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