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.
My year of hate
I can't believe how angry I am so much of the time
But what I hate is..."