ETA: Update on the situation HERE
Jenny Trout and DRock did an episode of Roadhouse about getting over bad days, and it touched a chord within me. So much, that I’ve paused the vid to write this insane rant/vent of frustration.
I am a divorced mother of two, one of which has severe ADHD, and medication/therapy/diet change hasn’t nailed it down to being utterly manageable at this point. It’s touch and go. On bad days, he’s utterly destructive. Good days, he’s helpful and friendly. More days are toward the middle, with a touch of bad.
I also live with, and caregive for my grandmother. She has Alzheimer’s. I’ve been here for two and a half years, those years I will never get back, nor make up to my children for putting them in this situation.
One evening in late October 2010, my mother called me. At the time, I lived in a city, in a shitty apartment in a drug-riddled and violent neighborhood, that my ex-husband chose to move to, before walking out on me (pregnant) and our eldest. He didn’t tell me we were moving from the townhouse in the quiet part of town, it just happened. I HATED the new place ever since I first laid eyes on it. There were a couple awesome folks who lived there, but the vast majority of tenants were not the type of people I wanted near my kids. Hardcore drug users, brawlers, gang members.
So when Mom asked if I’d consider relocating back to our rural small town to stay with my grandmother, since my uncle had gotten arrested for selling meth, instead of you know, taking care of gramma, I gave it thought. What would it entail? Cook, clean, give her medication, I’d get the weekends off to do what I want and that was that. Ok, fine. So I agreed.
First month wasn’t bad, except for a couple incidents. Gramma was excited I was staying with her, being that I was the one granddaughter who would come over to bake all the pies for holidays since I was 12, and that stopped when I was 20 and moved 100 miles away. Got married, moved again. Been a long time since we’d seen each other.
My birthday is Nov 5. My bbf (since 3rd grade, because we’re that awesome) and I hung out on the back patio, lit with tube lights. We drank beer, smoked ciggies and discussed our novels and lives. She left, and no more than five minutes later, two police officers open up the back gate and start asking me who I am, who all is in the house, what am I doing here and where is my Uncle McTweaky?
Uh, he’s in jail. Shouldn’t they know that? This is a small town, less than 9 thousand people, and people with a criminal history, like Uncle McTweaky, are always on the police radar.
They told me that they thought the tweaker was conducting business, having a party, because of the tube lights. That he was here. After assuring them who all was in the house, giving them my name and vitals, they left.
On Nov 15, at approx 9:30 pm, someone opened a window, calling my tweaker uncle’s name, hoping to do a drug deal. I freaked the fuck out and screamed I was calling the cops. Wish I had a shotgun or burly dog– I intensely dislike home invasion. Having anxiety issues does not help in that regard, either.
Uncle McTweaky got sent to prison, 18 months.
My mother is one of eight kids; 5 girls, 3 boys. One of my uncles is dead. The other two, well, one’s been in and out of prison the majority of his adult life and the other doesn’t like being around his mother, as she is now.
My mother’s youngest sister lives in town, but she’s a blazing alcoholic, like my deceased grandfather. The other sisters live out of state. Two in Oregon (one has Down’s Syndrome and lives with her older sister. Prior to that, she lived with gramma) and one in Colorado. The out of town sisters help support Gramma financially, as does my mom and an uncle. It was agreed upon when I took this job, that I’d get my weekends off because Aunt Alkie and Uncle Flake would cover for me. That lasted almost a year. And I had to call them to arrange it, rather than it being “scheduled” like I thought. Then it came to the point where I’d call to arrange my day off (usually a day ahead of time, just to be courteous) and I’d get excuses. Major fucking excuses. Constant fucking excuses.
Ends up, my aunt and uncle disliked gramma asking if they knew where their father was and would he be home for dinner? (Grampa died in 1983. I have one memory of him, sitting in a chair next to a huge ashtray on a stand)… This became much more common as the days passed. No, and these two don’t even call their mother.
I slept on the couch for the first seven months of this odyssey. Once Uncle McTweaky had his court date and got sentenced, my uncle and his son helped move out Uncle McTweaky’s stuff from his room so I could have my own space. They moved the boxes and left the furniture– so the furniture I had needed to say in the garage (and later be bitched about).
On more than one occasion, gramma would get up at 3 or 4 am, wander to the kitchen and turn on burners of the gas stove. Only one burner lit. So, she’s tried blowing the house up. Me sleeping on the couch and waking up to the creak of gramma’s walker, that’s what kept the house from filling with gas and catching fire.
She’s also tried eating dishwasher detergent tablets as candy, because it was wrapped in plastic.
Sundowning is a bitch. Don’t know if you ever experienced sundowning, but it is a psychological/neurelogical thing where the person thinks it’s much later than it really is. 6pm? Feels like 10:30pm. So trying to convince one that it’s a bit early to head off to bed becomes a daily thing. The novelty wears off fairly quickly. I thank my training in the Glenn County Theater Company during my formative years helping me master inflection so I don’t sound bitchy when I’m very frustrated. And I get frustrated with little sleep. And no, Virginia, 2am IS NOT the time to be getting up and waking everybody to start the day. That is a near-daily occurrence.
My grandmother’s little sister, would come by once or twice a week to visit. Nov 17, 2012, my grandmother’s youngest and last living sibling passed away from cancer. Gramma doesn’t remember and still tries calling her number to get a hold of her. My great-aunt was the one touchstone my grandmother had of her own generation. Pretty much all her cousins and have passed away. My mother visits everyday after work, and on the weekends, so I can go run errands and do random things. My dad and brother cover me, too, for when I have to run to the store. My out of town aunts call a couple times a week. The In Town siblings… they don’t call, they don’t visit regularly. Holidays and Gramma’s birthday, they put in 15 minutes. I’m serious about that time span, because they don’t want to be around her, answering her questions, listening to her ramble on about a story that didn’t happen the way she explains.
The first year of this, I did for free. Didn’t get paid, shit, it’s my grandmother! Family, ya know?
Then my aunts from out of town came for a visit, arranged for a social worker to assess gramma for assistance and voila– found my self a paid caregiver after the background checks and whatnot.
I am not paid for the 24 hours I’m here, giving “Protective Custody” of gramma. I’m paid a bit above minimum wage for less than 8 hours a day. So I give over 16 hours “free” care to gramma on a near daily basis. That’s saving my grandmother’s children something to the tune of $4000 a month. Yay, me! Right?
I don’t get healthcare from my employer.Because I work more than 40 hours a week, I don’t qualify for medical coverage through the county assistance program– neither do my kids, unless I want to pony up $849/month. Um, no. Most of my income goes to the household and prescriptions/medical appointments for my son. I do not qualify for the therapy sessions, that when I was working for free, I could get. I can’t afford the psychiatrist that went hand-in-hand with therapy. But that’s kind of a moot point, since I stopped taking antidepressants when they triggered a suicidal urge (which thankfully has diminished) I wanted to unleash.
The last assessment the social worker made, I started telling her how gramma has been. I didn’t even really get into it before she said that it’s time for a skilled nursing facility.
I told her that once gramma is placed, I was told that I had to be out of the house lickity-split. The social worker laughed! She asked if it was one of my aunts who said that? Yep. This is where things get way cooler. The family would have to go through the process of eviction. Since I have lived here for more than 2 weeks, it’s considered my legal residence. So I don’t have to worry about getting kicked out (although I have no real desire to stay here. Its just convenient for the time being.) by family wanting to sell the house right off the bat. And by family, I mean my uncle’s wife, the nurse, who wanted to drug gramma with Ativan, and brought over the pills to do so. Same woman who has every gift appraised (not for insurance reasons), the same woman who told her son he’s moving in here whenever he wants because HER name is on the deed… yeah. It was also this woman’s plan to move my Tweaker Uncle back in to watch gramma. This would be the third or fourth time– I don’t remember how many. I just know it ends with him getting arrested for selling meth.
I’m leaving lots of stuff out (mostly family drama, relating to those who don’t see gramma and have no idea how bad she has gotten, because telling someone is one thing. Experienceing it, is another thing altogether.)
My sarcasm has been reprimanded on facebook (I feel special, that finally, random bullshit!)… I will share this, because while it was written right before this last Christmas, it still applies.
That’s me and my family. They won’t and can’t do what I’ve done for the past two and a half years. I’ve been threatened, harassed, had the police called on me, and can’t even take a crap without being paged because I’m out of earshot. FOR REALS. If I want to take a shower, I have to make sure Gramma is asleep. She doesn’t sleep worth shit most days…. every day is a day I have to play by ear. Now, 9 times out of 10, my grandmother doesn’t know who I am. And when I identify myself, she calls me liar. She’s told my aunts that I’m a whore, sleeping around with “all the guys,” (you know what, if I were getting laid, I bet I’d be a hell of a lot chipper than I am now. Just sayin’.) running off and drinking, and that I am most assuredly NOT her granddaughter, I am no way related to her.
I have not been “related” to her for the better part of two years. Especially when we were stuck in a motel room, my kids, gramma and I, for almost 8 weeks, while mold abatement and rebuilding took over her house. That sucked major balls. She never knew where the bathroom was, even though her bed was right next to the door. She never wore Depends, either.
All of gramma’s failings have been laid at my feet by various family members outside of my immediate family. The only ones who have any idea of what I contend with on a daily basis are my parents and brother. For that, I am extremely thankful they are there to help me get through the hardest of days.
For me, to stay sane, it takes three things (plus gardening in the backyard when gramma dozes off for naps).
1) Writing. I’ve been writing since grade school. I didn’t realize it until much later, but writing is my outlet. It is how I cope with the big, nasty world. A dear friend bought me a Valentine’s Day gift of a feather pen and I use the fuck out of it.
2) Tie Dye. When I feel blah, chemicals of a colorful nature brighten my world. I make and sell custom tie dye shirts and dresses. I don’t do it for the money (because if I’m buddies with someone, I do it for cost), but because it’s chemistry and art, mixed with with a little science. Mad Scientist Gloves and Goggle kind of awesome.
3) Silk paint.
I went to art school, but I was the only one there with a strictly-photographic portfolio. I loved photography because I can’t draw well. Dropped out a year later, but learned enough to be okay– as in, one can identify the subject. Discovered silk painting. It’s zen. I love doing it, because it takes concentration and practice. I see some silkpaintings others have done and I am in awe for the photo-realistic rendering they have accomplished.
When I do draw, it looks something like this:
Being creative and gardening. That’s what keeps me sane. Can’t say -happy- as I believe happiness counts as moments, whereas all the rest of the times, people have a baseline rate. High peaks are good times, low peaks, bad times. Goal is to keep things toward the middle. If things are happy all the time, that becomes static. One needs the bad times to even out the good, so people can appreciate the good things that happen.
I highly suggest the PBS documentary, This Emotional Life.
My name is Amanda, and I am a depressive with Borderline Personality Disorder. I have self-harmed before, contemplated suicide, I currently sleep in the same room I was molested in as a child, and yet, I’m still kicking and alive.
I may not be happy all the time, but I have my life.
My creativity is my security blanket. As long as I have that, I’m going to be okay.
Please consider making a living will, so that your loved ones can follow your wishes if you should ever be in a state where you cannot advocate for yourself. Don’t leave them in the dark and don’t put off the inevitable.
My kids know that if I should get forgetful like Gramma-Great, then they need to put me in a home. I do not wish this sort of hell upon anyone.