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?
So, where have I been???
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.
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.
I'm just writing to keep from losing it.