First, this is another one of those blogs where, on my end, I have literally rewritten this entry (topic and all) at least 20 times. The original draft date for this post is January 3, 2020. A lot has clearly happened since then.
So, this Coronavirus, damn!
I’m in NYC so, yeah, shit is serious here. But nursing homes, double damn!!
First, backing up - Context - You know.
Ya’ll during those first months in 2018 that I had my mom in my care, that shit was hard as hell. Ain’t no other way to say it. I was angry all the damn time.
She arrived that December 2017, for a holiday visit, but by January I knew I couldn’t send her right back home. By April I didn’t know what the f*** to do or how to do it. I didn’t know how to take care of this human being who came with so many medicine pills, who was confused as hell, who hated being here almost as much as I hated having to have her here, who’s being here shrunk my comfy one bedroom apartment, who’s personal care and well-being became my full-time job on top of my full-time job, who according to multiple social workers qualified for zero assistance with care because she “made too much,” but who knew that my mom didn’t actually “make too much.”
She desperately wanted to go back to Detroit. At first I thought I was getting her healed up enough so that she could go back to living in her house by herself. But “healed up enough” never came. So by April, I reached out to “A Place for Mom” in Michigan just outside Detroit. I had begun the search for an assisted living residence. I listened to folks, and observed for myself, that there was probably never ever going to be another time when she would be healthy enough to live on her own in her house. I made the search almost exclusively in the Detroit area because she insisted on going back there since all of her friends lived there.
The prices weren’t too bad until I started tossing in amenities like: medicine distribution 4x a day, laundry service, apartment cleaning service, access to leave the campus daily, oh, and memory care. With those “amenities” the monthly fees began to add up.
Then we (her friends, family and I) had to talk about my mom’s new ways. My mom had ways of disappearing in Detroit. She had friends of no good intentions who took advantage of the little old lady whose purse was never fully zippered closed so that the money she just took out of the ATM (usually no less than $400 to last the month) constantly fell out of her pursel; a little old lady high from taking her medication improperly and taking over-the-counter pain pills like they were TicTacs whose purse fell over onto the ground, as she constantly dosed off, dropping out even her ATM card and identification onto the floor of the car, living room, kitchen, den, grass in the back yard, front yard, wherever. More than twice these friends took her ATM card for a spin, taking $800 from her bank account one time and several hundred another time. She was embarrassed that we knew but swore these folks were her friends.
I overheard a conversation with one when she was first here and I had canceled her flight. This woman called herself my mom’s daughter, said all the right amounts of I love yous, and more than once said to my mom, “I bet if you knew she was gonna keep you there, you never would’ve gone.” To which my mother answered, “You got that right.”
I had many a times thought about shipping her right back off to those vultures. I had even told her that if she wanted to go back home so badly, ask them to come get her and bring her back. She never asked them.
Representatives from assisted living facilities kept calling
But still I looked into assisted living facilities. But in New York state the price per month quadruples in comparison to Michigan. New Jersey too is much higher than Michigan. Michigan’s prices are realistic. So she stayed here, in my cozy one bedroom apartment, until I could figure out what to do.
On bad days those calls had me seriously questioning why I was having my mother live here with me.
Eleven months into this new arrangement and the living room finally began to transform into a bedroom. I finally traded out the sofa I had her sleeping on with a daybed. It’s crazy how long it took me to actually make that switch since the sofa’s pillows always slid towards the floor so that I constantly had to push them back into place so that my mother didn’t slide off to the floor. By March 2019, I finally ordered a couple of dressers, and got rid of the love seat, putting in a sofa chair, ottoman and nightstand. By early spring the living room became a cute bedroom/studio apartment.
By October 2019, I told the representatives I am keeping her here. I was exhausted, burned out, angry, overwhelmed, neglecting myself, but it occurred to me that my mom would not be able to go to all of the different senior centers that she goes to daily if she was in a facility. That she would lose the little bit of independence she has left.
Around the same time, at one of my mom’s doctor visits, the doctor had a talk with me while my mom sat there. My mom was unable to hear the conversation because she had broken her hearing aid -- again. The doctor told me about how she took care of her father for five years and the toll it took on her. She talked to me about truthfully considering putting my mom in an assisted living facility. I told her how I like how my mom had a semblance of independence while living with me. The doctor asked me to weigh that against the cost to my own well-being.
And of all days, after this doctor’s visit, Access A Ride was 2 and ½ hours late picking us up from this doctor’s office. My mom was the last patient. The doctor kindly let us wait in the office until our ride arrived. That night instead of getting home at 7PM we got home just before 10 PM. We were hungry and tired. I made us dinner, fed her, fed me, cleaned up, gave her nighttime meds, picked out her clothes for the next day, turned off her television (she plays it so loudly when her hearing aids are broken or lost), settled her in for the night, then put myself to bed. Then got her up early the next morning for her day’s activities, put her in the shower, got her safely out of the shower (I finally bought a shower chair), fed her breakfast, fed my dog and cat breakfast, walked my dog, and saw my mom off, and went to work.
I still see that day, across the desk from the doctor, and think about what we talked about.
Without saying it, I know family members have been waiting to see how long it would take me to put my mom in such a facility. It wouldn't surprise me if they secretly placed bets. One family member told me I should do it. Of course this again was out of concern for my own well-being. I confess I never ever knew how challenging it would be to take care of another human being. For example, on a night in which I was to be picked up at 4:30 AM for a job, my mom pounded on my bedroom door, waking me up because she couldn’t find her remote control. That was at 1:30 AM. I confessed to a neighbor just yesterday that I have all of my mom’s doctors all lined up in order but none (except for dental) for myself.
One uncle is in an assisted living facility. It’s in full lock down. Prior to this pandemic he had already experienced a severe depression period. Severe enough for me to send my mom to Louisiana to meet up with her other siblings and nieces to go check on him. He was fine. He had just experienced a period of continued loss. So many of his friends in the residence had passed away. So many that it became too much for him. This was a year ago.
The Governor of NY does his daily briefings on the well-being of this state giving the numbers for: those newly positive, those newly admitted into hospitals, and those who have permanently left us. The latter includes nursing homes.
Today I am so grateful I struggled through the muckety muck to keep my mom here. This shit is still hard as hell, but nothing compared to what families are experiencing who today have relatives in these residences, and to what the residents themselves must be experiencing.
Just this week a friend of hers thanked me for taking my mom into my care, saying not many would do that. Well, in my thoughts, I was exactly like those "not many." I struggled and still struggle with being a caregiver to my elderly parent. I can't say it enought, this shit is hard as hell. But I have to thank the astronomical cost of assisted living facilities here in the NY state region. Because the prices are out of this world, my mom had to stay with me. The cost kept me out then, and the cost today, due to coronavirus, will keep me out going forward.
I'm just writing to keep from losing it.