Jacqui (jacqui) wrote,

Mom At Easter, Careless Caregivers, Passing Up On Artfest : (

mom hospital 3-23-08

Hi Everyone,

Mom is still in the hospital. She has pneumonia and COPD as well as diabetes and congestive heart failure, and this on top of the cancer and the brain tumour. And she's so sweet still has that twinkle in her eye the most beautiful smile and that wicked sense of humor. It's heartbreaking.

I don't know when she'll get out. I pray she'll get out. Every day I talk to about three different doctors and nurses. Each day we hope she'll get well enough to come home but then her heart rate will set off alarms and bring people running into her room or her blood sugar will be sky high. And the cough, the cough that won't stop and turns her face purple. When she can't breathe it's terrifying, and she's so helpless, and I can't do anything but hold her hand and try to help her calm down and breathe. She's always been such a "good little soldier." I felt so bad for talking her into letting them suction her airway yesterday, because I knew it was going to hurt and frighten her, but they really needed to do it.

Her new caregiver Susan sits by her side all day while I run around doing her errands and organizing things for her before coming in to visit. Today I finally got a geriatric psychiatrist to come in to evaluate her. Her primary doctor has been trying to get her to go to a psychiatrist for her anxiety and OCD for years and years but she just gets offended and says, "I'm not crazy." She doesn't understand psychiatry or therapy. She thinks that having to seek this kind of help is a kind of giving in, admitting to madness. So there's no way I will ever get her to go in to see a psychiatrist, but the one benefit of having her stuck in the hospital is that I can finally get one to come see her. Woo hoo, antidepressants and anti-anxiety meds here we come.

Now, finally, after years of this stress she is going to get the medication that she needs to help calm her down and relieve her anxiety. And as an added side benefit this will make life easier for all of us. Believe me, it can be exhausting dealing with a Mama who worries herself sick all the time. She literally worries herself sick, and honestly, she worries us sick as well. She tends to perseverate on negative things and constantly focuses on worst case scenarios. All my life we have been on the verge of one crisis or another. First it was the communists, then when The Russians weren't going to somehow infiltrate our government (through Jews using the media) seize our homes, and force us all to live in our closets, (I am not kidding you about this), then anyone that lived in the poorer parts of Los Angeles were going to riot and take our homes by storm. My Father would regularly take all of his guns out of his gun cabinet and clean them in front of me because he had to keep them in good working order for the day when he would need to defend our home with them.

Now she worries that I will give all of her hard earned money away and neglect to take care of my own son, ending up homeless, wandering the streets of Los Angeles with a shopping card filled with cats. She has to plan for every eventuality, figure it all out from every angle, saving every nickel for this sad paranoid fantasy, without every seeing how her having hung on so tight to all of this control of money is the very thing that caused me to be so generous in the first place. Seeing her refuse to tip a valet parker, or a waiter more than ten percent because the bill was too expensive, while buying seven hundred dollar shoes, is enough to make anyone want to stuff hundred dollar bills into strangers pockets. I don't need to have seen Pay It Forward or watch Oprah's Big Give to be the kind of person who wants to do this. I just need to be the daughter of well meaning, hard working, but very paranoid parents who lived through The Great Depression and WWII. And I don't fault them. I admire them. But I get more out of giving than I do from receiving, it fills my life with joy, and it is possible to be generous without being foolhardy at the same time.

Getting back to my Mother's psychiatric needs for a moment, there is also this incessant need that she has for us to constantly rearrange everything around her because she can't get up to do it herself, and everything has to precise, it all has to be just so. She seriously cannot handle any kind of disorder, none at all, everything has to be neat and tidy, perfect all the time, or she'll work herself up into a frenzy. And she cannot let go of whatever it is she is focused on until someone, usually me, rearranges whatever that thing is that is bothering her. Picture frames have to be hung and rehung, lamps, vases, knick knacks moved. Beds remade, blankets folded, clothes arranged by color and season. If there is any kind of clutter she gets frustrated, irritated, then angry, and her heart rate goes up.

I mean there she was at home slumped over in a chair with a raging fever, and she's making us move plants and statues on her mantle piece -- a quarter of an inch to the left, then back to the right, then over to the left and rotate. It's been like this my whole life, but when she was healthier she could at least do it herself. Before the macular degeneration she was always imagining that tiny little specs on the carpet or floor were bugs, little stray pieces of lint had to be picked up instantly, no matter how much you might be carrying or how hurried you might be.

She barely gets through asking you to do one thing before she's angry that you aren't doing the next. I'll have to stop, show her how full my hands are, explain that I am doing whatever it is she has just asked me to do, (screw in a light bulb, change a battery, look up a television show, call someone, whatever), and then ask her which thing she would like me to do first because I can't do five things at once. Then she'll give me a naughty teasing little look and say, "Why can't you do five things at once?" Oh Mom, what will I ever do without you?

beau hospital 3-24-08 easter

Beau went to the hospital on Easter to visit her and he brought one of his guitars so he could play for her. I thought that was so sweet of him. He went through his repertoire and I joined in with him on the songs I know. That was a sweet moment.

We gave about a dozen Pinkberry frozen yogurts with fruit to the nurses to thank them for looking after my Mom, and I took a big Easter cake down to the pediatric floor because I feel so sorry for everyone there, the kids, their families, and all of the staff. That can't be easy. There are a couple of kids who have been there for a year waiting for organ transplants. So sad.

All I really want is for my Mother to be as happy and comfortable as possible for the remainder of her life. You know, quality of life while you have life. I don't want her to have to keep worrying about Beau and me and money. All she ever thinks about is money and she really doesn't have to. We are all going to be fine. I just want however much time she has left to be spent as peacefully and happily as possible.

Her latest obsession is that I will buy a forty acre ranch and put elephants on it. I don't know where she got this idea from but she keeps mentioning it. Of course once she said it I thought, "Hmm... elephants..."

Mom's last room mate was a woman born in Oahu who has had a donor heart for the last sixteen years. She has a large family and they're all Hawaiian. Just being around them made me happy. They way they speak, with the sound going up at the end of every sentence, saying, "Yeah?," and "Bruddah," and, "Auntie." I love Hawaii and Hawaiian people and their culture so much. I really miss it in a way that makes my heart ache whenever we've been away too long. My soul is never more at peace, I never feel more at ease, or feel as if I am really truly home, as much as I do when we're there.

Of course this is the time of year when everyone around our neighborhood goes to Hawaii. It makes it so much nicer here. There is a seriously noticeable difference in the amount of traffic. Just the other day I found myself thinking, "What's going on? This can't be right," because I was able to drive home without having to wait in long lines of cars filled with pissed off honking people. Now I know it's because all of the kids are out of school and everyone packs up and leaves. I really like it this way. It reminds me of LA in the old days, so much calmer.

My Mom's current room mate is a pretty young Mormon with a devoted husband. He's so sweet to her. She's had heart troubles all of her life. She's had four surgeries and is on so many medications. Poor little lamb. I love Mormons, they're such good solid family-minded people, but I worry that if I befriend any of them that the next thing I know there will be several young people in suits knocking on my door. While I have tremendous respect for anyone who lives a life connected to a higher spiritual being I'm happy with my own religion. It works for me.

Beau and his friends are in the next room playing Rock Band. I can hear the steady tapping of the drums. Cordelia is sitting on my lap and Asta is snoring beside me. I've been doing really well finding homes for rescued kitties at my friend's pet store. Although the drama there is insane, seriously, insane.

Sadly I have to give up my ticket to Artfest. Oh Artfest, what a loss. I'm going to try to find someone to donate it to, rather than sell it. It was so hard to get. I have great classes with amazingly talented super well respected teachers, all published authors, and I paid to stay in the dorms. I have a private room, and all my meals are paid for. I can't tell you how much I have been looking forward to this. It was going to be a kind of birthday present to myself, (March 29.)

It's so tough to get in, even harder to get a place to stay, and the classes, well, forget it, everyone wants the same teachers, and I just really lucked out. I've been so looking forward to meeting and working with all of these wonderful artists. I've been dreaming about meeting these amazing women, (and men), whose work I have admired and been inspired by for so long. When I told Beau how sad I was that I wasn't going to be getting to sit on the beach working on my journal by the light of a bonfire with other like minded artists he laughed at me. He said, "Mom, that sounds so... well... girlie." Great. Why couldn't I have a daughter too?

One of the best things about Artfest, (Well, can you really pick just one?) are the art trades. Almost everyone makes about a hundred individual pieces of artwork centered around the annual them and they exchange them with each other, so when you leave, you're coming home with not only all of the art you've made in your classes, and anything you may have bought, but seventy-five unique mementos to remind you of all of the many wonderful people you've met.

The theme this year is centered around a walk in the woods. I've been collecting forest and particularly owl-related antique and vintage buttons, (I cornered the eBay market for a good time there on deer, acorns, owls, pine trees, gnomes, mushrooms, hedgehogs, etc.,) ribbons, etchings, prints, postcards, Victorian paper scraps, and assorted ephemera for months now. My plan was to make these collaged paper tags out of a scanned and photocopied image of this wonderful antique etching of children walking in the woods, overlaying them with these gorgeous colorful Victorian litho scrap leaves, punch a hole in the top of each, string as many of these lovely silk ribbons through the hole as would fit, then attach at least two or three really terrific antique treasures to each card. I was going to put my contact info and an identifying piece of artwork on the back of each one, and then paint very tiny highlights on these cards in German glass glitter. Oh well : (

This is such a loss for me, but there is no way that I can leave my Mom. I've been looking forward to it for years and finally made the commitment and paid for my ticket in September, but good ol' Rosa, my Mom's caregiver, dropped this sudden vacation of her own on us with less than two weeks notice -- and she just took a vacation and isn't due for another until August.

Poor Susan, the new caregiver, is really getting thrown in at the deep end. She'd only been there two days before we were packing Mom up and taking her to the hospital. She doesn't know Mom's habits -- how to get to the market or the bank, how to do any of Mom's errands. She'd never even driven Mom's car. I mean Rosa was so busy running around getting her hair done, getting pedicures and manicures, etc., that she didn't bother to show Susan anything, and without telling any of us, left it all up to me. This of course is part of her strategy, I'm familiar with it by now -- make the new person, or the weekend person, look as bad as possible, so that they will in no way threaten her position.

I am hating Rosa so much right now, not just for being a selfish, thoughtless, thieving liar, but for giving Mom this life threatening virus, coughing all over her when she knows how weak my Mother's immune system is, and then for trying to hide it from me. Oh and leaving her alone constantly. I really didn't know how often she was leaving my Mom. It's so wrong.

I just hate her, and then guilt ridden recovering from being lapsed Catholic that I am, I hate myself for hating anyone, and for failing to do what I always do, which is to try to find the good in her, and trying to understand things from her perspective. Although it's pretty hard to understand her up and leaving my poor Mom like this, stealing God knows what on her way out, stealing so much that she accidentally left a wadded up dress of mine behind.

I don't know what I'm going to do with her when she comes back. Beau is so upset that he told me if he sees her he's going to punch her in the face. I think it might be wise to keep them apart for a while. Ya think? She's going to be pretty upset when she finds out that her former cushy life of thieving ever little fine thing of my Mom's or mine that she can get her hands on (or thinks won't be missed) to resell, and using my Mother's car to drive all over town, while leaving my helpless blind Mother all alone is over. She's always threatening to sue us for one thing or another, so I guess this will be my fate at some point. What a mess. And yet, this is my Mother's life, and she still wants her, well, she can have her, but not if she ever endangers or neglects my Mother again.

Well, that's enough of my woes for one night. I'm sure ours are small by comparison to whatever some of you may be going through and I'm so sorry I can't be there for you. I've just been too overwhelmed and I just wanted to check in.

Is there anyone out there with a desire to hang out with some wonderful artists in the Fort Worden Washington area for the first Wednesday through Sunday in April? I'm hoping to exchange my seven hundred plus dollar ticket for a wee bit of hand made artsy goodness.

Love You,

mom hospital easter sunday 08

This is the Easter basket I gave my Mom. No candy. Poor Mom. She loves to eat more than anything but her blood sugar is too high. She asked me to take this picture of her with her arm up like that because she wanted you to see her IV for some reason. She's wearing her headphones because she was just listening to a romance novel on tape. I can't get her to figure out how to work the CD player I bought for her but she can push the play button on a Walkman so for now I'm buying and renting all of the romance books on tape that I can put my hands on. She goes through about one every two days and this keeps her happy and occupied.

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