To the End

When I began this blog 5 years ago, it ended up being a catch-all for whatever slogged through my brain, mostly writing and the difficult journey that was caring for my mom.

After a year+ battle with multiple cancers and the complications of surgery, and a 40+ year battle with mental illness, Mom is finally at peace. I held her hand as she left this world, tearfully reminding her she wasn't alone, that she is loved, and that I would be with her through the end. I'd like to think she heard me. She wasn't conscious that day at all as far as we could tell, but she was gone right after I spoke.

In harder moments in the last few days since she died, I tell myself she's at peace, for perhaps the first time ever. I don't know where I fall in terms of belief when it comes right down to it, whether my mom is reunited with her mother and grandparents in a brilliant utopia or has simply ceased to exist. Either way, she's no longer tormented by the horrors and aftershocks of a nightmarish childhood that harmed her in ways she couldn't heal from. I hope (and regardless of my uncertainty I do pray every night) for her sake there is something better where I'll see her again someday, where I can know her as she truly is.

I am left with a silent paranoia that I can't remember enough good times with her. I know there were certainly plenty in my childhood, and though her illness tried it's hardest to eliminate them, there were good times woven in my adult years with her as well. I've felt this panic before, after the death of a loved one, that I couldn't remember specific details about them or my relationship with them.

On the other side of that fear is a bit of clarity. What I struggled with for so many years, was not truly my mother, but the "demons" of her illness trying to take away those of us who meant the most to her. I will never be known as the most patient of people, but my heart is fierce and I know I fought endless battles to hang onto her as long as I could manage. The war is over, but it was a worthy one.

At the moment, aside from a ridiculously high fever that's swept in without warning, I'm left with the perplexing bit of things. Life keeps on going, regardless of how empty or fragile you feel. Life is both exactly the same but completely different, all existing at the same time. My father and I go through her things - we've already made a donation of extra medical items to those who most need them through her hospice. I've written and had published her obituary - the writing was agonizing, the reading of the exact same sentences published was like sucker punch to the gut. My home is still. Her absence is strangely palpable to the energy of the house. I did mention the high fever, yes? Even money on her absence or the fever being the cause.

I have eaten a verifiable-y insane quantity of chocolate in the last week, completely unrelated to Valentine's Day. I could do some serious damage to a variety of baked goods at this point, just sayin'. I'm from hearty Midwestern stock and Southern by marriage - comfort food is the backbone of funerals and grief.

There is, truth be told, a new reality to adjust to, and that is for the first time in my life, my life is sort of my own. My mom and her illness have been so deeply etched on my psyche, completely self-inflicted and unbeknownst to my family, that many decisions I made had to be balanced against what I'd need to do about or for my mom. As I process the grief, as I wobble between days wanting to curl up in bed and sleep from the sheer exhaustion of the last year and days wanting to spend hours writing or exploring the world, I'll be getting to know myself in some capacity. I think catching up on shows & movies I've missed and zoning the hell out is the first order of business.

But, there are still things to get done. Clothing donations to make. Her de facto hospital room to change back into a spare room or office. Her ashes and death certificates to pick up. A celebration of life to set up (flowers, food, memorial cards, location). Etc, etc, etc. Zoning out for a bit sounds pretty darn good right about now.

My momma is gone. All I want is one more afternoon with her from when I was about 9, just her and I in the car while she gets us a sandwich and an orange soda while I tell her about my day at school. Or a morning when I was 3 and I'd snuggle up with her on the couch to watch The Price Is Right. Or a Saturday night when I was 11 and I'd feel so grown up helping her perm or color her hair in the dining room.

I love you, Mom.

Made possible by

My day was made possible by my TENS unit and my mom's psychiatrist.

A TENS unit, for those of you not in the know, is a magical little device that shocks the living hell out of your nerves to ease pain. That's a little dramatic, but that's the kind of mood I'm in so I'm going with it.

My electrode pads, those little white patches in the picture, don't typically stray from my spine. The basic idea of the unit is a current travels across the skin and along nerves to disrupt pain signals. The unit can also help increase your body's production of endorphins. Provided you don't crank that bad boy up to full strength immediately to imitate getting kicked by a mule at the same time you lick an electric fence, it doesn't hurt. It is, quite frankly, a miracle in my opinion. Long time readers may remember I have an issue or two I've inherited from my parents where the best solutions doctors offer are those nifty drugs advertised on tv as may cause cancer, tuberculosis or death.

And to those who have the delight of intense menstrual cramping? Give it a go. Seriously. Minimize your time in the fetal position of agony - unless that's your thing. Sciatica? Migraines? Chronic pain? It can help, though as with anything else, results vary. For me so far, it's worked like a champ. And it's a relatively inexpensive purchase from everyone's favorite on-line retailer.

My mother has been on a manic-y and hallucination-filled ride of late. She picks apart her food at every meal to look for things hidden within. Last week she claimed someone had etched a message on a chicken bone. She thought her chair was full of ants, but sat there anyway taking on imaginary bites. After a meal out with my father on Valentine's Day and a generally pleasant day, she ended February 14th asking my father if he wanted a divorce so he could be free of her. And she sees pencil shavings in ice cubes at the moment, so hold the ice for the time being. I won't even begin to explain the debacle that took place when she asked for hot chocolate and believed we'd given her something else.

"She claims that's what she gave me." This is what she told my father about 30 minutes in to what became a night-long event.

So, I was delighted when the psychiatrist's office moved her appointment up. Because these day's it's a constant weighing of each situation to decide if she needs to be seen ASAP or this is just the new normal.

He makes it look effortless.

In addition to adjusting Mom's medication this time (for about the 4th or 5th time in less than a year), the doctor gave me her personal cell phone number to keep her updated more easily.

Well that's gotta be a good sign. Right?

Yeah, I didn't think so either.

It's a difficult step to add another new medication to my mom's list and not one her doctor took lightly. Decades of being on heavy-duty anti-psychotics, some for far longer than is now recommended, have wrecked some of my mom's organs. It limits what she can take now. Gold standards in treatment have to be avoided because they would kill her.

So we add a new, fast acting prescription and wait and see if it helps control the rampant visual & tactile hallucinations, delusions and off the charts paranoia.

Pay the Toll

There is a price to be paid in my house for when I'm happy or I've done something for myself. Because it really pisses off my mother, the person who embodies cutting off anything you enjoy as a form of self-punishment. Or for shits and giggles. Who can really say?

It's taken a long time for me to figure out I do the same damn thing and try to stem the eruptions of guilt that occur when I take 5 minutes to myself once in a while.

And if you think I'm exaggerating or being over-dramatic, the person writing this had to have a psychological professional tell my parents to stop smothering me by requiring my presence in their lives constantly as a teenager. I think they took my teenage leave-me-the-fuck-alone-to-read-or-talk-to-friends as a sign they'd failed to make their home a better one than they'd had growing up. No, just teenage introverting and hard crushing over guys I'd never date, but thanks for making it about you.

Which is sort of the root of the matter with my mother. My life has been melted down to the basic idea that she should be the center of my life. This exists both internal and external of her mental illness, and so I've decided at this point it's really just an issue that exists within her as a person and not specifically because she happens to have a serious mental illness. Sort of moving it into the category of "regular" passive aggressive mothers everywhere. Just spicier.

So when I have friends? She's jealous. When I leave the house? I'm partying on a yacht instead of sweating my ass off lugging groceries into the back of a vehicle in 100% humidity in the blazing sun. When I leave the house to see friends? Guaranteed meltdown. And yesterday was no different. Uncaring hussy that I was, I didn't go out just once yesterday. Oh no. 3 times, once just one-on-one with my husband for an errand, I had the audacity to get in my car and enjoy myself. Nerdy word play, filthy jokes and all. She'd have a stroke if she knew I had a donut with my coffee. Because where was hers?!

And I refused to engage in the reindeer games when I returned.

She announced that she'd been having trouble for days with her mind, but hadn't wanted to tell us. I know my mother's tells. She was bullshitting me. But calmly, I played along and asked for details. After cutting back the underbrush of word games (her favorite way to stall for more ideas) and just plain moose caca, her explanation amounted to whenever I left the house, she got confused and so I shouldn't leave the house anymore without her. As long as she's with me, she doesn't have any trouble.

This is the woman who when she's been committed to psychiatric wards ends up running the asylum by the time she's allowed to leave. She's fucking brilliant at manipulation. One issue she has with me is I know her. Even at her most cunning, she's got patterns. She's got tells. Tells that are on full display when she's up to something. At least to me.

I listened to everything she had to say, asked if she was having trouble sleeping and sent her to bed. Today she has followed me around every inch of the house whenever I'm not in my bedroom or the bathroom. She sat and stared at me for at least 30 minutes as I was at my desk . A little later, she spent an hour in the next room putting a puzzle together and making random comments every 20 minutes.

As always when discussing situations with my mother, I get that she's ill. I get that she's declining. And I get, as I have my entire life, that some of goes on is completely and totally out of her control. Some days are just wilder rides than others.

Win, lose or catch 'em all

I'm tired.

This is the third time I've started a post that way this week. Fingers crossed, the third time will take.

Mom's had a difficult week. She came unglued a few hours after reading a chapter in her light-hearted cozy Christmas mystery novel I found for her at the library, convinced I was trying to hide snakes in her bed and sticks in her meatloaf. None of those things happened in the book, for the record. As I refer to it, she adds 2 to purple and gets fish. Her brain leaps around and makes connections fueled  by paranoia. I got her calmed down, quicker than I expected that night, but it was the second night in the week she had a complete meltdown. I got her settled in bed for the night, triple checked with her for snakes, and offered to put something on the television in her room to watch to help occupy her brain.

If a mild mannered mystery about a Christmas pageant in a small town triggers her, then just imagine how long it took me to find something relatively safe for her to watch. No cartoons or anything magical or out of reality. Nothing sad or religious. Absolutely nothing with the slightest hint of suspense or violence. Nothing with story lines that involve any kind of spying/covert ops/secret societies/conspiracy theories/etc. The list goes on. She specifically asked for nothing that involved the holidays because it would make her think about the book.

I settled on the PG-rated large, ethnic marriage movie. God bless Nia Vardalos. She'll never know how her movie, beloved by so many (even my cranky older folks), soothed the paranoid twitch in my mom that night. Well, after over an hour of me talking her through it and then the just-in-case medicine prescribed by her doctor. Still, it kept her mind occupied.

It's starting to look like this less stable, more easily upset version of my mother may be here to stay. Her doctor and I are both kind of leaning that way.

I'm not entirely sure if I should tackle what happened at the end of the week with her, under the banner of TMI. So much TMI. Sufficed to say, if you know someone with an issue with constipation, Aldi's brand prune juice works as well as the prescription strength stuff gastroenterologists give patients to clean out their systems before a colonoscopy. Also, adult diapers are not leakproof in that department. Oh, and my parents need a new bathmat. And the funny videos of the dads' retching while changing a baby's diaper? My dad makes that noise now. And I almost peed my pants laughing when he did. The man who changed our cloth diapers and cleaned them, overcome by the whole thing.

You have got to laugh. You have to. Crying doesn't make the mopping go any faster.

And then there's this pokémon thing. This fricking pokémon thing. Want to play with friends? I can't connect. Want to go for a walk? I can't login. In the middle of restocking game supplies (for free)? Server takes a dive. And then I noticed a friend of mine who is also testing out the game was able to catch something not long after I got booted from the server for several hours. I did a little digging. Okay, googling. And I discovered users who registered the way I did, creating a trainer account and NOT using their Google credentials, are having a much more difficult time with their game access taking a dive.

As I bitched to my husband after being locked out of my account this afternoon (again), he suggested I create a separate Google account for gaming credentials. Separate password, blah blah blah, so that if hackers did go after accounts or personal info, there's nothing of importance there. Well shit. Where was that suggestion a week ago? With a literal middle finger at the "sorry, we're working on restoring your access as soon as we can" message on the trainer account webpage, I set up a gaming email, loaded up the app and was creating an avatar in the blink of an eye. Son of a pus-filled shrew, not the slightest hesitation or issue. And of course, all the freaking critters I collected over the last week and the eggs incubating are stuck in my original account if I can ever get in it again. I had even hatched a ghost pokémon and caught almost all of my favorites. But this new account? I started off with a Pikachu. Which might make up for all the aggravation. Because, I mean, come on. It's Pikachu.

Caregivers Anonymous

A few weeks ago I vented wrote a post about being a stay-at-home caregiver that I ended up scrapping. It was defensive and overall negative in tone and in the end not what I wanted to send out into the world.

People are judgmental. It feels hardwired into our society, a kind of self-soothing defense mechanism for some. When you are, by all appearances, a fully functioning adult living in the modern world, if you are not fitting into a particular idea - be it size, race, religion, gender, employment, sexual orientation, child-bearing status, etc - people let you know. And if you hit several boxes that go against perceived 'norms', hang on for dear life.

Last week, when things felt a little meltdown-y in my personal space, I was at the pharmacy for what felt like hours trying to getting something straightened out about a prescription. The pharmacy team at my pharmacy are my own personal angels and go above and beyond to help out when doctor's offices, insurance companies and suppliers are an issue. (That being said, it can be discouraging to have spent so much time at a pharmacy that you get to know each other well. Also? I just spend way too much time there. It's exhausting.) While waiting for the problematic prescription to finally be filled, one of the staff asked me if I was off work that day. Remembering my caregiver post-that-wasn't, I paused and said this is my job. I got a puzzled look from everyone behind the counter and instantly a defensive smirk twisted my lips. I explained I don't work outside of the house (and fought the urge to say 'anymore', as though to somehow prove my worth) and that I take care of my older folks.

In response, a deflated expression and a neutral, "That's a full time job."

You have no idea. Literally, no idea. These people who fill my mom's multitude of anti-psychotics... they don't know that today I talked my mom out of suggesting to my dad that he should divorce her because she's got too many problems and he should be able to lead a happier life. They don't know what it takes to get her to bathe, eat properly, just live. They don't know that she went so far out into the galaxy two nights ago and was so hysterical, new medicine be damned, that I wasn't sure I'd be able to calm her down.

I have found that the majority of people who don't have to hide some level of distaste at my answer are the ones who have had to or currently provide care for someone. I wonder too, if some of the responses are because my taking care of my parents brings up an uncomfortable topic. Parents aging. Parents being sick. Parents dying. Death in general.

Tomorrow, I will take my dad in for the first of two surgeries. He's all but climbing the walls with anxiety. And I may have to order a tranq gun from a zoo if my mom worries about it much more. My dad doesn't like to include himself in my 'caregiving' umbrella, and he can think that all he likes, but I know better. I re-wrote his pre-op instructions so he could follow what he had to do the past few days easier. He still skipped around the page and took medications out of order or missed something. He gets aggravated that I checked, but I caught and corrected the issue. His idea of making dinner if I'm not around is to cook meat. No vegetables. No sides. Just meat. The man who gave me hell for wasting electricity by watching music videos instead of listening to the radio now leaves the television and lights on in every room he's goes through during the day.

The funny thing is, if I had been able to have children, a lot of the looks and comments I get about being a caregiver would be replaced in the working mom/stay-at-home mom wars. When I tell certain women that I have news or something in my life has changed, I'm asked one of two questions. Did I get a job (finally)? or Am I having a baby (also, finally)?

So how do you define yourself when society dictates that you must have value by virtue of your career or your family? How do you ignore the scoffs and derision from the people judging you? Even your own family perhaps. How do you stifle anger or hurt when 'friends' or relatives make comments about all the free time you must have?

By owning who you are. By accepting you're doing what needs to be done. By not seeking validation & accepting none is needed. By realizing that every person has their own issues and you don't need to be sucked into their negativity. It's as simple and as difficult as that. It's a process, as everything else in life is.

In the grand scheme of what's going on in the world, this is not something that keeps me up at night. It's like a gnat, irritating and in your face at times, but temporary. Then again, if you can work on that inner peace I keep seeing lovely brochures for, maybe you can send out more peace and love in the world.