit!!!
After her constant pounding, and wailing, and performances she put on for whoever answered their phone (but of course could never talk long because they all know her as well as I do by now), I could not take it any longer. I walked out of the apartment Saturday afternoon, went to a play (had a comp ticket), arrived late, and fell asleep. I was wiped out physically and emotionally.
What to do when I get home?
I was getting edgy and panicky. I did not want to reenter this troubling environment, my home. Then it hit me. I wrote a letter.
You are so right. I don't know your kind of pain. I am not a professional. I don't know what I'm doing. I'm over my head. Therefore, I throw in the towel and hand you over to the professionals who are trained and better equipped to help you. This weekend I am sending you to a nursing home. You will have the 24 hour care you need. We don't have much money and this is very last minute, but with our budget I can get you a bed in a shared space. I am sorry for having put you through so much for so long and for not understanding your pain.
I actually had reached out to a few facilities. It began to hit me that maybe this is all true and I can't handle this; that I may truly be over my head.
When you reach out to these places that ask for a contact number. This time I gave them hers.
I came home and gave her the note. She read it, and suddenly she was feeling much better. Her pain had magically left her. She claims it was the pain pill I gave her, and that because I was late giving it to her she was in that much more pain. The pain pill is a vitamin D3. She doesn't know that. I never told her that for months I had been giving her that instead of actual pain meds.
Her phone had been ringing. It was them.
Did you give my number to a nursing home?
Oh, the drama was not done. There was to be a part 2 to this miniseries. I overheard her on one of those calls telling them how cruel I was to keep every thing from her, to keep her locked up in this room (my one bedroom apartment), and never letting her go anywhere (except to play bridge -- she somehow managed to say). By the conclusion of the call I heard her telling the person she didn't want to go to their facility. Noooo. I'm going to stay her with my daughter.
After some time, I rushed into her room telling her I got a call from a detective investigating a case of elder abuse and that he was allowing me to walk myself over to the precinct to turn myself in. I told her Adult Protective Services were coming to pick her up for her safety.
You aparently told some lady I was abusing you and she called the police. Adult Proctective Services are coming to save you. Get dressed.
Here I packed her suitcase and put it by the front door. She quickly put on the clothes I handed her, sweats.
I have to go.
I'm not going anywhere!!! She demanded.
Ma, you told people I am here abusing you. They're coming to save you. I have to go to the precinct. The super has my apartment key and he will let the people in to save you.
I don't want to go. I'm staying here.
Then you should not have told that lady I was abusing you.
I didn't say that.
Well, then you need to think before you say such things. Bye. They'll be here sometime this afternoon.
I left and went to spend time with my friend in hospice care.
Later, I came home to find my mom wide awake, in her sweats, television off, looking worried. Her suitcase now in her room wide open.
No one came?
No one came.
Well, let me walk you down to the shelter. They want to make sure you're safe.
I don't want to go to the shelter.
I hear you but you got folks worried about you, so let's go.
Finally ... Okay.
Then I said, I could take you in the morning. We could just get some rest for now.
Yes. Let's go tomorrow.
Later she came to my room asking if she could just stay for a month because then I'd see how much better she is in behaving. Just one month.
You think I should give you another chance?
Okay. But it won't be one month. It will be day to day. I told you. I'm over my head. This is above what I know how to do. So if things get out of hand like they did this weekend then you will definitely have to go to a nursing home.
I'll go to my brothers, or S or D's place.
B, have you noticed that in all this time no one has offered to let you come stay with them despite all the things you have said about me? It's because no one wants this. This is above all of our heads and your behavior is too much. I won't deal with it. And not one other family member will step in and deal with it. I know you know this because as much as you have begged them all in the past, no one has said for you to come live with them.
She has been so much nicer since then, and miraculously her pain has been manageable with the vitamins disguised as pain meds.
This Sunday we went to church. I told her I will no longer make going to church a job for me. If she wants to go, just like she gets herself up to go play bridge, she will have to do the same on Sundays. So this Sunday she got up, watched Joel Osteen, bathed, and put on her undergarments and waited for 9:30. Then got up and fully dressed. She was so good in church too. She was so good that in fact she surprised me by walking up to the alter to join the church.
Forgive me for saying this, but there is a part of me that knows the con artist is still there behind the eyes playing me. Her behavior is so adept at playing people, but if the con wants to play me by behaving better, joining church, being more well-mannered with others, eating a healthier diet, exercising, and such...I'll take it. She still acts out on occasion but she is quick to behave. It's these things that makes me see the child that has surfaced. A child that has learned some very bad habits, and will do what's right if only to buy time, relationships and companionship.
This is going to sound creepy-ish and probably out in left field but here goes: there is negative energy associated with the house I grew up in. But the energy or entity is somehow malleable. That is it can be either bad or sometimes good. Yes, things have happened that were oftentimes unexplainable. But as my mother lived more and more in that house alone, I sensed the energy shifting to something ugly and destructive, and she had become its playground. So as she looked at me in church this Sunday, before she grabbed my hand to walk her down to the alter so that she could join, I felt like there was something else just behind her eyes. It briefly made me think of that something from my childhood home. But like at home, I recognized it and walked with it down to the alter. Really because I felt the presence of the two energies. I felt too it recognized that I recognized it as I looked it in the eyes. Crazy stuff...I know. But if I am to be won over by some unknown energy willing to be better at being a better person, then I am willing to travel this lane.
Days of Truth
Since Sunday I have come forward with the truth to my mom. I told her the woman who comes over 5 sometimes 6 days a week to take her to bridge, get her nails done, her hair done, take her to the public gardens is someone I hired. That this is the costliest of all of our expenses. That this is why we are so often without money to do things. That she is the second person I hired. That I actually had to fire the first lady.
My mom was shocked but relieved that I have finally included her in the truth. That so much did not make sense about our money but now she gets it. I told her the lady works 36 hours and sometimes more a week, and we pay her an hourly wage that is competitive so that she will stay with us. This is so very expensive. It is a huge percentage of the money we bring in each month, but I told my mom she needs it so that she can have a life. I also demonstrated for her how it really would be cheaper for us to have my mom go to a nursing home, but that she would never have the daily activities she has now, or the life she now has. She now gets it.
It's so far from perfect. She still says the wrong things at times, and is sometimes hurtful, but at least she will listen for now if only just to stay here and out of a nursing home. Oh, and she is actively trying to sell her home, my childhood home. So we've had some progress in understanding her life as she knows it is changed. Her residence is changed. Her state of residence is changed. Her home is changed. She now has a dog and a cat. It's taken us eleven months to get to where we are now, and I hear her quite often referring to my home as her home.
,My mom is fine. I'm fine. A friend is not.
Once upon a time I worked as a standardized patient (an actor) at Memorial Sloan Kettering Cancer Center. The job of the program at MSKCC was to teach empathy skills to all staff and medical personel with dealings with patients and their family. In some scenarios, there were those times when people (patients, their family and friends) were told there is nothing more medicine can do other than treat any pain and keep the patient comfortable until the end came. But the end was expected to come.
I did this job for about 2 years. It was illuminating in terms of making me wish more personel would emphasize the necessity for empathy with patients and their family and even friends. Too many of us have had experiences with those who work in health care and lack any semblance of empathy.
My friend is, today, in a hospice attached to a hospital in the Bronx, NY, and is receiving palliative care. The people are amazing. There was no check in, find my friend's name, give me some hideous sticker to attached to my clothing that may or may not fully come off. My first day there, walking through the metal detector (sign of the times), the police officer pointed the way to hospice care. Following his directions, after the third turn, a nurse walking down the hallway, pointed to my next turn at which point I'd take the elevator from there. Once off the elevator, a cleaning lady asked me who I was there to see and pointed out his room. At which point, a nurse walked in introduced himself to me, told me it was okay to sit closer to my friend asleep while getting his respiratory treatment. Another nurse would walk in later to introduce herself to me and told me to let me know if I needed anything.
I'm just a friend of his. I'm not family.
It's nice of you to visit him. Let me know if you need anything.
What can I say about my new experience. As an actress, digging deep into my imagination to imagine what it might be like, and pulling up those ideas and emotions, it was scary as all hell. Today, it's not so scary. I don't know if it's because my imaginative experience prepared me, I'm older now and have had other life experiences that prepared me, or the warmth I experience at the hospice within the hospital. Or maybe it's all of the above. My friend has come to understand he is really sick. His lungs are quickly failing him and have begun to exhaust his heart. His brain is alert and he is fully aware of his circumstances. That part is a bit scary. But I learned that one of the medicines he is given makes him sleep a good bit, and that one day he will go to sleep and will not reawaken.
I am not sharing this to gain sympathy, but to say thank you to those men and women who so faithly and lovingly worked in palliative care. The nurse I talked to this week told me she had worked in palliative care for 8 years. How amazing is that. A part of me, a tiny little part who seems to be herself fading away, thought how could you do work for so long with people who are dying. But then a new part of me arose saying death is inevitable, and for those who are dying, let them have the best life possilbe while they live. That seemed to be the mantra there at hospice care. At the hospice care the patients can have what they want, and it is given with love.
Thank you to those doctors, nurses, palliative care teams, and hospice staff who make the environment so warm for the patient, their family and their friends.