November 4, 2018
We finally made it back to church since July. My mom was well behaved. I didn't have to sit on her hands or ask her to stop playing. She was really good.
So, a few weekends ago, was rocky. She had been screaming at the top of her lungs and pounding on my bedroom door Friday night into Saturday morning. She wanted stuff for her "pain." This thing she calls pain is suspicious. I am no expert, but after years of medical testing, and coming back with suggestions for alternative methods to deal with it, I suspect her "pain" to be more closely linked to anxiety and panic attacks. They're just familiar to me. I've been down the road of anxiety and panic attacks. That shit be making you think you dying and shit!!!
After her constant pounding, and wailing, and performances she put on for whoever answered their phone (but of course could never talk long because they all know her as well as I do by now), I could not take it any longer. I walked out of the apartment Saturday afternoon, went to a play (had a comp ticket), arrived late, and fell asleep. I was wiped out physically and emotionally.
What to do when I get home?
I was getting edgy and panicky. I did not want to reenter this troubling environment, my home. Then it hit me. I wrote a letter.
You are so right. I don't know your kind of pain. I am not a professional. I don't know what I'm doing. I'm over my head. Therefore, I throw in the towel and hand you over to the professionals who are trained and better equipped to help you. This weekend I am sending you to a nursing home. You will have the 24 hour care you need. We don't have much money and this is very last minute, but with our budget I can get you a bed in a shared space. I am sorry for having put you through so much for so long and for not understanding your pain.
I actually had reached out to a few facilities. It began to hit me that maybe this is all true and I can't handle this; that I may truly be over my head.
When you reach out to these places that ask for a contact number. This time I gave them hers.
I came home and gave her the note. She read it, and suddenly she was feeling much better. Her pain had magically left her. She claims it was the pain pill I gave her, and that because I was late giving it to her she was in that much more pain. The pain pill is a vitamin D3. She doesn't know that. I never told her that for months I had been giving her that instead of actual pain meds.
Her phone had been ringing. It was them.
Did you give my number to a nursing home?
Oh, the drama was not done. There was to be a part 2 to this miniseries. I overheard her on one of those calls telling them how cruel I was to keep every thing from her, to keep her locked up in this room (my one bedroom apartment), and never letting her go anywhere (except to play bridge -- she somehow managed to say). By the conclusion of the call I heard her telling the person she didn't want to go to their facility. Noooo. I'm going to stay her with my daughter.
After some time, I rushed into her room telling her I got a call from a detective investigating a case of elder abuse and that he was allowing me to walk myself over to the precinct to turn myself in. I told her Adult Protective Services were coming to pick her up for her safety.
You aparently told some lady I was abusing you and she called the police. Adult Proctective Services are coming to save you. Get dressed.
Here I packed her suitcase and put it by the front door. She quickly put on the clothes I handed her, sweats.
I have to go.
I'm not going anywhere!!! She demanded.
Ma, you told people I am here abusing you. They're coming to save you. I have to go to the precinct. The super has my apartment key and he will let the people in to save you.
I don't want to go. I'm staying here.
Then you should not have told that lady I was abusing you.
I didn't say that.
Well, then you need to think before you say such things. Bye. They'll be here sometime this afternoon.
I left and went to spend time with my friend in hospice care.
Later, I came home to find my mom wide awake, in her sweats, television off, looking worried. Her suitcase now in her room wide open.
No one came?
No one came.
Well, let me walk you down to the shelter. They want to make sure you're safe.
I don't want to go to the shelter.
I hear you but you got folks worried about you, so let's go.
Finally ... Okay.
Then I said, I could take you in the morning. We could just get some rest for now.
Yes. Let's go tomorrow.
Later she came to my room asking if she could just stay for a month because then I'd see how much better she is in behaving. Just one month.
You think I should give you another chance?
Okay. But it won't be one month. It will be day to day. I told you. I'm over my head. This is above what I know how to do. So if things get out of hand like they did this weekend then you will definitely have to go to a nursing home.
I'll go to my brothers, or S or D's place.
B, have you noticed that in all this time no one has offered to let you come stay with them despite all the things you have said about me? It's because no one wants this. This is above all of our heads and your behavior is too much. I won't deal with it. And not one other family member will step in and deal with it. I know you know this because as much as you have begged them all in the past, no one has said for you to come live with them.
She has been so much nicer since then, and miraculously her pain has been manageable with the vitamins disguised as pain meds.
This Sunday we went to church. I told her I will no longer make going to church a job for me. If she wants to go, just like she gets herself up to go play bridge, she will have to do the same on Sundays. So this Sunday she got up, watched Joel Osteen, bathed, and put on her undergarments and waited for 9:30. Then got up and fully dressed. She was so good in church too. She was so good that in fact she surprised me by walking up to the alter to join the church.
Forgive me for saying this, but there is a part of me that knows the con artist is still there behind the eyes playing me. Her behavior is so adept at playing people, but if the con wants to play me by behaving better, joining church, being more well-mannered with others, eating a healthier diet, exercising, and such...I'll take it. She still acts out on occasion but she is quick to behave. It's these things that makes me see the child that has surfaced. A child that has learned some very bad habits, and will do what's right if only to buy time, relationships and companionship.
This is going to sound creepy-ish and probably out in left field but here goes: there is negative energy associated with the house I grew up in. But the energy or entity is somehow malleable. That is it can be either bad or sometimes good. Yes, things have happened that were oftentimes unexplainable. But as my mother lived more and more in that house alone, I sensed the energy shifting to something ugly and destructive, and she had become its playground. So as she looked at me in church this Sunday, before she grabbed my hand to walk her down to the alter so that she could join, I felt like there was something else just behind her eyes. It briefly made me think of that something from my childhood home. But like at home, I recognized it and walked with it down to the alter. Really because I felt the presence of the two energies. I felt too it recognized that I recognized it as I looked it in the eyes. Crazy stuff...I know. But if I am to be won over by some unknown energy willing to be better at being a better person, then I am willing to travel this lane.
Days of Truth
Since Sunday I have come forward with the truth to my mom. I told her the woman who comes over 5 sometimes 6 days a week to take her to bridge, get her nails done, her hair done, take her to the public gardens is someone I hired. That this is the costliest of all of our expenses. That this is why we are so often without money to do things. That she is the second person I hired. That I actually had to fire the first lady.
My mom was shocked but relieved that I have finally included her in the truth. That so much did not make sense about our money but now she gets it. I told her the lady works 36 hours and sometimes more a week, and we pay her an hourly wage that is competitive so that she will stay with us. This is so very expensive. It is a huge percentage of the money we bring in each month, but I told my mom she needs it so that she can have a life. I also demonstrated for her how it really would be cheaper for us to have my mom go to a nursing home, but that she would never have the daily activities she has now, or the life she now has. She now gets it.
It's so far from perfect. She still says the wrong things at times, and is sometimes hurtful, but at least she will listen for now if only just to stay here and out of a nursing home. Oh, and she is actively trying to sell her home, my childhood home. So we've had some progress in understanding her life as she knows it is changed. Her residence is changed. Her state of residence is changed. Her home is changed. She now has a dog and a cat. It's taken us eleven months to get to where we are now, and I hear her quite often referring to my home as her home.
,My mom is fine. I'm fine. A friend is not.
Once upon a time I worked as a standardized patient (an actor) at Memorial Sloan Kettering Cancer Center. The job of the program at MSKCC was to teach empathy skills to all staff and medical personel with dealings with patients and their family. In some scenarios, there were those times when people (patients, their family and friends) were told there is nothing more medicine can do other than treat any pain and keep the patient comfortable until the end came. But the end was expected to come.
I did this job for about 2 years. It was illuminating in terms of making me wish more personel would emphasize the necessity for empathy with patients and their family and even friends. Too many of us have had experiences with those who work in health care and lack any semblance of empathy.
My friend is, today, in a hospice attached to a hospital in the Bronx, NY, and is receiving palliative care. The people are amazing. There was no check in, find my friend's name, give me some hideous sticker to attached to my clothing that may or may not fully come off. My first day there, walking through the metal detector (sign of the times), the police officer pointed the way to hospice care. Following his directions, after the third turn, a nurse walking down the hallway, pointed to my next turn at which point I'd take the elevator from there. Once off the elevator, a cleaning lady asked me who I was there to see and pointed out his room. At which point, a nurse walked in introduced himself to me, told me it was okay to sit closer to my friend asleep while getting his respiratory treatment. Another nurse would walk in later to introduce herself to me and told me to let me know if I needed anything.
I'm just a friend of his. I'm not family.
It's nice of you to visit him. Let me know if you need anything.
What can I say about my new experience. As an actress, digging deep into my imagination to imagine what it might be like, and pulling up those ideas and emotions, it was scary as all hell. Today, it's not so scary. I don't know if it's because my imaginative experience prepared me, I'm older now and have had other life experiences that prepared me, or the warmth I experience at the hospice within the hospital. Or maybe it's all of the above. My friend has come to understand he is really sick. His lungs are quickly failing him and have begun to exhaust his heart. His brain is alert and he is fully aware of his circumstances. That part is a bit scary. But I learned that one of the medicines he is given makes him sleep a good bit, and that one day he will go to sleep and will not reawaken.
I am not sharing this to gain sympathy, but to say thank you to those men and women who so faithly and lovingly worked in palliative care. The nurse I talked to this week told me she had worked in palliative care for 8 years. How amazing is that. A part of me, a tiny little part who seems to be herself fading away, thought how could you do work for so long with people who are dying. But then a new part of me arose saying death is inevitable, and for those who are dying, let them have the best life possilbe while they live. That seemed to be the mantra there at hospice care. At the hospice care the patients can have what they want, and it is given with love.
Thank you to those doctors, nurses, palliative care teams, and hospice staff who make the environment so warm for the patient, their family and their friends.
My mom likes to help me practice my lines for a class, a show or an audition, but I often get so overwhelmingly busy I forget to ask for her help. I do see the benefit of it: 1) I get to run lines which is always helpful, and 2) we have a bonding moment.
So here she is helping me right before my class. I may sound harsh but I was allowing myself to be in character-like-ish. Nothing too exciting just a mother helping her daughter with her homework.
She's such a drama queen though, my mom, and clearly I see why I was drawn to drama (acting).
I don't know how I'm going to do all of this, but it's just really nice to see her so happy, and somehow it all just keeps working out...so :-)
"Your mom wants to get her hair braided this week."
"Okay, I will schedule it for Friday."
"She told me she's getting it done tomorrow."
"Well..okay! Ask her if she wants to miss bridge Thursday or Friday."
"She said Thursday."
"Okay, I'll schedule an appointment and call Access-A-Ride and change it."
"She said she wants to get her nails done too."
"She can go to this place on 8th for her nails. It doesn't cost as much."
"Okay. How long does it take?"
"To be safe, say hour and half."
"I'll set up the rides now."
"I got the rides. So first pick up is at 12 noon. From there next pick up at 2 PM. From there last pick up at 6 PM."
"Sounds good. Oh, she wants to play bridge on Saturday."
"Oh boy. Geesh. What time? I'll schedule the rides. Oh, are you available Saturday?"
"10:30 to 4. Yeah, I can come Saturday."
"Thank you. I have a class on Saturday."
When I got home last night, after two jobs, one audition, and one class, she was in such a super duper good mood. She was so happy. She knew she was getting her hair and nails done, and that she was going to bridge on Saturday. So for the hair and nails, that's about another $200, and another day of day care too. This week is expensive, but she was so super duper happy. I guess I just have to do it. I have to do it. It gets tight financially every single third week of the month. But, prayerfully and thankfully this is the first month in a long time that I have had consistent work with my second job. And, I have made up my mind too, crazy as it may sound, to keep on my journey as an actress as fiercely as possible. I am paying for classes too and a voice over demo. I had a class last night that followed an audition and a class the previous day, with three auditions on Monday, a first rehearsal tonight for a reading, shoot a student film tomorrow evening, and a class on Saturday. What I notice is that the more I keep practicing my art, even in the midst of all this, then the more I am able to become fully apart of the creative building and process, and the more things seem to get done and even miraculously come together.
"Take what you told me and Bless the struggle, Bless the process. Keep moving forward knowing it's the birthing. The struggle is tremendous in the birth canal, during the birth." Well, that's not exactly how it was said, but that was what was mirrored back to me. I had felt inspired to uplift a friend, then she turn around and said my same words back to me, Bless the struggle. I see that now. The lesson I've been taught goes even further. It's to give Glory in the struggle. That if you really want to see what God can do, watch Him take you through this struggle. That our struggles are a time to hold on and watch God do what God does. To do not worry, do not fret. Watch.
Taking care of my mom right now has made me leap into my shoes of responsibility. She is with me and will be with me until her health changes significantly and she absolutely must be in a hospital or facility, or until she makes her final journey from this life onto the next.
So, last night when I came home to someone so very happy, I realized that I don't know how, but it will all work. My journey and hers will work. She has an absolutely beautiful caretaker. I love her and how she loves my mom. And while she takes care of my mom, I get to take care of her, my caretaker. I know that like me she needs a Blessing too, and I hope that we are a Blessing her.
All of this and its connection to my acting career reminds me of how I used to want my acting career to blossom when my stepfather was alive. I wanted him to enjoy bragging about me. Gosh, did he do that. A million years ago I once directed a children's choir for a bit, and when I got home to visit my folks, I heard from all of these people from all over the place talking about I was directing the Brooklyn Tabernacle Choir!!!! Uhhhhhh no. Oh my gosh.
But he passed away 22 years ago now. And truth be told for those 22 years and those years prior I lived the life of one who absolutely believed she did not deserve this or that. I preferred to be invisible, to be unseen, yet the artist was still within me. For maybe a decade or more, I would wake up, go to work, come home between shifts, sleep, get up, go back to work, come back home, eat fried this or fried that, watch TV, sleep, then repeat. I used to pray to be invisible, seriously. I was embarrassed by any attention, compliment, anything. I wanted to be invisible. I was embarrassed by my life, my past, my present (I weighed nearly 200 pounds...and I am there now at nearly 200 pounds...but, thankfully, on the down slope). I was perpetually broke, which matched my spirit that was perpetually broken. I just gave up on everything. I just functioned enough. But somehow I kept taking acting classes and playing volleyball. In other words, I engaged a bit. But seriously, I slept a lot during those years. I just came home, ate and slept, ate and slept. I was successfully invisible.
Yesterday, I successfully had an audition time changed to between jobs, but I was a half hour late for job number two that I will have to make up tomorrow (oops), but I felt (as teachers do) a bit of a breakthrough with my student--not a mountain or anything like that but a little scooch forward. For my class, I sat there applying lessons (in my head) I had learned from my other acting classes and an agent I met with, in other words a shift happened within me, a shift happened in the artist within me, and when it was my turn to go front and center of the class I recognized that the shift is more than just within the artist within me. I entered a home last night, my home, with a person as giddy as a happy little child. I readied $225 in cash for her next day, I let go of the thought or worry that I now had an additional day to pay the caretaker, and all I felt on the inside was that I don't know how, but it's all going to work out.
Is that my phone vibrating? I think that's what I hear. I pick it up. It's my mom calling. I put it down quickly make my way to her room staggering like a drunk. She's sitting up rocking on the edge of her bed.
I sit next to her. Is it her heart? A stroke? Is she going to throw up?
What's wrong? You need to go to the ER?
Nothing. Just rocks.
Here I might be way wrong, way off the mark. But something hits me in my gut and I walk away.
My phone rings again. Damn. My alarm is set for 5:04 AM. I have to leave for work at 5:45 AM. This time I answer the phone.
Come up here.
The picture becomes clearer for me. I've been there. Those anxiety attacks often strike right in the middle of the night. They're scary. I think this is what this is. When she tried to walk out of my apartment the second time back in December it was around 4-ish in the morning. Her nightmares that she used to talk about that kept her awake nights woke her around the same time.
I want to be sweet, and comforting, and understanding, but I'm sleepy as hell, and cranky because I know I have a hell of a long day, AND we're still in our income holding pattern. And, how many times has she cried "Wolf," so to speak. And how many times has she out right played me. That's a slang thang for taken advantage of. I just can't muster compassion right now. My cup is too too too full.
I turned off the door alarm so that I could sneak outside with my dog, and then sneak away to work. I tiptoed into her room after my bath. She was tucked fully under her covers. I already know how later she will claim she never went back to sleep. She was sleeping at 5:45 AM. But, it may not be a productive sleep. But I remember that after the anxiety attack sleep...oh it was so nice. I would sleep like a baby. That was a good sleep for me.
The timing of this panic attack makes sense. Two nights ago as she followed me through my tiny apartment nagging me about this or that, I shocked myself. I was exhausted. I was worn out. I was stressed out. I shocked myself. I walked up to her, put my hand over her mouth then said:
Listen to me. You want to go home. Fine. In four days, I will buy your ticket home but you're not going home. I sold your house. You're going straight to a nursing home. It's called B---dale. They've been in constant contact with me. And that's exactly where you're going. Keep at this. Keep it up. You've got four days. Four days and you will be in D.
Her nagging stopped; her pouting stopped; her tantrums stopped. She walked around me like a little girl who just got in trouble with her mom sliding along the wall like she was trying to be invisible. It stayed like that for a couple of days. About a day later, I walked in on her talking to someone on the phone telling them I already had her nursing home picked out. I walked away.
Then last night's (rather this morning's) panic attack or anxiety attack. I've had plenty of those babies. And they do love to strike in the middle of the night when everybody else is solidly asleep, and the house is almost supernaturally quiet. You feel more alone than any other time. Your own heartbeat and breathing so loud in your own ears. Yeah, those late night anxiety attacks suck.
I'm are work right now. I tiptoed into her room, set her alarm clock, placed her medicine, and watched her breathe through the blanket tucked around her. Right now, as I think about how she is cared for, as I think about the sacrifices I'm making, how my income goes to her care, how like a ghost I move around her putting things in order, how I check on her more than she knows, how her caretaker reassures me about her regularly, how her friends back home help me take care of her house, and mail meds to me that her doctor already ordered back home, how this invisible team takes care of her, I think of how ridiculously lucky and blessed she is. She has a daughter who does these things for this imperfect person, for this person who was seriously imperfect during her daughter's younger years. She is so fortunate. I don't have what she has now. What will my later years be like without a dominating bully of a daughter?
I get the panic attack, the anxiety attack. It's got to be so seriously scary as we grow older. Mortality looks you in the face and whispers in your ears all the time. Vulnerability and helplessness become life-like entities showing you they're no longer just concepts. They're daemons. They're tormentors. They're joy stealers.
Sunday, August 12th, 2018, I watched 60 Minutes. I haven't watched that in years, but somehow I turned on my computer in time to see that 60 Minutes was doing a follow up segment following a man, a retired policeman, who had decided to take care of his wife who had been diagnosed with Alzheimer's disease. I learned a few things. But the thing that struck me the most was the financial burden.
Today, on this morning, as I sit here typing this on a temp job where the office is primarily empty because many people are away on vacation, where I come in at 6:30 AM, usually the first one to arrive to a dark office where the lights are set to go on based on motion, where the elevators doors open to blackness waiting on movement, where it is so quiet and the perfect escape from home, home where I am way way way over my head, I have two missed phone calls both before 7:00 AM. Both are from my mom letting me know I didn't leave her any money this morning for her day. She doesn't know but will soon find out I had to cancel her entire week of activities. She doesn't know I had to ask the caretaker last week if I could pay her at the end of the week this week. She doesn't know that both of our accounts (hers and mine) hit bottom. She doesn't know that I have no clue how to manage this budget.
In the 60 Minutes segment, this retired man in this beautiful home admitted that when he finally hired a caretaker to take care of his wife he spent $40,000 a year on her care. I am on track to spend between $25,000 and $30,000.
This is challenging. Sometimes, I just don't feel like I can do this. I will confess that times like these, where my money has hit rock bottom and I am in a waiting pattern waiting for that next influx of income I just want to quit.
There are resources. I continue to hear from so many people, but here is what I have learned: I have been on the phone with one case worker, two social workers, had one case manager come to my home, and gone to a conference at Columbia Presbyterian Hospital for caretakers of persons with Dementia, my mom does not qualify for any of that financial help. None. Sadly, it would be cheaper and more cost effective for her to be in a nursing home. But I see how she has some semblance of a life here. The people are all new as is the environment but at least she is making new friends and has some independence. Nope, it's not her home. It's not the friends she has known for years. It's not the town she grew to call home in the 1960's. It's a town she tells anyone who will listen that she does not like. My apartment does not have a view. It's a one bedroom apartment, and the living room has been transformed into her room. There's a daybed where there once was a sofa. The book shelves have become her dressers. The hall closet where I used to keep my coats is now her closet.
This week, with our current financial low, I am fighting off those negative voices telling me to quit, to send her home, to give up, to give in. They have painted visions in my head of me packing her stuff up and shoving her off to the airport to fend for herself. She'll figure it out, they whisper. She'll be home and out of your hair. Then truth's voice booms in and paints its picture, She'll be in danger of overdosing. Those predators will pounce on her. She will not survive, and if she does she will lose everything. They will definitely put her away in some institution. And that look you got from those paramedics back in December will be multiplied. And friends and family will definitely have something to say about you, again. The burden and condemnation will multiply greater than you can imagine.
I hate how this has me behaving.
I don't like my behavior during these times, or around her for the most part. She is going to ask for money we don't have and cannot spare, so I am going to stay silent, walk away from her, and hide in plain sight. I'm not going to tell her N is her caretaker; she's someone I pay hourly for 35 hours per week (and sometimes more). My mom is going to beg for more pain medication and extra sleep supplements (the vitamins that I substituted for the Aleve, extra Melatonin), and again I am going to walk away from her, just stand up and walk away while she calls my name begging me to not leave her. Don't do me like this, she'll say. Like this is ignore her requests, but I am going to ignore her. I am not going to respond to her request, period. I learned nothing I say will penetrate her consciousness. I hate how I am though. I mean, I know there is no reasoning with her. Biologically she is incapable of reasoning. But I hate how I am. I literally just walk away.
That's Mr. B and his ex-wife in the picture.
Mr. B is my 83 year old neighbor. He lives alone in a city where he has no family. Another neighbor introduced us about maybe 10 years ago. He was going to visit his mother down south and needed someone to watch his cat. I did it. Ms. R, our neighbor, volunteered me. She used to check up on him every week. But pancreatic cancer took her away from us about two years ago. Before she left this world, she asked me to keep an eye on him. He has my number and calls when he needs something. I usually run down to him and help him out. When his cat died, he called me to put the cat's body in the pet carrier case. *Sigh. Then he adopted another cat.
This weekend I dropped by to put down roach gel. He called me on Friday of last week to put his groceries away. He has been feeling a bit winded lately and needs more help. I had to have a friend drop by since I was at work. She texted me the next day to say his home was infested with roaches. *Sigh and Eek*.
I dropped by his home Saturday to tackle those roaches. Oh my gosh. So, while there, I picked up a bit, took out a huge bag of garbage, took mental note of how much more needed to be cleaned, then cooked him a pot of spaghetti, and left calling him throughout the evening to check on him asking if he ate. He hadn't been eating lately and had lost a lot of weight between when I last saw him (early spring) and a month ago (when he called me to drop by).
Then I realized the juxtaposition here. Here was Mr. B, one year younger than my mom, alone in his home, no one other than myself to drop by, and lonely. He has a new young three year old cat, but he is lonely, and his home is slowly transforming into something disgusting with evidence of the beginnings of hoarding. Spending Saturday with Mr. B made me realize how good my mom has it. Yep, she's a pain in my arse. She drives me up a wall. She nags and whines like a little obnoxious kid (she's really friggin' good at that sh*t). And she is safe, well fed, clean, has lots of activities, has a caretaker who is with her five days a week; who also took her to her home for an entire weekend taking her to a concert in the park, and to church. I stopped taking my mom to church by the way. The struggle with monitoring her behavior takes away from what church gave/gives me. I don't know if it is with me that she acts out the most or if I just have a very low tolerance threshold. It's probably both.
But I am grateful that I can help my mom, even if it is from a distance (ish). I feel for Mr. B. His ex is in town this week. She dropped by the Sunday after I spent time with him. When I dropped by to say hi to her, she was drenched in sweat and the apartment smelled like bleach. She had been cleaning up a storm, literally. She had dumped all of that collected junk he had begun hoarding. She told me too there was a collection of dead cockroaches. The stuff worked. Seeing the work she put into his apartment made me realize the difference between those who love you unconditionally and those who drop by to check on you on occasion (me). Those who love you go the extra mile (some do). She sort of reminded me of myself as I listened to and watched her with Mr. B. She cares about his well-being but is smart enough to keep space between his well-being and her own mental health.
I needed to write this today. I felt anxiety percolating, wanting to burst through, and anxiety knows I ain't going back there. I ain't letting anxiety win. I will let it in, if I must, but I will not be threatened by it. I've already been there. Once is enough.
Update & witness to a Blessing:
N, my mom's caretaker, just texted me to say she is going to keep my mom's schedule. That she recognizes what I'm going through, and where I am, and that she will keep the routine for my mom. This literally means she is going to pay this out of her pocket; that she is going to work spending her own money. She paid for my mom to get her hair done last week. Of course I am going to pay her back this week. I want to. I want to be as much of a Blessing to her as she is to my mom, and to me. This is validation for me. See last night, I sat in the dark in my bedroom, hiding from my mom, thinking the same thing over and over: I quit. I tip-toed out of the apartment this morning avoiding my mom's calls knowing where we are right now, knowing that her week was going to be screwed, and then this. What does it validate for me? It reminds me to hang in there. It reminds me to trust this journey and the Blessings that always come in the nick of time. II hear that whisper from the Universe, from God, from the Angles that quietly says, Don't quit.
Raised on a farm and now in her element.
It's Tuesday, and it's a good day. Actually it just doesn't feel all that bad right now. She repeated back to me what I have been saying for a while now:
So, I'm not going back home. I can stay here or a nursing home back home.
It's not a permanent statement. She does return to the I'm going home statement but I am growing stronger in return, and whatever vulnerability she spied within or upon me months ago (weeks ago) isn't here today. I can see it in her face as she looks at me. She's in there reading me, studying me, and giving in -- for now.
Last week it all began when I learned that for this week two days of Bridge are cancelled because the place is closed.
What to do? What to do? Ugh!!!
I looked into boat rides around the island but the affordable ones were 30 to 90 minutes long, and that's it!!! But of course there are bridge repairs today also so the three hour cruise (Wait, is that a Gilligan's Island lyric? Yikes) is not going around the island.
But then a thought hit me, flowers. So today, Tuesday, I sent her to the Bronx Botanical Gardens. She was in heaven. She loves flowers like a fish loves whatever the hell a fish loves.
I felt like I had done something right especially after watching her sleep all weekend. Was that sleep depression after somewhat realizing she can't go back to life as she knew it, or a deeper depression realizing she likes this arrangement, or a product of the disease, dementia.
Sometimes when she throws one of her tantrums, stomping and demanding to go home, I get an odd feeling telling me she doesn't really want to go back and be on her own. I feel like there is a tiny space deep down inside her that wants things just the way they are. It's just a feeling....or maybe a projection. I mean, she hasn't actually packed her luggage or anything, or even organized her things like she was packing them up.
Sometimes I look at her and I feel so sorry for her. Her brain and body have robbed her of her independence, and robbed her of an ability to reason and to make inferences of the information around her. It sometimes makes her behave poorly causing friction among those present. Sometimes some people absolutely dislike her because of her behavior, and sadly it's easy to see why.
I tell people it is as though the worst of her character survived.
Oh damnit, Wednesday, why'd you have to throw a monkey wrench on my day off? Damn
Today, Wednesday, I sent her to another cancelled game; cancelled for the summer. Ugh!!! I learned today just now as she sits up there with her caretaker. And now her caretaker has to be with her little sourpuss self trying to find ways to lift her out of her grumpy mood, a mood that often gives way to one of those funky tantrums.
Thank you, Jesus, for this woman right here, her caretaker. Wow, He guided her into our lives, or us right to her. Reaching out to one woman, when the time came to find a new caretaker, the lady I reached out to recommended the amazing woman with us today. I knew she was for us the moment I spoke with her.
*Sigh* back to my momma and this day with the monkey-wrench thrown in our plans...
I almost forked out stupid bucks for my mom and her caretaker to catch an overpriced-masquerading-as-discount Broadway matinee but thankfully the god of b*tch-why-in-the-world slapped me out of it. Guess my mom will just have to try out Bingo today.
So, they simply ate lunch at the community center then came back home and the three of us watched a movie together.
A whole day off from work, a whole day to the apartment all by myself, my mom off to play bridge, and then a monkey-wrench. I had considered sending her to the other Botanical Gardens today, but thunderstorms were forecasted for today. Ah, oh well, at least it was kind of nice being home for two and a half hours by myself, and watching a movie with the two of them wasn't all that bad.
That's Gabrielle watching me vent via this blog.
I had an audition this past Saturday morning. I knew it shouldn't last too long. As I prepared my sides the night before, it hit me. Saturday's audition would become my exit strategy to get away. I was going to go out and just do me.
On a regular basis, several times a week, my mom complains that I "never do what (she) wants," or "I never listen to what (she) has to say." These proclamations often come just as I am going to bed, or to the bathroom, or taking out the garbage, about to walk my dog, checking on a load of clothes in the laundromat, or any number of chores or activities.
She truly pouts, throws her hands up and down pounding or smashing them against the bed. She looks like a small child throwing tantrum.
Once upon a time, in the first few months, I used to give her that time or try to explain myself. Then the tantrums worked perfectly on me. But it often ended poorly. It was always a no-win battle for me.
This morning, at 5:25 AM, after hitting snooze for the second time, I finally forced myself to literally roll out of bed, reminding myself that I hadn't put out her medicine and supplements for the day, and that I had to pack her bridge game entry fee money (oh, and remember to give her a twenty so she can give ten to the caretaker who sneaks it back to me so I can repeat it the next day), and pack her Access A Ride money. I also needed to put out her medicinal, um, stuff. Then walk my dog then feed my dog and cat. Plus, I needed to put a snack in her purse for the day.
As I sat on the train at 6:25 AM on my way to today's job, I received a text from one of my mom's newest east coast bridge partners letting me know that the next day's schedule changed. So (*sigh*) sometime during my work day today I would have to spend at least fifteen minutes changing her schedule. I'd have to get that done before 5:00. I am suddenly remembering that I also need to schedule a second MRI, pay her water bill (which is now late), send money to her neighbor via my cousin to pay for lawn care. I need to find out about getting someone to look at her roof. I must pay the newest co-pay for her latest doctor's visit. Oh, shoot, I must make that eye doctor appointment as well as a breast exam and bring up having her stomach examined. I...I think that's it for now.
Yeah, I never do anything for her. Sigh...
Yeah, I have to apologize for all my tantrums I ever had as a kid, as well as every time I told her she didn't love me.
I wonder if she felt her money slipping away when I was little like I feel it slip away today. She's so expensive...
I finally bought myself new clothes and have decided to work on my materials needed for my career. I realized I had been neglecting myself like crazy while I spent time "never listening or doing anything" for her.
Things have been somewhat calmer lately. She recognizes that I don't answer her when she speaks about going back home. I have continued to keep her weekday schedule pretty full with bridge games, which are only about 3 and 1/2 hours long. After that she comes back home and settles down.
Did I tell you that I finally fully hired the newer caretaker? No???
Oh my goodness. That was the hardest thing in my life. I let the first one go. Listen, at the end of a work day, a couple of colleagues sat me down to coach me on the process of letting someone go. It ain't no ways easy.
I got spiritual help too. On my way home from work that day, I walked a different street. One that did not carry me by the bank to deposit my check. Riding on the train, I remembered. So I get off the train a stop early, walked to the back exit (which I seldom do at this exit), and at the top of the escalator near the turnstiles a prayer station had been temporarily erected. I never visited those set up around the city before. They pop up every now and then.
That day as I walked towards the exit, I continued along the path that led toward the prayer station almost marvelling at my legs that seemed to be marching all on their own with my body in tow.
My legs seemed to march me right toward one woman in particular. She rose to greet me and immediately took my hands in hers.
How can I help you, my sister
I need prayer.
How can I pray for you.
I need to fire someone, and I want to pray for her. Then the tears came so quickly.
Then she prayed. I've never done that before -- prayed in a public place --been so exposed and so vulnerable and so public.
Afterwards, when I called her, my caretaker, she didn't answer the phone. She wouldn't. I left a message, and I sent her a severance pay. All I could think about was I know all too well what it's like to no longer have money coming in that you expected to have coming in.
I love our new caretaker. The lesson I learned with the previous one was to be brave enough to communicate my limits before things spiral to a point of no return.
So I hide in plain sight. What's that all about?
Oftentimes when I need a break from my mom, I escape to my bedroom. She's sometimes not too good about being alone. So, it's at those times that I have to hide from her. Sometimes I sit on my sofa that is parallel to my bed with the lights off. Last night I scooted down my bed just about half way down and put my pillow on top of my head. Either way, my mom stands in my doorway of my small bedroom calling my name over and over. It's a strange thing. On my sofa I look right at her with just the bathroom light filtering into my room, and she never sees me. The bed is in right in front of the door, and even then as she stands there she still does not see me.
All this does is teach me. No matter how many times she insists that she can go home and be on her own, that she's better, my ability to hide in plain sight right in front of her on a regular basis tells me otherwise. I look forward to the day that I can afford to pay the caretaker to spend an entire day with her, on multiple days, beyond bridge.
She has taken her to get her nails done after a bridge game, but I wish to have more of that. I realize my mom is with her caretaker about the same time I am at work. She comes home then I come home. I don't often get a break. That's why I have had to resort to hiding in plain sight. Last night after a ten hour work day followed by a three and a half hour class and a brief half hour rehearsal with my scene partner, I was Tired. It was 10:50 PM by the time I got home. I would have to leave by 6:15 AM the next morning. I had to get her money together and her medicine together for the following day. And I needed to just go to bed. She was not ready for me to go to bed. I did what I had to do for her and for me, then I went into my bedroom, turned off the light and hid in plain sight with my door wide open. I watched as she stood at my door calling my name in the dark room, then tried the front door of the apartment (which has an alarm and two door stops so that I won't be surprised by another late night wandering). I watched her trying to locate me in my small one bedroom apartment. I watched and realized I was watching the teacher (she is a retired school teacher) teach me how necessary it is for me to take care of this person for the rest of her life.