Posts Tagged ‘sisters’
Ka’s Birthday
Tomorrow is Ka’s birthday. I sent card. Unlike other sister situations, I can’t call and wish her a happy birthday since she doesn’t answer her phone. I was going to send flowers but I don’t know if she’ll be home to take the delivery and her living situation doesn’t lend itself to having one of her neighbors take the flowers if she’s not home.
We’re in the process of trying to solve the credit card problems. The JPMorgan Chase people weren’t much help. First the call center person didn’t understand what a guardian was and didn’t have a supervisor I could talk to. Then when we go another person on the phone, their response was, send us a letter which we did.
We got the response to the letter. It is basically asking us to work out a payment plan. They also don’t understand that I’m her guardian not the person responsible for the bill. So they sent a letter asking us to work out a plan. Given that the bills are up around $15,000 there is no way I am paying for any of this especially since if the bank had done even the most cursory of searches they would have seen that Ka’s credit and her $12,000 income didn’t justify a credit card with a limit that was above her annual income.
My guess is that now that Ka isn’t getting a bill she will simply forget about all of this.
So we press on.
Happy Birthday Ka,
Love, Cupcake
They Must Have ESP
I’m driving in the car through the aging oaks with the spanish moss hanging down from them. The weather is great, the sun is glowing, I’m rocking to some tunes on the IPod blasting through the speakers of my fine car audio system. This is blissful after a long cold winter.
Then, the phone rings. The first thing this phone does is cut off my tunes since it’s feeding through the radio. Then it presents me with “The Voice”. The Voice is Ka’s mental health counselor, or at least the lead one. The Voice and I seem to have found a common ground where I know longer want to shake the living daylights out of her. I am not in the mood for The Voice.
The Voice calls because she wants to share some insight. First, Ka has thrown away her phone but found a pay phone from which she can make calls. The throwing away the phone part isn’t new. The pay phone part is. How industrious is this? Ka went out and probably found the last pay phone on the planet earth. I still don’t believe that she threw the phone away and am torn about whether I should still pay for it incase there is an emergency.
Then the Voice tells me we kind of have a meeting on April 20th with Ka’s new doctor but maybe not. It’s kind of at 2pm but since Ka shows up at incovenient times and often doesn’t let anyone know what’s going on, we should plan accordingly. I inquire, “what does that mean?” “Well sometimes she shows up an hour or so early.” Ok, I’m now supposed to leave work at noon, drive to the most depressing waiting room on earth, I’ve been to waiting rooms in police stations that are nicer, and wait for Ka to show up.
Then the Voice adds, “I also should warn you, you won’t like this new doctor. He’s a little old, he’s a little bit full of himself, and a the first meeting with Ka, he wagged his finger at her and told her she’d been a bad girl.” Now my blood pressure is rising. “I can’t imagine you let him talk to you that way.” So boy, here we go. Ka, however, is still getting her shots.
Then the subject of my Tom Cruise, she’ll snap out of it brother comes up. I raises the subject just to get it out of the way. Listen Voice, I want to let you guys know what’s going on with my brother. I explained that his appearing on the scene right now and telling Ka that all this illness is just not real would be bad for our game plan. I also tell them that I know Ka has been mailing address change notices so that is she wanted to him and his lovely wife the wicked witch of the East to know where she is.
Then comes the fun. The Voice tells me that the Wicked Witch called crying the first time. Very upset, had to know what was going on. Why can’t they tell her, she’s Ka’s sister in law. Blah, Blah, Blah. Second set of calls a week later. Lots of yelling. Then the Voice drops the big one. She tells me that the Wicked Witch told her that we weren’t answering any of her phone calls. Is this a surprise? No. I reassure The Voice that we haven’t had any phone calls. I explain that all through the eviction, trying to get Ka some medication fiasco that I kept them informed and enlisted their support to help Ka understand what’s at stake here, that she might wind up in a homeless shelter. But no, no help, not support. So I tell The Voice that if my brother had called I would have given him the information. I would have given him the address, the phone number, and told him what’s going on.
The Voice sounded sympathetic, it was a professional sympathetic however. How sorry she felt that I have such a dysfunctional family. She laughed at the Tom Cruise stuff and we discussed the likelihood that my brother would jump up on the couch. Couches are good mental illness metaphors.
So, we signed off agreeing that she would keep in touch about the pending meeting with the doctor and the other mental health events of the day. We wished each other a good holiday and that was that.
I am convinced these guys have ESP. Is there a reason they always call me right as I leave for vacation? When I am relaxed and enjoying myself.
Maybe this stuff that Ka says about these guys reading her brain waves is true.
Making an aluminum foil hat…
Cupcake McQueen
A Break and a Phone Call
We decided we needed a break for the Easter holiday. We packed the car and drove 10 hours to our favorite beach location, got two rooms that face the ocean and parked in a beach chair for hours. My kids showed up last night so we can have a nice family gathering and do nothing in particular.
Yesterday the phone rang. It was Big Lou, Ka’s ex-husband. Big-Lou called to wish us a happy Easter and to check in. One of the good things that has happened in all this was the reconnection with Big Lou. Ka married very young. She was 19, Big Lou was two years older. They didn’t stay married long. I think he got caught in the cross fire of her evolving mental illness. After 30 years, he called out of the blue. He wanted to call Ka and just talk to her. So here we are, Cupcake, Big Lou and Ka, all in our 50s, all still kind of trying to figure it all out.
The good part about Big Lou is that he still makes me laugh, he still remembers when Ka wasn’t ill, when we all used to run around and have fun. He remembers when we were all young and loved each other in a totally different way than today, in a more open and uncomplicated way; when we all just wanted to go to the diner, take a ride down the shore, get paid, and have fun.
Big Lou made me remember when things were normal. That’s why I still love Big Lou.
Happy Easter.
Cupcake McQueen
Where’s Ka
I bought Ka a cell phone. I’ve called her for two days now. No answer. Is it because she doesn’t know how to use it or because she turned it off.
I need to know if she got her shot. I am afraid she may not have taken the shot.
I don’t want things to deteriorate, I want this to work. I want to not worry.
Anxious,
Cupcake McQueen
Shot Day
Ka was supposed to go to the clinic today to have her first Risperdal consta injection since she has been out of the hospital. When I saw Ka over the weekend she was telling me about how they give her the shot in her butt and it hurts a little afterwards. She seems to have the shot on her schedule. Since she’s very organized right now, I remain hopeful that this will work for a while.
Since no one called me, no mental health people, no lawyers, no doctors, I’m assuming she went and had her shot. But sometimes the adage that no news is good news doesn’t work in this situation so I’ll have to follow up tomorrow and make sure Ka got her meds.
I hope she realizes that her ability to stay in the apartment depends on her getting this shot every two weeks.
I’ll find out tomorrow.
Mr. Ayers
This evening I watched the amazing story of Mr. Ayers and Mr. Lopez on 60 Minutes. Mr. Ayers has schizophrenia, is homeless and is a magnificent musician. Mr. Lopez is his friend. Mr. Ayer’s was homeless when he met Mr. Lopez who helped him with his music and became his friend.
Mr. Ayers has an older sister sister. She shared some of how she felt about her brother and how the family dealt with his illness. She talked about how she takes care of her brother. I was touched by their story and the way the story showed how someone with schizophrenia can be brilliant inspite of their illness but how devastating the illness is none the less.
The story touched on how Mr. Ayer’s experience with treatments many years ago has turned him against taking new treatments. It makes me think of how Ka doesn’t want to take her medications because of the fear of side effects.
During their relationship Mr. Lopez helped Mr. Ayers find housing with a stays a group that provides housing for people with mental illness. He how stays in a shelter at night. Another story about the challenges facing people with mental illness.
Mr. Lopez wrote a book about their relationship called, “The Soloist.” I will have to read it.
It was a hopeful end to a hopeful weekend.
Cupcake McQueen.
Relaxing Finally
We took the last bit of Ka’s furniture to her. I had several small pieces in my house for a long time. She didn’t have room for them in her townhouse. She was happy to see her own things. The look on her face when we brought everything in was worth the effort to get all this stuff up the stairs. Today we brought her big desk and her chair. She was so happy to have it back in her little apartment.
Yesterday I bought her a new cell phone. The “Knack” has big buttons, it’s easy to use, and has the ICE (In Case of Emergency) button right on the front. My daughter programmed all the phone numbers in. Whether she’ll actually use the phone remains to be seen but at least I feel like she has a phone. She even liked the vintage phone ring tone.
I think I might be able to relax for a while. Things seem to be ok for now. I’ll take it one day at a time but at least I don’t have to worry that she is going to be homeless. I might actually be able to get some sleep.
Finally Relaxing – Cupcake McQueen
Mom’s Birthday
Today would have been Mom’s 79th birthday. She passed in 1996. I still have times when I go to reach for the phone because I want to talk to her about what’ going on. I have actually lifted the receiver and stopped when I realized she wasn’t here anymore. It’s not a sad thing. It’s confirmation of how much we loved each other or how close we were.
Ka was in the hospital when she passed. She had been in the hospital for almost a year by then. It was a very difficult time. Mom had been sick for quite a while. She was a heavy smoker and wound up with COPD and emphysema. She was living with me when she died. She was too sick to travel to see Ka in the hospital, it was too far away and she was on oxygen and unlike today’s oxygen equipment, we couldn’t move all the equipment around or be away long enough to make the trip to the hospital which was 235 miles away.
She didn’t understand mental illness let alone how Ka could have problems like thinking she was getting messages from the newspaper. She thought Ka would just snap out of it. She thought this was a phase, a bid for attention. The whole process of having Ka evicted was awful for her. She couldn’t believe that this is what you had to do to get help for your child. She never bought the stuff about how the family had no role, after all this was her kid. Why couldn’t we help.
When Ka got ill, she started having problems remembering how thing really happened. When Ka was little Mom fell while she was holding Ka. It was dark, Ka had fallen asleep in the car on the return from a family event. Rather than wake Ka up, Mom tried to carry her up the flight of stairs to get into the house. She tripped and fell and dropped Ka. My parents rushed Ka to the hospital where they checked to see if she had hurt her head (she hadn’t); and put two stitches in a cut on her forehead. Today a butterfly bandage would have done the trick but that was then. Mom felt so guilty about having fell. Years later you could see the angst on her face when she talked about it.
As Ka became ill especially when she was really delusional and not taking her meds, she used retell the story. Her version was that Mom threw her down the steps and split her skull open. You can imagine how that made Mom feel. She’s try to correct Ka and tell her how much she loved her and that it was an accident. Ka was set in her beliefs. There was no changing her beliefs.
When Mom died she was so sad that Ka was in the hospital, that she couldn’t come to see her at the end. Ka was her special middle kid, the one who she doted on. (I have not complaints, we had a great relationship too.) It was hard to watch her long for her daughter, especially the one we all knew before she got sick at the end of her life.
I hope that she is watching what has been going on and knows we are all trying to do the best we can for Ka. I think Ka is ok for now.
Happy Birthday Mom.
Love, Cupcake
Looking Out the Window
On the way to work today the gravity of everything that has been going on for the last 18 months hit me.
Ka was in the hospital twice with really bad run ups before the “Mobile Crisis Team” could mobilize itself to get something done. Tremendous efforts spent fighting her eviction until we could be really confident that she would actually have a place to go that wasn’t a shelter. Giving in to the eviction to get her into the hospital and keeping my fingers crossed that the housing people will live up to their commitments. The stress of worrying about someone you love winding up homeless. The reality of the cost of all this – housing, lawyers, very expensive drugs, doctors, days off work, and more.
The visit to Ka’s apartment was good. She seemed happy. She was going to her doctor’s appointments. She seems to understand the gravity of her situation, that she can’t get evicted again, that she needs to take her drugs. I think I should be happy but I’ve let myself believe things were ok before only to be crushed when I was back on the schizophrenia care giver treadmill.
So, I’m driving to work and I felt overwhelmed and exhausted. I think all this stuff just hit me. I almost pulled the car over as the wave of whatever this was came over me. I was amazed that I had such an extreme physical reaction. Stress is a much more powerful force than any of us realize
I get my act together and continue on my journey to the office. I noticed it was almost spring. My mother’s birthday is Saturday, she always loved he flowers.
I grab the mandatory morning latte. As I’m unloading my briefcase and getting ready to roll for the day, I look out the window. The theater across the street put up the posters for its newest production. One Flew Over the Cuckoos Nest starts next week. There on the poster is the “nurse” with the strange and wacky face staring at me from across the street. I was taken by the vivid colors of the poster. I can finally see the technicolor world around me again. Life is very amusing sometimes. I couldn’t help but smile.
Best Regards,
Cupcake McQueen
Mad As a Hatter 