Christmas music is playing over our speakers, I have a cinnamon scented candle courtesy of the G burning brightly in the window and a little bug tucked into his bed just a few feet from me. Three years ago today I was in Tucson, AZ with Ho-Ho in the hospital, hours spent in the car driving to and fro, and wracking my brain in the hopes of figuring out how to stop the chaos. I also was searching for my ID so I could buy some beer because let me tell you, a drink at night would have made everything a little better. I know you aren’t supposed to say that, but those were very long days.Very, very long days.
If you haven’t figured it out, Ho-Ho has MS – a disease that affects her both mentally and physically. It is something we as a family have been coping with for over two decades, but she is of course the victim of all of this. Three years ago, things fell apart after the Tucson public aid system removed Ho-Ho from her court-ordered treatment. She was a 5’3″ permed hair ticking time-bomb that exploded with a bang in December 2008. Literally. She threw a lamp through her apartment window because she thought she was trapped. After a few additional incidents at her apartment building, I made the call to have her taken to the hospital where she was admitted for an indefinite stay. Soon after, I pow-wowed with the sisters, flew down to investigate our options and advocate for her within the state legal and health system.
I remember arriving, picking up my rental car and driving directly to the hospital, where I sat for nearly 30 minutes after realizing that I was alone this time. Not to sound dramatic, especially since I have visited my mom in hospitals since I was eight and found it fairly “normal”, but never alone and never with the knowledge that I had to dictate her treatment with the state. It was, as you can imagine, absolutely heart breaking. I brought her bras with the underwire removed, various sundries, make-up …the things anyone needs to maintain some sense of normalcy and dignity in an otherwise chaotic situation.
After a week in the hospital, my mom was discharged to a “step down” facility. I don’t know if you have ever been to such a facility, but you want an advocate working for you because the people who run those places are out of control. Not once but twice I stood in the middle of their office space and refused to move until they distributed PRESCRIBED medications to Ho-Ho. The psychiatrist on-call didn’t “feel comfortable” dispensing her MS drugs. What? That is just wild! How can you expect one’s mental state to improve if you don’t simultaneously treat their physical problems? I can tell you that if was in crapton of pain and couldn’t sleep I would have some major problems coping. Lord, I can’t even function when I have a hangnail.
Mom and I spent the visiting hours addressing Christmas cards and even invited her housemates to join us so they could send a few out of their own. The only activities offered by the facility was watching movies and group therapy. Again, so disappointing. I am not a social worker but it seems fairly obvious to me that if you want to reintroduce people to society after they are stabilized, you should probably provide a little more interaction and intellectual stimulation than watching Lethal Weapon 2 and playing cards with with an incomplete deck (no pun intended).
Between visiting hours, I worked on my grandpa’s 80th birthday scrapbook (impressed? you should be. I scrap booked the hell out of that piece), met with various public aid officials who said my mom made too much money for assistance (BWAHAHAHA) and traveled across Tucson looking for an assisted living facility that could house my mom while we made arrangements for her to move to Chicago. Let me tell you, there are some very rough places out there for folks with limited income. I looked at one facility that had four women to a room – and the main activity of the day appeared to be smoking. I mean, I guess it’s better than chewing terbaccy, but still, not the best environment for a person needing a little extra TLC. Another place reminded me of the scene from Breaking Bad where the two dudes are being held hostage out in the middle of the New Mexican desert – in a one room house lit by a bare bulb and filled with a busted old stove, a TV stuck on one fuzzy channel and a crazed meth head running around with a gun. Maybe it wasn’t that bad but you never know. I do, however, have to compliment the “smoking club” on their mad housekeeping skills as I walked right into a glass door thinking it was open.
After losing it a few times and considering stuffing Ho-Ho into my suitcase, I finally found a company that helps place folks needing assisted living. Linda drove me around we found three facilities I thought my mom would like. She was discharged on Christmas Eve and we took a look at all three where as expected, she was unimpressed. The first facility eventually won out, but we soon changed our minds after I looked at their inspection record (yikes!) and then began a bit of legal battle to get our deposit back (story for another day). The second didn’t work either so she ended up at an old folks home that served our purposes but wasn’t ideal. It was temporary, whatever. Plus they had a row of lazy boys in the living room which, in my opinion, is pretty sweet.
Mr. Swirley was scheduled to fly to Tucson to spend Xmas with us but was snowed in. This turned out to be a blessing as he returned home to find water pouring down through every light fixture in our house, the alarm blaring and our cats cowering under the bed. Our neighbor’s pipe froze and burst causing what we have come to call the Flood of 2008. This is of course different than the Flood of 2009 that occurred two weeks later. It’s not like we had just moved in and the place was completed rehabbed or anything. Poor Mr. Swirley spent Christmas Eve shopvaccing with my dad and ate Christmas breakfast at the Hollywood Diner. Sweet sweet memories
After Christmas, I called my grandpa and asked him to sub in for me for two weeks while I got everything in order for the move. He of course kindly obliged and spent his days sorting through zillions of books, Christmas decorations, oversize belts and hair products. While he was busy being scolded by my mother for throwing away paperclips, we signed her new lease, organized a one way truck rental from Tucson to Chicago and the Ds, Mr. Swirley and I flew down to Ho-Ho’s house to pack her life up into a 17′ truck. In a little over 24 hours we had boxed a ton of blazers donning shoulder pads, donated a ton to Goodwill and scrubbed her two bedroom apartment from top to bottom. The two men drove her belongings up to Chicago while we got her situated in her temporary home, drugged a cat and found a dirty pair of underwear under our hotel bed.
And here we are three years later. As challenging as things were, I realize how blessed (most of the time) we are to have Ho-Ho close and how wonderful she really is to command such love and commitment (sometimes begrudgingly so but commitment nonetheless) from her family. This Christmas she is with family, crocheting, drinking half-and-half and watching Monk with the G. She has a little man who adores her and as miserable as she may make herself out to be from time to time, is thriving and all up in people’s business.
I am not sure why I shared this story. It’s so serious and probably too personal for blogging. But it’s a Christmas story that is worth remembering…if only because we convinced her to give up that damn perm.
|Ho-Ho – Christmas 2011