First, this is another one of those blogs where, on my end, I have literally rewritten this entry (topic and all) at least 20 times. The original draft date for this post is January 3, 2020. A lot has clearly happened since then.
So, this Coronavirus, damn!
I’m in NYC so, yeah, shit is serious here. But nursing homes, double damn!!
First, backing up - Context - You know.
Ya’ll during those first months in 2018 that I had my mom in my care, that shit was hard as hell. Ain’t no other way to say it. I was angry all the damn time.
She arrived that December 2017, for a holiday visit, but by January I knew I couldn’t send her right back home. By April I didn’t know what the f*** to do or how to do it. I didn’t know how to take care of this human being who came with so many medicine pills, who was confused as hell, who hated being here almost as much as I hated having to have her here, who’s being here shrunk my comfy one bedroom apartment, who’s personal care and well-being became my full-time job on top of my full-time job, who according to multiple social workers qualified for zero assistance with care because she “made too much,” but who knew that my mom didn’t actually “make too much.”
She desperately wanted to go back to Detroit. At first I thought I was getting her healed up enough so that she could go back to living in her house by herself. But “healed up enough” never came. So by April, I reached out to “A Place for Mom” in Michigan just outside Detroit. I had begun the search for an assisted living residence. I listened to folks, and observed for myself, that there was probably never ever going to be another time when she would be healthy enough to live on her own in her house. I made the search almost exclusively in the Detroit area because she insisted on going back there since all of her friends lived there.
The prices weren’t too bad until I started tossing in amenities like: medicine distribution 4x a day, laundry service, apartment cleaning service, access to leave the campus daily, oh, and memory care. With those “amenities” the monthly fees began to add up.
Then we (her friends, family and I) had to talk about my mom’s new ways. My mom had ways of disappearing in Detroit. She had friends of no good intentions who took advantage of the little old lady whose purse was never fully zippered closed so that the money she just took out of the ATM (usually no less than $400 to last the month) constantly fell out of her pursel; a little old lady high from taking her medication improperly and taking over-the-counter pain pills like they were TicTacs whose purse fell over onto the ground, as she constantly dosed off, dropping out even her ATM card and identification onto the floor of the car, living room, kitchen, den, grass in the back yard, front yard, wherever. More than twice these friends took her ATM card for a spin, taking $800 from her bank account one time and several hundred another time. She was embarrassed that we knew but swore these folks were her friends.
I overheard a conversation with one when she was first here and I had canceled her flight. This woman called herself my mom’s daughter, said all the right amounts of I love yous, and more than once said to my mom, “I bet if you knew she was gonna keep you there, you never would’ve gone.” To which my mother answered, “You got that right.”
I had many a times thought about shipping her right back off to those vultures. I had even told her that if she wanted to go back home so badly, ask them to come get her and bring her back. She never asked them.
Representatives from assisted living facilities kept calling
But still I looked into assisted living facilities. But in New York state the price per month quadruples in comparison to Michigan. New Jersey too is much higher than Michigan. Michigan’s prices are realistic. So she stayed here, in my cozy one bedroom apartment, until I could figure out what to do.
On bad days those calls had me seriously questioning why I was having my mother live here with me.
Eleven months into this new arrangement and the living room finally began to transform into a bedroom. I finally traded out the sofa I had her sleeping on with a daybed. It’s crazy how long it took me to actually make that switch since the sofa’s pillows always slid towards the floor so that I constantly had to push them back into place so that my mother didn’t slide off to the floor. By March 2019, I finally ordered a couple of dressers, and got rid of the love seat, putting in a sofa chair, ottoman and nightstand. By early spring the living room became a cute bedroom/studio apartment.
By October 2019, I told the representatives I am keeping her here. I was exhausted, burned out, angry, overwhelmed, neglecting myself, but it occurred to me that my mom would not be able to go to all of the different senior centers that she goes to daily if she was in a facility. That she would lose the little bit of independence she has left.
Around the same time, at one of my mom’s doctor visits, the doctor had a talk with me while my mom sat there. My mom was unable to hear the conversation because she had broken her hearing aid -- again. The doctor told me about how she took care of her father for five years and the toll it took on her. She talked to me about truthfully considering putting my mom in an assisted living facility. I told her how I like how my mom had a semblance of independence while living with me. The doctor asked me to weigh that against the cost to my own well-being.
And of all days, after this doctor’s visit, Access A Ride was 2 and ½ hours late picking us up from this doctor’s office. My mom was the last patient. The doctor kindly let us wait in the office until our ride arrived. That night instead of getting home at 7PM we got home just before 10 PM. We were hungry and tired. I made us dinner, fed her, fed me, cleaned up, gave her nighttime meds, picked out her clothes for the next day, turned off her television (she plays it so loudly when her hearing aids are broken or lost), settled her in for the night, then put myself to bed. Then got her up early the next morning for her day’s activities, put her in the shower, got her safely out of the shower (I finally bought a shower chair), fed her breakfast, fed my dog and cat breakfast, walked my dog, and saw my mom off, and went to work.
I still see that day, across the desk from the doctor, and think about what we talked about.
Without saying it, I know family members have been waiting to see how long it would take me to put my mom in such a facility. It wouldn't surprise me if they secretly placed bets. One family member told me I should do it. Of course this again was out of concern for my own well-being. I confess I never ever knew how challenging it would be to take care of another human being. For example, on a night in which I was to be picked up at 4:30 AM for a job, my mom pounded on my bedroom door, waking me up because she couldn’t find her remote control. That was at 1:30 AM. I confessed to a neighbor just yesterday that I have all of my mom’s doctors all lined up in order but none (except for dental) for myself.
One uncle is in an assisted living facility. It’s in full lock down. Prior to this pandemic he had already experienced a severe depression period. Severe enough for me to send my mom to Louisiana to meet up with her other siblings and nieces to go check on him. He was fine. He had just experienced a period of continued loss. So many of his friends in the residence had passed away. So many that it became too much for him. This was a year ago.
The Governor of NY does his daily briefings on the well-being of this state giving the numbers for: those newly positive, those newly admitted into hospitals, and those who have permanently left us. The latter includes nursing homes.
Today I am so grateful I struggled through the muckety muck to keep my mom here. This shit is still hard as hell, but nothing compared to what families are experiencing who today have relatives in these residences, and to what the residents themselves must be experiencing.
Just this week a friend of hers thanked me for taking my mom into my care, saying not many would do that. Well, in my thoughts, I was exactly like those "not many." I struggled and still struggle with being a caregiver to my elderly parent. I can't say it enought, this shit is hard as hell. But I have to thank the astronomical cost of assisted living facilities here in the NY state region. Because the prices are out of this world, my mom had to stay with me. The cost kept me out then, and the cost today, due to coronavirus, will keep me out going forward.
I’ve lived with my circumstances long enough now to have adopted a new habit of waiting before I post. Sometimes, I admit, my writings are therapeutic ventings, and after a few days, or sometimes just a few hours, the vent putters out, the steam is gone then I keep those to myself.
This post is connected to that which I’ve posted before and all about how angry I am a lot of the time.
This self reflection is inspired by a friend’s recent sharing of a quote on Facebook. I won’t go back and look up the quote. I'll just paraphrase the gist of it: Love and honor your parents.
I read through the comments on my friend’s thread and came across a mutual friend who wrote about the guilt she experiences because sometimes she's short with her elderly parent, and sometimes she's mean.
I often feel this overwhelming guilt when dealing with my own anger and seriously inappropriate words spoken to my mom, the one I'm to honor.
Several days after having read the post on my friend’s Facebook page this is still on my mind. I wrote a venting blog January 8. I was hot with anger, and the stuff coming out of my mouth was clearly laced with venom. Then it occurred to me today how while I'm in this new position in my life I now have to set the rules and boundaries in my own home. The roles are for real reversed. And as I watched my mom’s behavior and actions this morning, as I corrected what I considered highly inappropriate for my home, I realized I have to utilize all of these different approaches to get my mom to follow my rules. Then I thought about this need for me to set rules, and concluded that my mom and I are so different that I am not willing to compromise. As for some of her ways, I am in complete disagreement. I’ll tell you 'bout them rules in a minute.
My setting boundaries and having rules requires a consistency from me that can come off as mean, and my mom is really like a child who tests, constantly tests, these boundaries and my responses to these tests of hers.
I’ve begun to see her respecting these boundaries, not automatically always, but more often.
Observing myself in all this, I’ve come to the conclusion that I am not comfortable with being the bad guy, and, unfortunately, I am better at being the bad guy than I'm comfortable with. AND that bad guy thingy sticks on me and I sometimes catch myself carrying it with me everywhere I go.
So, Ugly Bugaboo, what are your rules?
There are more, of course. And addressing these issues often has me not being my nicest, and I don’t like that.
But as she readied herself for going to play bridge this morning, as she reluctantly admitted she was hiding potato chips in her coat pocket, I saw all this: my consistently, regularly, routinely having to play the bad guy by any means necessary. I got a glimpse, that flew by ever so quickly, that the foul language I sometimes use is the only way I can get my seriousness through to her at that moment. My consistency with taking on the role of bad guy underlines the seriousness.
This is hard because it makes me have to do things and behave in ways I ain’t comfortable with. I see too that sometimes she misbehaves intentionally in order to illicit a response from me, negative or otherwise. For her at time any response is attention or company even. At those times, when I spy it (this want of irritating me), I’ve learned to just turn and walk away without explanation.
When I look at my mom, I am sometimes reminded how scary it is to grow older, and how much we have to surrender. I am reminded too how different we all are. My mom was a player who LOVED to party, who LOVED to get all dolled up to go out; she had a real good time most of her life; she wasn’t from the streets but she was sure enough attracted to the smarts needed to function and survive on the streets; she loved people who had the street in them (and she still loves them). She tries to bring that mindset into my home. I’m not from the streets either, but I’ve been well trained by my mom and some of the people she brought into my life. There is a charm that is in the streets, but my mom has not taking on the ways of those who are charming (well a little bit) but the ways of the schemers and hustlers. But lucky for me, my mom sucks at her own games.
So just because, in this calm space I’m in right now with my mom out the apartment with her caregiver, I recognize I am the bad cop, the bad guy, in our living arrangement, it doesn’t make it any easier being that. But as I see her being more childlike than independent, I see that comfort, that almost relaxing of the shoulders (metaphorically speaking) that I have witnessed in children before when they see you are a person who has these boundaries that are not expandable.
I once rented a room in a place where I lived with a young person whose parents had, to some degree, emancipated them. This young person was a teenager at the time. Once they came home late at night with another friend of the same age (about 17) and a mid-twenties year old person. The vicious guard dog in me snapped into action. The person they came home with was just a few years younger than I was. Even though I was the rentee, I kicked the older person out. I don’t know what I looked like or what I was doing to make me so effective but the older person was quick to go. The friend with my “roommate” angrily turned to follow saying things about me under their breath, but not threatening at all, and demanding that my “roommate” follow. My roommate did. But little did my roommate know that the subtle shifts in posture told a different story and communicated a resounding, Thank You.
I get so angry around here sometimes, and tired too (mentally and emotionally so), but in the nucleus of the molecules floating around here is that same communication, Thank You.
This morning I walked out of the door of my apartment building angry, but maybe it was more frustration.
My mother walked me to the door as I left and I reluctantly offered both cheeks for a goodbye kiss. My anger hot.
I marched down the street toward the train half tuned in to the world around me. Seeing a neighbor outside having breakfast and reading the paper, I tuned in enough to say good morning and fake a sad smile. Fortunately that question that often follows a hello was never uttered: “How’re you doing?” Because if it had been uttered at that exact moment, I fear I would have spontaneously combusted. It might’ve obliterated me right then.
I continued my march angry at the growing changes in my mom, and at having been pulled into this world of helplessness.
As I reached the corner, an SUV in a hurry, probably a driver late for work, raced to the corner anxious to make the turn.
Then the world slowed down
I watched a white pigeon anxiously try to free itself from beneath that SUV. It wasn’t pinned, yet, by the wheels. It was just in an unfamiliar territory suddenly beneath something when it was just above. Usually I see drivers slow at this point which allows the animal to free itself, but this driver was in a hurry, either oblivious or not concerned. Either way the SUV greedily moved on drinking the life up beneath it. Then there was a loud pop like a plastic bubble bursting, but in this case it was more likely the ribs and skull of the white pigeon crushing. The bird was instantly stilled.
That was not my first time witnessing an animal rapidly crushed beneath the wheels of a vehicle — transitioning from alive to dead right before me. But it surely puts so much in perspective. It makes me rethink this thing called hurry and reflect upon it’s consequences. It puts me in a reflective state of mind. It lessons some worries. It takes away the power of that invisible “something” that has its tentacles on me squeezing and suffocating me.
That POP still echoes in my ears and my bones and some other place both familiar and mysterious.
I continued my march and prayed for the white pigeon. I prayed its spirit was instantly embraced, its head smothered in kisses, it was lifted to whatever sky lies far above the above that we see, and it was released to fly as wildly and freely as its heart desired.
I am praying too that I “pop” through this frustration and this anger that has been feasting on me: my health, my body, my hope, my joy, my laughter. I pray that its fetters shatter. I pray the ghosts and haunts of these emotions become visible so I may see them hiding in the corners of rooms, or blocking my way as I move through space, or taking up my space and stealing my peace.
Oddly, at the moment of that POP, that transition, and the walk after, and the rest of my day, I expected to be thinking about my mom. I expected to reflect upon her mortality and how she is “stuck” in death’s grip. I expected her to be on my mind.
Instead, it has been the bird, and its final moments, it’s death brought about partly by its struggle, it’s fight against the trap that confused and covered it. It occurred to me later this day that if the bird had not fought but remained still it would be alive. That it was its struggle that put it directly in the path of death. There’s a metaphor in there somewhere.
I heard that pop, felt it within and continued on my way to an audition and a rehearsal. That pop sent me on my way with a brief new perspective. For a brief moment it occurred to me that my fears are misplaced, as are many of my efforts and a great deal of my attention. It occurred to me that I have been distracted for far too long; that there truly is an “other” and it is not out of reach but right next to me and all around me.
Sometimes I spend time meditating. These days I fight for quieting the thoughts running through my head. I fight to stay suspended between the wake state and sleep. I use binaural sounds, meditative music, and/or guided meditation. But right now, I am oddly thankful for that mysterious energy that placed me right in the space of that pop; a pop that opened the portal between this world and that other right near me. That pop quickly silenced the world and put me in the space I struggle to visit these days. These days have been filled with a plethora of distractions, and disappointments, and sadness, and frustrations, and anxiety.
A white pigeon transitioned this morning just to the right of me, and in doing so gave me a gift of peace and silence (at least as long as that pop remains alive within me).
Tonight, when I retreat to my room, I’ll allow myself to listen to that pop, and let it quiet all that noise inside me.
It’s funny and ironic how much I have to teach my own mom. But the irony isn’t simply a reflection of the circle of life but this: as I speak the words of some lesson to her it’s as though some imaginary mirror rises up in front of me and I am in turn speaking them to me.
My mom routinely says (nowadays), “I don’t have friends here (in my town where she now lives).”
Today’s lesson was not my first time saying it but today she heard me (at least for now).
LESSON: IF YOU WANT TO HAVE FRIENDS, YOU HAVE TO BE A FRIEND.
Here are the ways you have not been a friend, mom:
So these harsh words and lessons came from me today to my mom, but they were also a reflection upon me.
Seeing the similarity might be a stretch, but I see it. Here it is:
As the second accessibility driver picked us up today, he spoke of music making his day go by better. Then he sang along loudly with the music coming from his phone (but it was good music). I knew my mom couldn’t hear him over the commotion of the vehicle and the other sounds, so it was just affecting me. Then a voice said let him have this moment. Be kind. So I did. Soon I let go and sang right along with him, loudly. I could sense it was making his day. For that moment, at that time, I felt okay. I let myself enjoy the music. I let him be right instead of my want to be right. I’ve been practicing this a lot. I have RIGHT-ITIS. I love being right and know er’thang. Jesus, save your girl. Before my whole ”be a friend” lecture to my mom, at that moment today it occurred to me that I could be a friend by practicing being friendly.
I also saw this lesson in me as more than just want friends be a friend, I saw it within me and my journey as a creative. There is a lot I want: to book that fabulous gig, to build a brand, to gain an audience, to be in demand, to build a series, to produce and direct again and again. The word BE is all over my wants lists: BE, BE, BE, girl, BE!!!!
As I sat at my mom’s feet as she made phone calls to old friends and new friends, I coached her on being a friend and not a burden. She was successful with most (sadly except for one). The folks on the other end of the line were happy to hear from her and happy she could hear them and that she listened. She succeeded today.
Now I sit here typing this and reflecting on myself.
THE SPARK THAT GOT MY MOM MOVING IN THE RIGHT DIRECTION TODAY.
You got to check in. Don’t check out.
Mom, for the last two months I have taken you to a lot of doctor appointments. And you are doing well. We caught that infection. Your neurologist says you’re doing better than before. You’re in the care of a great ophthalmologist for your only working eye. You’re up-to-date on your flu shot. We have your new walker prescription. You go to Tai Chi once a week. You have two new pain doctors. Your body is doing good. But your will is fading. You’re quickly checking out on the want to BE well, to live. And at this rate, you’ll get what you want probably as soon as Christmas. Your body will be healthy but your mind will go. You have to decide to check in or keep checking out.
Why did I say this?
On our way to Tai Chi this morning, she couldn’t remember a name of someone and began her regular monologue of this old bad memory of mine. I asked her about her brothers and sister, their children, the day of the week, when she plays bridge next, why are some days canceled at bridge this week. She answered all perfectly, then laughed. She realized then that her memory was actually pretty good.
So, I said, your “old bad memory” works. The lesson then was about attention and intention (geez, now I get what Wayne Dyer was talking about as I write this). My mom’s initial attention magnified the one thing she forgot then she quickly sank into metaphorical quicksand of anxiety and doom. And her intention was to accept this old memory that she says is BAD. For the time being, she got it.
Again, that mirror has shot up in front of me as I write now, and as I spoke then. I see me in all of this.
So now I am here wondering if my mom is actually here so I can take care of her, or is she here so I can take care of me?
I flinched. I hesitated. I froze. I doubted me. I gave in.
A dear friend asked me to stop writing this blog, to stop putting my business "out there." I get it. I know. I disagree with much of what I see that's shared. I see what this friend is talking about, but...
I am a writer. Been one since a young girl. Writing is my sanctuary, my safe place, my life preserver. Oh, I am aware that my writing ain't for e'rbody, so I'm good with that. But it's what I've always done since I got my first journal at 14 years old.
To my dear friend, should you read this, yes, I am addressing this to you, I have to write. For these reasons:
1) It keeps me from losing it, from snapping, from going to those dark places, from doing what I'm sure I will regret. It gives me power to fight those negative voices in my head.
2) It turns out it connects me to a community of others going through, or having gone through, what I am just now going through.
3) It's information that next person who finds themselves in this place can use or connect to.
How do I know some of these things? Well, while one person, who is perhaps afraid her own grown daughter will be inspired to also write, others, who have read this, have thanked me for sharing. I was initially doing this to save my own life, but now I get to be of service to others by sharing my experience, and being of service is my superhero power.
So what's going on now?
We are in the midst of yet another, the third since she's been in my care, urinary tract infection (UTI). But this time, no hospital stay. I caught it (ish) in time. So let me share with you how I caught it (ish).
We do use multiple urinary health supplements with D-Mannose and cranberry, but that infection still shows its ugly head. So how did I keep us out of a hospital stay this time? What made me urgently take her to the doctor, who sent us to the ER (she tested without evidence of sepsis so we were able to go home with antibiotics)?
The last paramedic who was in our apartment made a comment to his partner over my mom saying it "smelled like a UTI." I asked him what he meant. He said a UTI just has its smell. Now I get it. My mom soils the occassional incontinence pad, and the bathroom garbage can becomes full of them. But when the question of a UTI comes up the urine smell is strong. It is so strong in fact that I feel like no matter what I do I can't get rid of that urine smell. And even if she has not soiled another incontinence pad it is almost as though she herself smells like urine. Whenever she leaves the bathroom, the smell of urine stays with her and it's tangy and potent.
Then there is the behavior issue. I've since learned that as the infection enters the blood it travels to the brain where it affects the behavior. My mother's behavior always changes as the UTI's infection spreads. The day I made the appointment my mom was unusally aggressive towards another person, and when I tried to explain to her that what she did was inappropriate, she kept repeating, " ___said I could take it. ___said I could take it." That was odd and off. She was not letting go or even acknowledging that her aggression was wrong. Then as we road in the accessibility vehicle I glanced over at her in time to see her in like a fantasy moment. Her eyes were 90% closed, she was smiling to herself, nodding her head, and moving her lips as if talking to somebody. She did it twice. It was the second time that I simply wrote the nurse practitioner an email. She wrote me back right away telling me to bring her in the next day.
She tested positive for the infection.
I wonder how many people have perished from UTI's.
When I had to take my mom to the hospital via ambulance, her behavior was a dead give away. I never knew that UTI's, once the infection enters the bloodstream, changed a person's behavior so drastically. But once it gets to that point, it seems to be a rapid downhill spin. The person is going to drift completely inside, and their brain begins to shut down.
Of course I can't help but to think that if my mom lived alone how the hell could she catch this or any UTI? This time my mom came home from the ER under my care. It is up to me to make sure she gets the antibiotics every 12 hours. I have already seen her come back around so to speak. It's interesting to literally watch her morph into herself again. The scientist in me is intrigued.
So it has occurred to me to question how can this person, who is not quite herself, be expected to faithfully give herself her medication as prescribed, or even to get help. I smelled the potent tangy stench of urine and knew it was wrong. Could she or any person with the infection feasting within them identify the cues?
Now, having gone through three UTI's with my mom, I see how a person can perish from them. The infection enters the blood, attacks the kidneys and the brain, and the person is in a dangerous place. I also learned that more women than men get UTI's. I have since learned that it is imperative that we drink our water too, not just for weightloss or satiety, but for bladdar health also. Will water and supplements keep my mom free from UTI's? Probably not. She seems to be inclined to get them.
How am I doing?
I have been struggling to take care of myself. My weight is in a place it has never been before, and I can say that's not a happy place. For more than three weeks, I've been suffering from never ending acid reflux. So I've had to make changes. But I've been struggling making those changes while having to take care of my mom. Yes, taking care of a parent is stressful. So I've begun including her in those changes.
A nagging injury to my foot prevented me from doing the one thing I love the most, walking. The injury has stayed with me for months. My mood went down and my weight went way up.
Finally I remembered my high school days where an injury got in the way of my track training. My coach asked me to get to a pool. I don't remember if I did, but this time I looked for a gym with a pool. I joined the YMCA. I got a family membership for me and my mom. So now we have a new Saturday routine. We go to the Y. She does Tai Chi; I do me. Then we go out for lunch.
While I signed us up for the Y back in July, it has taken me this long to figure out a few things: 1) on the weekends, we can still use the accessibility service to take us to the gym, 2) I can get up and go to the gym before she begins her day, and 3) we don't have to stick to the limited schedule at the Y where we signed up. We can visit all of the Y's.
Today, I tried out a different Y to check out a class for Active Older Adults (AOA) to see if this was something my mom could do. This is what I learned: If you haven't exercised regularly, in a while, these classes are perfect for you, and they're kind of fun too.
After I participated in a couple of classes at this Y, I had another revelation: exercising in a group setting is like therapy. I had been just chugging along by myself on the equipment at our Y, but since I wanted to test if my mom could do these classes, I was reminded of the feeling of community that comes with being with others. I love community. I am a community person. Yeah I like to be alone, and it turns out I like to be in community too. The woman in front of me in the Zumba class was as clumbsy as I was, and I felt an instant bond. She and I were doing our clumbsy thing trying to keep up with the bouncy grooving young instructor and it was just so much damn fun.
Turns out I bonded with folks in both classes. Don't dismiss the AOA classes, is what I say to myself now. They are so much fun and you can really get something out of them.
I haven't learned how to fully find balance yet, but I am actively looking for it. I feel like I have partially succeeded at having more of it in my life and in more places...at least for now.
Doesn't she look adorable in this picture. I was able to send her off with N for a 4 day bridge tournament in Atlantic City, NJ. It was a nice breather. Although it felt like it took me the full four days to unwind. My personal schedule was still quite full so I didn't feel as much of a break that I had hoped for.
I haven't written in a minute and it has everything to do with guilt.
I feel guilty for…
...complaining about my mom and growing to dislike having to take care of her when a good number of my friends have lost their mom and/or dad and would love to spend just one more second with them even if it was just for an argument.
Then I discovered the guilt and anger abandon me when I selfishly...
Currently, my cat is in kidney failure and my mom is finding, in her new home, folks have begun to leave her alone, like they did in her old home, and this includes me. There are traits of my mom that are easy to like, but unfortunately there are more traits that push people away and that sadly push my mom further into isolation. I feel sorry for her. And to tell the truth, if I haven’t already said this, if my mom, the woman she is today, was just some woman I met, I wouldn’t like her very much. She lies to every person including family and friends, and she gossips about everybody, especially family. The stress of caring for my ailing cat and my mom, who I struggle to like most of the time, is wearing me out.
But I think I am still pressing onward all the same. I think I am or maybe I’m just fooling myself. I am taking some steps forward towards my goals. They may be baby steps, but I am taking them.
(Cool picture, right. My cheap cellphone's camera made the lights bleed together creating this ghostly otherworldly appearance.)
Lately, my goal is to be as honest with myself as I possibly can, and honest with what I share. I'm sure this is not my thought alone, since Michelle Obama expressed something similarly or along those lines when she stated, "People can sniff out authenticity." What I write and record about my experiences with taking care of my aging parent is teaching me so much. It is allowing me to illuminate something for a generation of folks who are not quite at this place yet, and it is allowing me to recognize those people who have been here much longer than I have who are recognizing in me how new I am to all of this. It is teaching me too to embrace it all and all of its effects on me. That the truth of it connects me in a way I am more interested in. The truthful connection paves way for me to form new connections with people I have connected with in the past and even new people (some of whom I never ever would've imagined myself connecting with). It is allowing me too to live in a space of humbleness. I don't know the answers. I am a novice. I am tired as hell. And this shit is aging the f**! out of me. And it has given strength to the creative within me, and given that creative an authentic outlet. So all of this encourages me to bravely share it. I literally began this as a therapuetic exercise something I learned in my late 20's when I found myself in my year of anxiety and panic attacks. It turned out writing was a way to gain control of my panicked and anxious thoughts, slowing my heart rate, and deepening my breathing. Then, I used to always walk around with a pocket journal to frantically write in until I calmed down. I am sure what I wrote was a bunch of gibberish, but that gibberish kept me from losing it.
Today I am encouraged to continue to share my experiences because I am learning how connected many of us are as we navigate through this mystery called life. And oddly that connection has calmed me and comforted me. I am encouraged too by friends who thankfully encourage me to keep bravely sharing my experiences. I am also encouraged by the release I experience when I put the next experience out there. It's like that lesson in Proverbs: a word and a stone once launced cannot be reclaimed. Writing this or even recording this somewhat launches it from my being. But I've grown to notice that it's only launced if I am fully truthful.
Today's title was inspired by the title of Dan Brown's book, Angels and Demons. As a writer, I have been contemplating where these entities live, truly live. As a creative, I am beginning to believe they have always existed right inside each of us. That we are the angels and we are the demons. That there is light within us, as well as the deepest darkness.
Some days, in some dealings with my mom, a hot rage boils up so quickly that I become aware, or am reminded of that darkness within me; that it is not dormant or sleeping but fully awake, fully alert, fully watchful, fully involved in my life. I like to think that that is not the case, but in those moments of hot anger I see that that is exactly the case. And it knowingly laughs at me. It doesn't give a shit that I see it, that I recognize it. Actually, it wants me to see it, to get to know it, to invite it to be a bigger part of my life. Creepy, huh? Yeah, I'm a writer of dark stories (not all dark) but, yeah, there are some dark ones.
I've been searching within me what to share next. I made two short videos. My new phone has quickly run out of space forcing me to make videos less than 3 minutes long. I made one video, but was livid the day after and on a walk with a friend after work, I found myself sharing something I had begun to recognize about me and acknowledge about my mom. My friend encouraged me to share this story. It's not all that dark. It's just me being honest with me, which I am learning weakens that darkness.
It's a rather sensitive one for me. But I am learning that these sensitive things that feel so personal and isolating are not so special or unfamiliar or isolating or unique. In fact, what all of this is teaching me is that we're more alike than we are different. So, I bravely release this truth that I may begin to heal from it.
Looking back over time, I've always been comfortable with being a loner. When I moved away from home, I'd had a few brief roommates in my new city but mostly you'd find me like that image of every little loner kid in the playground...all by myself, but out of sight. But truly I'm an odd blend of extrovert in a crowd and hermit everywhere else. But I acknowledge that there have been far too many times when being the loner didn't make me a good friend or even a good daughter. I was bad about holidays, birthdays or even keeping in touch with folks. If there was a rock to hide under when it came to getting together with friends, I'd be happier under that rock. Funny how I'm more comfortable with those I barely know than with those who know me fairly well.
Today, as I tried to piece together some things in my home to make it more of a home for two, I put on some Earth, Wind and Fire and began to sing along as memories from back in the day flooded in. Of course that meant I stopped to look through old photos (so...not much was accomplished). Then I thought of an old friend, deejay, song writer, music producer, Eddie "Eaze" Coleman. Like so many of my old friends, we only keep in touch on Facebook. Eddie was one of the first people I met when I moved to my new city. I don't remember how we met or exactly when but I remember how comfortable he made me feel in the recording studio when I was usually a messy ball of nerves. He got me to sing like I didn't know was possible for me. I surprised myself (and truthfully him too). Thinking of Eddie made me go on Facebook to reach out to him. Eddie's last post was December 31, 2018. That was odd, I thought. He was an outspoken man with plenty to say about our current political climate. Quiet, Eddie wasn't. Looking through that last post, my fears were confirmed. I was almost 4 months past his death.
Seeing myself in the pages of a magazine...so to speak...
So, while in line at Whole Foods, I looked through a copy of Psychology Today. In this month's edition, there's currently an article about this journey of those of us acting as caretaker to our aging parents. The author speaks of the emotional roller coaster from guilt to anger and everything in between. She feels guilt because her parent died and she feels she missed the signs. I've felt this guilt when, as it turns out, my mom's body was shutting down from a UTI (a couple of times) and I missed it (both times). Today I wondered if on the weekend of our flu-like shenanigans I missed something then too.
So, regarding anger, I've had plenty of angry hot bursts that seem to come from nowhere at all. But during those times (like this morning), I am mad as hell. I'm mad but truthfully I'm not even sure why I'm mad or what I'm really mad about. But do stay out of my way at those times.
But the guilt...
I feel off mentally and guilty for not knowing Eddie died. I feel guilty for this loner in me who prefers being alone, going places alone, doing things on my own...alone. I feel guilty for not reaching out to my friends over the years. I feel guilty for not being better prepared to take care of my mom and for being broke more times than I care to admit. I feel guilty for never being much of a homemaker and for faking the whole homemaker thing ... like I am now.
My mom's in my care and that dominates everything. And I hate it, but I know it's what's kept her alive this long. She was quickly heading out of this planet if left like she was. So, I feel guilty for hating having to do it. But to tell the truth, in all of this, I am not fully taking care of me. I almost feel invisible.
But tonight I'm doing a "me-time" thing. I'm on my way, right now, to play volleyball. But in the spirit of not taking care of myself, I'm going out to play on a foot I somehow injured that hurts like a mugga-fugga. I feel guilty for that. I said yes to tonight's game and seriously I have no idea how I can stand on this foot on the court...so what about all that volleyballing stuff: bending, squatting, quick bursts, jumping, running? Ugh. I wish I said no. Sort of...
So, after the game...
My foot's still attached to my body. And I had mad fun. And even though my weight is up, and my mind is heavy, I played a bit like my old self. I didn't spike like myself (not really) but I sure did dig the ball like a ballin' libero pro. Bring it!!!!
Then guilt, or something like it, invaded my headspace again...
After the game, as 12 middle aged men and women made their way onto the oddly long elevator, I learned another friend, a volleyball comrade, died. Peter Lem was a really nice guy who is certainly hard for anybody to forget since he put nearly an entire roll of sport's tape on his fingers before each and every game. It was something unique and special to Peter alone. Peter, who I thought was named Victor all of these years but who smiled, hugged me just the same even though I often called him the wrong name, played a solid competitive game every week. He was a perfect blend of nice guy but fierce competitor. Talking about the tape made us all laugh a little bit on the elevator ride down.
In one day, I'd learned I'd lost two friends over the past few months.
But this full year and some months of taking care of my mom, I realize lost something in me too. I've maybe played 3 games of volleyball in an entire year when I'm used to playing once or more a week.
As I walked the streets alone to the train after the game, forgoing an opportunity to hang out with my volleyball buddies, it occured to me I've walked this same path after a volleyball game for nearly 30 years. Over those years I've shared an after game drink here or there, but I've mostly left the gang of volleyball players and walked this route alone. It was funny to notice the changes along the walk: new buildings, restaurants closed, new ones opened, the street is still a one way going north, the people are still all age ranges: some young, some older -- like me.
I guess all of this adds up to the joyless parts of growing older: parents become like children, friends pass away or divorce, places change but really are kind of the same, the seasons keep changing in the rhythmic way they do, and I too am truly growing older. It was a rather lonely walk tonight. Someday I won't be able to do it like I do now. My volleyball days might be numbered...just not for right now. I am sorry to have not had the opportunity to speak one more time to Eddie or Peter. I want to vow too not to allow my care of my mom to consume me, but I struggle to keep that vow. Something always comes up and I grow more and more tired.
But on a cheerier note...
I practiced a wee bit of self care this weekend. I went off with a friend without inviting my mom. I did have to slip out the door in order to hang with my friend, but once away I hung for a few hours then slipped back in. I've learned it's easier to go quietly and come back than to explain to my mom. Sometimes explaining works and sometimes it turns into something that exhausts me. I've also cut back in accepting some weekday jobs this week so that I can work in my home without my mom being here. While she's away, I clean, organize, dance, sing, go for a walk, and nap. Being home alone has become my chance to exhail, to just breathe. It's my temporary sanctuary.
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.
My year of hate
I can't believe how angry I am so much of the time
But what I hate is..."