Thursday, December 22, 2011

2011-12-22: More pink, pink, pink!

Here's my whole collection (so far) of pink Christmas trees and pink poodles.
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My poodles are on Craft Gossip today!

To view the post go to:

They are talking about me at

Thursday, December 15, 2011

2011-12-15: It's a pink poodle Christmas!

This year I added another pink tree to my collection. I decorated it with poodle ornaments that I made.

I took old sparkling pink ball ornaments, added some pink pompoms, a black nose pompom, red felt tongue, a pair of googly eyes and pink felt ears.

Aren't these ornaments just the cutest ever?
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Wednesday, December 7, 2011

December 7, 2011: Upcycled Scarf

This morning I put on a Christmas-y tshirt. It was too tight (must have shrunk, huh?). I wore this shirt on my first date with my husband, Jim on 12/21/98. Since it held good memories for me I wanted to keep wearing it.

I laid the shirt out flat and cut it from arm hole to arm hole. Voila! I had a new infinity scarf. The hem finished one edge and I turned under and stitched the other edge.

I made the scarf this morning. The whole process probably took about 10 minutes.

I've included a photo I took just now of me sitting at my desk and wearing the scarf.

Friday, December 2, 2011

December 2, 2011

Getting over the one year hump is definitely making it easier for me to cope.
I don't go into shock each top I see Jim in his wheelchair. I don't feel around for him in my bed. I don't cry each time I drive past a place where we've been together...

So, it's easier. Not good but easier. I still mourn for our old lives but I am growing accustomed to our new ones.

Wednesday, November 23, 2011

November 23, 2011: Anniversary

Today is the anniversary of my last normal day. I don't remember what I did that day - probably just looking forward to a long weekend.

Jim most likely was at his desk looking at stock market numbers.

The next day, November 24 is the day that our lives changed forever. Jim fell at around 5:45 that evening and immediately became quadriplegic.

I am still mourning our lost way of life. I hope that getting over the huge hump of the one year anniversary will bring me some relief.

Monday, November 21, 2011

November 21, 2011

I got to play in my studio a bit over the weekend. I finished sewing a stocking for my grandson Kenny. I had a good time making it. I'll post a photo soon.

I also finished my drawstring bag. I decided I'd keep my knitting in it.

My studio is a big mess again. I can't seem to make anything without creating havoc. I am trying to be sure to clean up the room after each project.

Monday, November 14, 2011

November 14, 2011

Jim used his walker to go from the family room to the bathroom last night. That's the farthest that he's walked in the house.

Meanwhile Mom's senile dementia is getting worse. I have to continually remind her to take her meds and keep her feet elevated. Every time I look away she puts her feet down on the floor. Her ankles keep swelling causing stasis ulcers.

Yesterday Lupita told her why she had to keep her feet up. She told Lupita okay and how smart she was. The next minute her feet were back on the floor.

At least there is improvement in Jim's future. Mom will just keep getting worse. It is difficult to watch and very emotionally draining.

Sunday, November 6, 2011

November 6, 2011: 11:45 PM

Mom is up again. Walking and moaning her way into the bathroom. What do I have to do to keep her safely in bed?

I'm too tired to go to sleep now. Plus, she might just fall again. Or, Jim might call me for something.

I either have to take a sleeping pill and sleep through whatever. Or, stay awake tonight and be half dead tomorrow.

November 6, 2011

The paramedics just left. Mom fell out of bed again. I had to tell her not to cry and scream or they'd take her to the hospital. At least she listened to me.

A couple of years ago she pressed her lifeline button and the paramedics came when we weren't home. They took her to the ER. She probably scared them with all her crying. Andy, back before Jim got hurt and he still spoke to us, showed up at the house but the paramedics wouldn't listen to him. Mom spent the whole time in the ER complaining that she wanted to go home.

Tonight I put a diaper on her and told her to just stay in bed. Usually she gets up at least a half dozen times to go to the bathroom. I think she forgets that she just went and gets up again.

I don't what to do. I know she gets better care here than at a nursing home. I'm afraid that if I put guardrails on her bed she'll forget about why she has them and start screaming.

The stasis ulcers on her legs are getting worse. She just won't keep her feet elevated.

Jim is more cooperative. He gets cranky but he tries to take care of himself a bit.

At least if you are reading this blog you can stop reading at any time. When people ask me how I'm doing, I tell them. It upsets them. I wish people would only ask if they wanted to hear the answer.

I really dislike when strangers ask "how ya doing?" instead of a simple "hello."

I guess that makes me strange. I have to work at remembering that they think they are being "civil." I don't know why I can't get that through my head.

November 5, 2011

Tonight Jim used a walker to walk from the kitchen table to his bed in the dining room. This is a BIG deal. He was walking with his back straight and lifting his feet. The next big destination - the bathroom!

Yesterday I was at the Quilt Festival from 10 AM to 5 PM. I was still tired this morning. Since I didn't take my scooter I had to choose between shopping and admiring the quilts. Shopping always wins. I wish I had had enough energy to go visit the ASG booth, see the art dolls and wearable art.

I'd have to pay a sitter again to go another day. So, I packed in as much as I could in one day. I wasn't even sure that I wanted to go this year. I never got to play with my purchases from last year. Jim's accident occurred just a couple of weeks after the show.

I decided to go and not buy any fabric or clothes. I did really well. I only bought 3 fat quarters - of cute cats and a poodle. I want to make Kenny some diaper covers with them.

I went through lots of planning in choosing which handbag and shopping bag to take with me. I ended up throwing my purse into the shopping bag. I bought a half apron to hold my credit cards, cash and phone. Later I found a cute little compact bag to carry - it was only $8.00. It worked better than the apron since it was easier to look into. The tote bag worked our very well. It got heavy quickly since I put my coat and large fringy scarf into it early on. The convention center was too warm.

I bought a pattern to make a light weight wallet and one for a drapey vest. That was it for pattern purchases.

Several booths had Laurel Burch stuff. I couldn't resist buying 2 silk scarves for $5 each and a large tote bag for $20. I purchased one strand of beads and 4 strands of french ribbon to make necklaces from.

I finally found the little table top needle threader that I had heard about. I got a hemostat to replace the one I broke recently. I found a pair of scissors that Jim could use and a couple of clamps for his occupational therapy.

I wanted to buy these flower makers that I read about. I couldn't remember the name but I knew the manufacturer was Clover. Nobody knew what I was talking about. I did find some locker hooking needles. I read an article on locker hooking that looked pretty interesting so I want to try it out. It looks like a good craft to do while watching TV with Mom.

All in all I am proud of myself for resisting all the beautiful fabrics, yarns and embellishments. My sewing time is more limited now and I don't need more projects waiting to be made.

Sunday, October 30, 2011

October 30, 2011

My episode on "That's Clever" aired again. I even got a couple of comments. One person wants the pattern. I can't find the instructions that I wrote up for HGTV. Maybe I have it on the office computer.

I wish I had time to do some sewing this weekend. I've been spending my free time changing out my closets from hot to cooler weather clothes. Sweaters and jackets take up a lot more room than summer tops.

The kitties are having a wonderful time jumping in and out of the closet and sleeping on top of clothes as I try to sort them.

We won't get to play"dress up" for Halloween this year. Lupita didn't want to spend all day with us again. I can't blame her. She's over every day doing something with Jim and/or Mom.

I'm glad that we went to Kemah last year. Maybe next year...

A couple of years ago we went to one of Andy's friend's halloween party. I still can't believe that he has cut me out of his life. I can't say anymore about him in this blog.

I'm tearing up again. later...

Here we are in 2009:
I can't find last year's photo.

Sunday, October 16, 2011

October 16, 2011: typical day of a caregiver

Today is the anniversary of the car wreck that left me handicapped at the age of 18. My left kneecap was shattered so the surgeon removed it. I've found out since then that people really NEED kneecaps.

Now I've learned what handicapped really means. Jim is REALLY handicapped. He's stuck in a wheelchair.

Today I got up at 5:30 AM and let in the caregiver. I went back to bed until 7. Got up, checked on Jim, threw on a hat & clothes, went to CVS and then Walmart grocery store. As I was loading the car with my purchases I had another flashback of Jim helping me with grocery shopping. We would take 2 carts, he would go one way and I'd go the other. He'd load the bags into the car, carry them into the house and I'd put the stuff away. I'm happy that I had his help back then but I mourn the loss of his help now. I teared up in the Walmart parking lot.

I drove home and I carried in $200 worth of groceries. The caregiver left at 9 and I came home at 9:15. I checked on Jim. He needed my immediate help. I cleaned him up then finished putting groceries away. Mom came in and I made her breakfast.

Finally at 10 I got to sit down and have a cup of coffee.

Monday, October 10, 2011

October 10, 2011: my "Katwise" coat

I have long admired the coats that Katwise makes from cut up wool sweaters.  See one of Katwise' coats at the bottom of this post.
They are pretty pricey and they deserve to be.  In Houston I'd be lucky to be able to wear a wool coat once during the winter. (I keep trying to add a link to her etsy shop but it doesn't seem to be working.  To see more of her coats, just go to etsy and search for "katwise."  She has lots of really nifty coats on her page.)

Then Katwise published a guide to make your own coat.  I made mine from cut up t-shirts and leftover knit fabric.

I planned on making the big full skirt and long crazy hood.  The full skirt looked terrible on my fluffy body.  I removed some of the skirt panels and cut the front 2 panels parallel to the front closure.

Then I added the sewn on waistband and belt.  Again, it looked bad on me.  So I removed the waistband and I was able to really make sure that the top hit me right at the waist.  I added belt loops and a belt that helped me better fit the coat.

I made the long hood and attached it to the coat.  It wasn't heavy but it still felt like it was dragging the coat back and choking me.  So I removed the hood and added a collar.  The collar was really cute but the neckline was still too high.

So, then I removed the collar and added a facing to the bodice of the jacket.  I added some large snaps to close the coat properly. Because of my cutting down the front panels the coat wasn't large enough to wrap around me very far.

Then I started on the fringed scarf.  I'm still adding scraps to it.  I don't think it's possible to add too much fringe to the scarf.

The bodice of the coat is a Coldwater Creek t-shirt that I bought for $6.00.  The striped pieces are cut from a nightgown that I purchased at Alcatraz.  The pink is from a Talbot's t-shirt that I had purchased on ebay.  The rest of the pieces are leftover scraps of fabric that I had laying around my studio.
My inspiration from Katwise:

October 10, 2011: ASG meeting

Last Saturday our neighborhood ASG group met in a new-old location.  8 years ago (approximately) we used to meet at the Eleanor Freed Library on Montrose.  Then the funding cuts made the library close on Saturdays so we moved around a bit.

I volunteered to do the program because our location is in the middle of my prime shopping grounds.  There are some really good thrift stores in the area  I love shopping in thrift stores.  It's kind of like hunting for treasure.  Plus, I can actually buy several items without spending too much money.

My program was showing off some of my thrift store finds that I upcycled.  These pictures are of jackets and robe that were way too small for me.  The fabrics were lovely.  I removed the sleeves and used the fabric to add inserts to the side seams.  Voila, clothes that fit me!

The red vest was made from a Japanese robe that was actually made in Japan.  I sewed this vest long before I knew that I would have a Japanese daughter-in-law.  I loved the colors and design of the robe's fabric.
I added fabric from the sleeves of a jacket and inserted it into the side seams to make this black vest.

This blue vest combines a jacket and applique pieces from another vest.

Sunday, September 25, 2011

September 25, 2011:

My friend Mary and her husband Rod are moving away next Tuesday. I met Mary at a Red Hat event at her house. She was quilting and I told her that she might enjoy the American Sewing Guild. She joined our neighborhood group, became the leader of the group for 3 years and also volunteered to be the treasurer of the Houston ASG chapter.

Before I met Mary I thought that all native Texans were ignorant republicans. She is the nicest native Houstonian that I've ever met. I will miss you Mary. And you too, Rod.

My $10,000 Pillow

Last month I took a free class/demo on a Bernina Embroidery machine at Sew Contempo in Clear Lake. I went to get me out of the house and do something that I could enjoy all by myself.

I learned that the Bernina machine was too complicated. The instructor told us exactly which buttons to push. The pathways made no sense to me but I did end up with a pretty pillow. I'd like a matching pillow. But the embroidery machine costs over $10,000 plus you need to buy other equipment along with it.

Maybe I'll buy one if I win the lotto.

Sunday, September 18, 2011

September 18, 2011: I deleted some posts.

Sometimes reporting my feelings hurts other people in my life. I think of this blog as a journal but it's not. It's public.

So, I've deleted some posts and will probably go on to delete more.

Saturday, September 17, 2011

September 17, 2011: another Saturday

I've got a sore back today. It's probably from moving stuff at the office on Thursday. I don't feel like doing anything because it hurts. Hopefully my 2 invalids will behave today so I won't have to work too much.

I got to work in my studio for a couple hours yesterday. Currently, I'm in to using paint sticks on t-shirts. It is quick to do so I can actually complete a shirt before being summoned by Jim or Mom.

I've got so many ideas of things I want to make. That's good and bad. It's good because I can work at home. It's bad because I get frustrated when I can't spend much time in my studio.

I have to keep my studio doors closed so cats don't get in it. There's too many things that can hurt them in there - pins, threads, beads, etc. Plus, they like to jump all over and knock stuff down. It's messy enough in there already.

I'm thinking of letting go of one of my hobbies. - dollhouses. I've got all these cute things waiting to be put in a little house. I have a big bookcase type house in the kitchen and a big bamboo cage in my room. I hate to do it in case I get a granddaughter. But, then I'd have an excuse to go out and buy more stuff.

So many hobbies, so little time.....

Tuesday, September 6, 2011

September 6, 2011: locked out

I was just leaving the office but first I went down the hall to get some water. I heard my door close behind me. I immediately remembered that I had put my office key into my purse. My purse was in my now locked office. I am sitting in the conference room waiting for a Rice policeman to let me in.

I've been doing lots of stupid little stuff lately. I'm always misplacing my glasses and my camera.

Cop is here!

Saturday, August 20, 2011

August 20, 2011 PM

It's amazing how just a little sewing time makes my day so much better. After I made breakfast this morning, showered and pulled on the horrible hose, I sewed for a couple of hours. I finished my stuffed owl for the new baby.

Tomorrow I'm going to a sewing class in Clear Lake. I know it will be all about trying to sell me a new expensive machine but it's something I can enjoy doing by myself.

Eventually I'll be able to get Jim in and out of the car and we can go do things together again.

August 20,2011

Jim, Lupita and I were going to attend the Abilities Expo today. We all decided that we were sick of handicapped stuff so we're not going.

I rarely think about going anywhere or doing anything. I'd be thrilled to just spend time in my studio.

Yesterday I got up, put on my horrible support hose on and went to the grocery store at 8 AM so I could beat the blazing sun. It didn't have everything I needed. When I came home from the grocery store Mom was sitting at the table wanting to be fed. She was doing her "I want a drink" routine. I brought her orange juice and I told her that I couldn't face cooking eggs because I was so overheated from going to the grocery store, bringing in all the bags and putting stuff away. I told her that I'd make her a good lunch later.

Then I went to Walgreen's to buy what the grocery store didn't have and to get a prescription filled. I got home and had to get Jim dressed and ready for company. His friend, Kevin McGregor came to visit him.

I started to make lunch but I kept feeling whoozy. I told Mom I had to sit for a while. She said that I should rest a bit. But then she immediately started her "I'm hungry, I'm hungry" routine. She wanted me to bring her an orange. I reminded her that I had to sit down for a few minutes. Her demands drive me crazy. I guess you really do become a child again when you get old. She has gotten very demanding and self-centered.

I made turkey burgers and squash medley for lunch. I cleaned up the kitchen and then went to hide in my studio. I just didn't want to hear Mom's constant moaning and groaning for a little while. Jim found me and I had to help him with the urinal.

I went into my bedroom, laid down and passed out for a couple of hours. I knew that Lupita would be coming soon to take Jim to the gym. I just got all worn out. I think I'm too old for all this caretaking. I guess I'm lucky that we can still afford to hire people to help.

Then I got up and started making dinner and cleaning the kitchen some more.

Maybe I have to hire a sitter and leave the house in order to get some time for myself. I just am not interested in going out alone. Jim and I used to do so many things together and I got spoiled. Plus, it's over 100 degrees outside and my support hose make me super hot.

It's 8 AM and Mom is stirring in her room. Time to be starting the day again.

I told my boss, Carole that coming to the office was like a mini-vacation. Even copying books is preferable to cooking and cleaning.

Now I'm the one moaning and groaning! That's why I haven't been blogging much anymore. I don't want to write how I feel sorry for myself. But, it's my life so I document it.

Sunday, August 14, 2011

August 14, 2011: Sunday

We had a relaxing Sunday today. I can't believe it's almost over. I still have so much more that I want to accomplish.

Jim and I watched "Sunday Morning." I made another little scrappy doll while we watched TV. I think I make dolls when I'm depressed. The last time I was in a big doll making mood was the last couple years of my first marriage. I made a bunch of dolls during that period. Now I'm making little dolls out of scraps and bits and pieces of lace, ribbon, yarn, etc.

I guess it's a kind of therapy for me. I also knit a lot. In the early days of Jim's hospitalization Mary Haper came to visit. She noticed that I wasn't knitting. I was too distraught to do much of anything, other than be with Jim. I started knitting again after a couple of weeks. My grief therapist says knitting is one of the most calming activities one can do. Guess it's a good thing that I enjoy it.

I spent a lot of time organizing my chest of drawers today. I just threw things into it for all the months when I spent my free time at the hospital or nursing home. How come when you clean it's gets very messy before it actually gets clean? I probably left stuff all over the bed that I will have to put up before I can get into it.

I still suffer from a terrible sadness. I am grieving for my former life with Jim. Jim says that I'm taking his injury harder than he is.

Today I wanted to pull down a box from the closet. My first thought was to get Jim to help me. Then it hit me again - I'm the only one who can do anything. I'm the only one in the family who can take out the trash, get the mail, fetch the newspaper, make meals, buy groceries, etc, etc. It's a very lonely realization. It also is very tiring.

I need to go to bed.

Thursday, August 11, 2011

August 11, 2011: doctor's appointment

Lupita, Jim and I took a trip to TIRR hospital yesterday. Jim had his first follow up appointment with Dr Berliner. The doctor was impressed with Jim's progress. He wrote an order for more PT, a referral to get botox on his hands and shoulder, and prescriptions.

TIRR is such a sad place. There was a young father riding in a wheelchair while his wife pushed 2 little kids in a stroller. It's difficult enough to care for a quadriplegic alone. It has to be so much harder to take care of children, too.

I could not care for Jim alone, especially in the beginning. Last night his caregiver didn't show up. I was already tired from the busy day. Then I had to help Jim into bed. Putting Jim to bed is a big procedure. He wears special boots, hand splints, diaper and his C pap machine. I wasn't very good at doing all these chores and Jim got really mad at me. Thank goodness I'm on lots of antidepressants. In the past I would have shut down and not be able to speak for days. It's like being stuck in a giant bell jar - to use Sylvia Plath's analogy. I'm glad that I don't have to feel like that anymore.

All week at work I've had to move boxes & furniture, stand and make a zillion copies, go back and forth, upstairs, downstairs. Right now I'm taking a break.

Tuesday, August 9, 2011

August 9, 2011

I don't go with Jim to his physical and occupational therapy appointments. Lupita takes him since she is able to get him in and out of the car. So, it's difficult for me to do progress reports.

Yesterday he told me that he did a little walking with a specialized walker. His left leg is improving. I wish I had some photos that I could share.

He still needs lots of help turning in bed. The bed is an air bed and it kind of squeezes him so that he can't move very easily.. He needs help to change his position.

He still is doing a daily bowel program.

Hopefully, I'll be able to do a progress report after his doctor's appointment tomorrow.

Monday, August 1, 2011

August 1, 2011: Mom turns 90 in 2 days!

I told Mom that her age made me feel old. So I've decided that I was a miracle child born to a 62 year old woman!

I'm trying to figure out how we can celebrate her birthday. I have to work all day on that Wednesday. By the time I get home Jim will be at the gym with Lupita. They won't get back until around 8 PM. Lupita says that we should tell Mom that her birthday is Thursday and we can celebrate that evening.

Then Friday is our anniversary. The same problem. Jim will be in the gym until 8 PM.

Now that I think about it I realize that these are good problems to have. It sure beats having Jim in ICU or fighting with the insurance company.

Saturday, July 30, 2011

July 31, 2011: phlebitis

Blogging is a great way to keep a record of events. I've looked up when Jim went to TIRR, when he saw his doctor last, etc. by looking through my blog. So today I am recording my current bout of phlebitis.

This is my third weekend sitting around with my legs up. I've got a bad case of phlebitis in my right leg. It always affects my right leg- I guess from all the years of favoring my left.

I went to a vein specialist on Wednesday - Dr Kapusta. He did an ultrasound on my leg. He gave me antibiotics and said to take 2 advil 3 times/day. He insisted that I see my primary care physician.

So, yesterday I went to Dr Holmsten. He told me take celebrex and keep doing what I was doing - support hose, elevate leg, use a moist heating pad. I was supposed to call him on Monday.

Today when I got up, it was worse. So I went to the doctor's office again. On Saturdays it turns into a Next Care clinic. I saw Dr Lopez today. He changed my antibiotic. I had him write diflucan and lomotil also. I HATE taking antibiotics - they make me sick.

So, here I am propped up on the couch with my heating pad.

My invalids are being good today. I told them I couldn't keep waiting on them today. I bought subways for lunch and dinner. Now Jimmy and Lupita are here and helping out. Hurray!

Sunday, July 24, 2011

July 24, 2011: new milestone

This morning Jim got out of bed and into his wheelchair with very little assistance from me. This was the first time we didn't have someone else assist him. He felt confident enough to do it with just me.

Little Stella was spayed and declawed on Wednesday. I picked her up on Thursday. She was so happy to be home. She didn't act like she was in any pain. She didn't hold a paw up in the air like the other kitties did. I kept her in my room for 2 nights. She seemed so well that I let her out with the boys. She has to use special litter until her paws heal. She's been very good about going in her own box. She has a very loud purrbox and is so sweet.

My phlebitis is still bothering me. I think it's a bit better tonight. Lupita massaged my leg the other night and that really helped to move the blood upwards. I'm going to look for a vein specialist. It has been very difficult to care for my 2 invalids and try to keep my leg elevated. I want to look into the new treatments available now. I had the veins stripped in 1988. My ankles immediately turned black & blue and have stayed that way ever since. I've had phlebitis several times since then so the treatment didn't last.

Kevin called last night and then we got onto Skype. I was able to see Kevin & Tomoko. Tomoko has a nice big belly. She has less than a month to go until the baby is due. She was so sweet to let me see her belly. She looks the same all over and then there's the belly. She looks so cute.

They received my package full of baby things that I made. I knitted a blankie, sweater, hat and booties. Then I appliqued ties onto onesies. I only wish I had more time to sew. My free time is extremely limited. I have more free time at work than I do at home.

Jim is in bed now. He's already called for me once. It's hard to have to wake up several times during the night to help him. But, I got to take a nice nap this afternoon. On the nights when I work Jim hired a helper to spend the night. That way I can get a good night's sleep and go to work rested.

Sunday, July 17, 2011

July 17, 2011

Tomorrow will be the first morning that I don't have to wake up at 5:30 AM since Jim has come home. His caregiver can't come tomorrow so I don't have to get up and open the front door.

I haven't felt like blogging. I guess I am burned out. But, it's kind of like keeping a journal - I need to write something every day.

I've got the beginnings of phlebitis in my right leg. I need to keep it elevated. I'll try.

On a lighter note, here's a photo of my little Stella. She is so cute and soo naughty. She gets into everything!

Thursday, July 14, 2011

July 14, 2011: getting in the groove

Things seem a little easier now. I guess it helps that I have adjusted to our new routine at home.

I wake up at 5:30 AM everyday so I can let Jim's first caregiver in at 6 AM. I've starting waking up without the alarm.

I've become accustomed to Jim sleeping in a hospital bed in the dining room. It still jolts me every time I see him in his wheelchair or when a caregiver has to lift him in and out of bed. That will probably go away with time, also.

Jim continues to work very hard on his recovery. He thinks he will be walking by Halloween. Walking will help straighten out his digestive system, decrease muscle spasms, etc.

Last year at this time I was the one in a wheelchair while I recuperated from knee replacement surgery. Now I look back at that time as the "good old days." Then I still had a mobile husband and my son still was in contact with me.

I've lost an awful lot these last months. Jim and I used to go out to eat, shop at estate sales, go to movies frequently. We had a lot of fun together. My son used to welcome me dropping by his apartment after work or meeting for lunch. These activities are all gone for now.

I have been able to do a little bit of sewing. I appliqued onesies for my grandson-to-be. I lunch with a group of women on Wednesdays after work. I'm working on reclaiming parts of my life. I meant to attend a HAFA meeting last night but I forgot all about it. I'll try again next month.

Sunday, July 10, 2011

July 10, 2011

I forgot to pop my antidepressants as soon as I woke up this morning. I went to Kroger's at 8:30 AM and I kept thinking of how Jim used to go with me and was such a big help. So now I'm crying again.

It's amazing how we go through groceries. I went twice this week and spent over $100 each time. We have salad at least once a day so I've got to pick up fresh veggies.
Mom and Jim each eat 2 eggs per day. A dozen eggs doesn't last very long around here. Then there's the fresh fruit, bread, etc.

Jim and I used to go out to eat several times a week. Now every meal is at home. That means shopping, putting groceries away, preparing meals and then cleaning. It's a lot of work. Jim's morning caregiver, Chris makes breakfast for Jim and sometimes for Mom.

Mom likes to sit in her room with her walker in the doorway. That's her signal that she wants someone to come in and put her slippers, etc. on her. This morning I told Mom to go to the kitchen before Chris leaves so he would make her breakfast.

Yesterday she went back into her room after breakfast waiting to be dressed. If I ask her, if she can dress herself she always says "of course." But yesterday she stayed in her robe all day.

I left the 2 of them alone yesterday for 2 hours so I could go to a sewing meeting. They did just fine.

When Jim was in the hospital and nursing home I spent lots of time with him. Now he sits at his computer all day and evening. He interacts with his caregivers more than me. So, now I feel lonely too.

Monday, July 4, 2011

July 3, 2011: Jim's Birthday!

We ended up having a pretty big day for Jim's birthday. My cousin Rick and his girlfriend Roseanne came in from Laredo. They cooked a wonderful luncheon for us - fennel salad, shrimp cocktail, a huge piece of salmon, lemon pasta and asparagus. The salmon was baked on a bed of citrus slices and served rare. I'd never heard of rare salmon. But, that is definitely the way it should be eaten! It was wonderful. Rick and Roseanne love to cook and eat out at fine restaurants. Houston has lots of great restaurants for them to try.
Jimmy and Lupita came for lunch, too. I made Jim a big dish of sugar free jello and the rest of us had angel food cake with jello.
After that we played dominoes with Jimmy and Lupita.

July, 2011: The world's cutest little kitten!

Isn't little Stella the cutest kitten that you've ever seen?

Thursday, June 30, 2011

June 28, 2011: My half birthday

Jim and I had our first date since November 2010. We went to El Ranchero, our local Mexican restaurant. Lupita came with us so she could get Jim in and out of the car.
It was a bittersweet experience.

June 30, 2011: last day of out of pocket paid up

Tomorrow, July 1st, is the beginning of the new fiscal year at Rice. I spent so much money on physical therapy this past year that I paid in all the out of pocket expenses pretty early on. I have one last doctor's appointment this year at 5 PM today.

I have a choking cough that exhausts me. It's been going on for a couple of weeks now so today I'm going to go to my doctor. It's probably just a spike in my allergies. There's all kinds of new equipment in the house - power chair, power bed, new a/c and duct work. Any of these could set my allergies off. Not to mention the stress that I am under. Now I have a more consistent stress so the adrenalin doesn't kick in to protect me like it did in the early days of Jim's illness.

Jim continues to slowly progress. Lupita works him very hard when they go to the gym. And he has finally started pt and ot this week.

Little Stella is the only joy in my new life as the caregiver. She is learning not to bite me. The other cats don't discipline her so she keeps biting them. She will run and jump on their backs and bite them. She needs to learn more kitty manners. She joins me in bed at night. Mostly she sleeps in the carrier that I put on Jim's side of the bed. At least I don't have to sleep alone anymore.

I do have another joy - I still have Jim and Mom. Pre-accident I was aware of how lucky I was to have them both in my life. I still have them and that's good, even though their care is more complicated now.

Thursday, June 23, 2011

June 23, 2011

I'm still trying to get Jim's prescriptions straightened out. Dr Berliner promised he would check over the scripts that Dr Li wrote. But, several of them are still incorrect. He doesn't respond to my emails or faxes. Guess I'll have to go search for him in the halls of TIRR. He acted like he would be easy to reach but he is NOT.

Jim is getting stronger, thanks to Lupita being a great trainer. Next week he starts PT and will learn how to use his strength to do more activities.

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Thursday, June 16, 2011

June 16, 2011: better news today

Little Stella doesn't have a fever today! The vet says she should still stay isolated until tomorrow. I think I'm going to let her out when I get home.

I'm meeting a friend, Phyllis for dinner this evening. We're going to La Guadalajara. I haven't eaten Tex-Mex in ages!

I need to start having a bit of a social life again. I went to an ASG meeting on Saturday. I signed up for a beading class on Monday mornings. I can't just stay home and wait on invalids. I wish I could do some things with Jim. He needs to grow strong enough to do his own transfers. Then we could go places again.

Yesterday I was so busy all day. I took the kitten to the vet, cleaned up my studio so I could keep Stella in there, cooked a big lunch for the 3 of us. I answered the phone a gazillion times - it was either the lawyer, repairmen or an insurance company. Answering the phone wouldn't have been work if I had carried the phone with me. I had to jump over pets, avoid wheelchairs and walkers to get to a phone. Plus answer the doorbell, do the laundry, clean the kitchen, etc.

I think I need another part time job so I won't feel so tired. I used to love spending my days off at home sewing. I guess once we get into a routine I might be able to have some time to sew again.

Life is just so damned difficult. I no longer feel suicidal but I do still question why a person should keep on living and risk more tragedies. I guess that is the point - just keep living.

Life would be easier if I could get into religion. I envy the people who are able to believe that everything happens for a reason, that a higher power is taking a personal interests in their lives. But, a shared delusion is still a delusion. That must be why the "holy people" get so angry if you don't go along with their beliefs. I think if they were secure in their religious beliefs, they would not attack the agnostics and atheists of the world. Why are some people so up in arms about no prayer in school, what religion a leader practices, keeping "God" on our currency? In my opinion they should be celebrating that they have a belief system and let other people have theirs.

But, I digress (ha, ha). Next week we're getting a new A/C system. It will be nice to have a comfortable home again.

Wednesday, June 15, 2011

June 15, 2011

Today is Wednesday and I'm home. I took Stella to the vet this morning. The doc thinks she may have a fatal virus. I've already spent almost $300 on the vet. If she still has a fever, she'll have to be euthanized.

I'm trying not to think about it.

We had a A/C repairman out this morning. Looks like we need a whole new system - up to $13,000.

The good news just keeps on coming.....

In order not to think I am cutting this post very short.

Wednesday, June 8, 2011

June 8, 2011: It's better.

I'm home today, Wednesday since I will be working for Carole on Friday. I get next Wednesday off, too. Actually, it's a whole lot nicer to be at work than at home these days. Maybe I need a full-time job - away from home - like some working moms have.

We're getting into a routine with Jim at home. A nurse's aid, Chris comes every morning at 6 AM and leaves at 9 AM. He gets Jim out of bed, does his bowel program, gives him a shower and sometimes makes his breakfast. He's expensive because he comes to us through an agency. He's a nice guy and has lots of experience. He has a difficult time separating real life and religion. But, he does a good job.

Lupita comes over on Monday, Wednesday and Friday afternoons to take Jim to TIRR's gym to exercise. Jim could join the gym but still isn't a patient there. He can't get on the schedule for OT and PT. The outpatient office has to do their paperwork before he can be registered and then he gets to schedule appointments. It's so stupid - he needs to be doing OT & PT NOW! At least he gets exercise with Lupita.

Lupita brought Claudia over yesterday afternoon to train her. Claudia will be working on Tuesdays & some Thursday afternoons. Claudia doesn't speak much English but she's seems intelligent and willing to work.

Last night Jim had an "accident" in bed. I had to change his linens with him still in bed. Then this morning he did it again. I'll have to take more precautions from now on. It really saddened me because I thought he was past this. Maybe he has a UTI.

Saturday, June 4, 2011

June 4, 2011: I am totally exhausted.

I just don't know if I can handle this but what choice do I have? Jim needs so much done for him. It's overwhelming.

I got up at 5:30 AM today so I could let in the aide at 6. He got Jim up on the bedside commode to do his bowel program, gave him a shower, dressed him and got him into his chair. I had to assist a lot. Tomorrow we're having a different aide. It's a pain teaching them what to do.

Then I made breakfast for the 3 of us. Lupita came at 9:30 to take Jim to TIRR's gym at Kirby Glen. For $30/month Jim can use the gym equipment on Saturday mornings and late afternoons Monday, Wednesday and Friday. Lupita will work with him at the gym. That's good because I don't when Jim will get on the schedule for OT & PT.

Jim was concerned this morning because he didn't void very much. So I cathed him. It's a good thing I did because his bladder was extremely full.

Then Lupita took Jim. I started cleaning the kitchen, laundry room, organizing Jim's stuff. I decided to lay down and rest a little. But, Mom starting calling me. She wanted to be dressed and eat again. I told her she just had breakfast and to dress herself. She got mad at me. She sat in her recliner and went into a very deep sleep.

Jim & Lupita returned and I kept on cleaning house. Then I fixed pork chops while Lupita went shopping for salad fixings.

After dinner I sat down for a little while. Jim wanted to stay up and watch TV. But, I realized that his rental bed is so rickety that I wouldn't be able to get him into bed by myself. So, he was on the bed by 8:30. But then there was insulin and pills to give him. He wasn't comfortable so we had to work on his pillows. This would have been impossible for me to do alone. Lupita and Jimmy worked hard to get Jim settled for the night. Jim took a sleeping pill so I hope that I can have a little time alone now.

I should go to bed but I want to take advantage of the quiet time by myself.

Friday, June 3, 2011

Thursday, June 2, 2011

June 2, 2011 PM

It's 9:30 PM and I've been working since 8 AM. I am beyond exhausted.

A man from Active American Medical Supplies, Adam, came at 8 to install a ramp for the garage entryway. Insurance doesn't pay for ramps. I guess they think I can carry a 350 pound powerchair into the house. I ordered a foldable ramp for the front entrance and had a grab bar installed in the bathroom.

I called and called and called to get Jim a bed. Finally I was told they would deliver a rental bed tomorrow morning. And Aetna approved the purchase of a hospital bed but it won't be delivered for a couple of weeks.

Then I called and left messages at the TIRR outpatient clinic at Kirby Glen. I wanted to get Jim scheduled and on the waiting list for pool therapy. No one called me back so I drove over there. I found the scheduling office and said "Hi, I'm Joanne Carpenter and I've been leaving you messages." One of the women, Tina, said that they had a new answering system so they hadn't gotten my messages. I was doubtful of this but, I was polite. Tina looked into her system and said Jim hadn't been entered yet. So I went to the Insurance Approval office and spoke to Kaneesha (?). She hadn't started processing Jim yet. She promised she'd work on it today.

I went to TIRR to be with Jim. He had pool therapy at 3. The therapist, Christa said that their walker was broken. She said she'd put an order in for a new one. I went into the gym and brought in one of their numerous walkers. She wouldn't use it - said she'd get in trouble. So, I tracked down the gym manager, Chris and he got us a walker to use.

Jim was able to walk across the pool using the walker. It made him so happy. I took a video and will post it later.

After the pool we went back to Jim's room. He got a shower and went to bed. I did some packing while I waited to see the doctor. Finally at 7 the nurse, Debbie paged him. He didn't call back so I took the prescriptions that were written yesterday. I thought he was going to talk to me some more about them.

I took the scripts to Walgreen's. After waiting 30 minutes the pharmacist paged me. They couldn't find the doctor's name and number on their list. I told them that Dr Li was Dr Berliner's resident. So, then they started actually working on the prescriptions. An hour and a half later I paid almost $200 for a month's supply of Jim's medications.

I am exhausted but I wanted to document the day that I had today. At least I accomplished getting the ramp and the meds. Hopefully, the bed will arrive tomorrow morning.

June 2, 2011: waiting game

Jim is getting discharged tomorrow. The doctor gave us an extra day to get the home ready. I have one wheelchair ramp installed in the garage and I ordered one for the front door. The dining room is cleared out and ready for a hospital bed. That's what I'm waiting for today.

Aetna hasn't approved the bed yet. They won't approve an extra day at TIRR or ManorCare either. So, now I'm trying to rent a bed. I don't know what we'll do if we don't have a bed. Maybe he can sleep in his chair.

It's almost 11 AM. I was going to go to the hospital but I have to wait for the bed. I got the doctor to write out Jim's gazillion prescriptions. He had his resident do it and they are all screwed up. Luckily I read them over while I was still at TIRR. The doctor didn't have time to redo them last night. I have to pick the scripts up today and get them filled so I have them ready for Jim tomorrow.

I guess things will come together. It's just nerve-wracking right now.

Tuesday, May 31, 2011

May 31, 2011: final family rounds

Jim is scheduled to be discharged this Thursday, June 2nd. He still needs to learn to turn himself in bed. Plus, I'm trying to get the ramps for our doorways. His bed still hasn't been approved by the insurance company. But, I bet he still gets the boot on Thursday anyway.

I got him in and out of bed yesterday and I have a sore lower back to prove it. I guess a sore back will be the new normal for me.

Today Jim will be getting his last round of therapy. Tomorrow they will just be evaluating him - no exercise. I asked the doctor if he could at least have pool therapy. He didn't really give me an answer. I asked if we could have some of Jim's meds to take home. They said no - only the prescriptions. Some of these meds are hard to find. You'd think they could at least give me the prescriptions before his discharge date so we could be ready.

I called the outpatient place at Kirby Glen. There's a waiting list for pool therapy and Jim's orders haven't been sent over yet. So he can't even get on the waiting list.
I'll have to chase down Dr Berliner and get him to do that asap.

In the meantime, Little Stella provides me with lots of entertainment and challenges. She doesn't care for the bottle much anymore. She likes some at nighttime. Last night she followed the boys up to the top shelf of the cat tree. She cried for me to help her down. I hope she will be okay while I'm at work. She is full of energy and wants to play whenever she is awake. Even Piglet was playing with her a little bit this morning. She was under my dresser and Piglet was trying to reach her with his paws. Maybe Piglet will lose a little weight with this extra exercise.

May 30, 2011

Our dog, Nicky died on Friday, 5/27/11. Lupita took him to the vet for a checkup. He got so excited that he had a kind of heart attack. They kept him overnight and called the next morning to tell me that he died. He was so overweight, couldn't see or hear and was getting more incontinent.

I told Mom about the dog and she cried a little. But, she hasn't asked about him since. It's weird because the dog followed her all over waiting for her to give him more food. She seemed to spend all day feeding the dog and telling people to let him back in after he went outside. She didn't want the dog to be outside for more than a few minutes. Poor Nicky doubled in size after Mom moved in with us. She fed him candy, fruit, chocolate - whatever she was eating. Plus she kept filling up his food bowl all day long. She used to throw him handfuls of the cats' food until I put it out of her reach. I could not get her to stop.

His absence will make my life a little easier and the caregivers' job a bit easier, too.

Sunday, May 29, 2011

May 29, 2011: I'm not strong enough.

Dr Berliner wants us to have an all day pass in the hospital. Jim agrees with him. That means that I'm supposed to stay with Jim all day and night and handle his care all by myself. The staff is only available for emergencies. The doctor said it was very important that we have a trial run. I was going to try and do it tomorrow, Monday.

Yesterday I practiced getting Jim out of bed into his wheelchair. Then I practiced getting him moved from his power chair to his wheelchair. After that I worked on getting him back into bed. I tried to change him into his night clothes.

This morning I woke with a terrible back ache. I am not able to do Jim's care by myself. He'd have to stay in bed all day. I'd only be able to help him with his urinal and medication.

Jim tells me not to worry about it. That if I can't do it, I can't do it.

Tomorrow I am supposed to be trained by his therapists on transferring him from place to place. I have to be there at 9 AM. I didn't try moving him today so I could rest my back and save it for tomorrow.

The nurses have asked me if I have family around to help me. I told them all I have is my 90 year old mother. Some of the other patients, especially the Hispanics, have lots of family members visiting and helping out. I am very envious of them.

We will have to be hiring people to help with Jim's care. It's going to be very costly very soon.

I feel like I'm the only wife that TIRR has ever seen that can't do all the care by herself. They certainly act that way. It's better this time around than the first time. Then the therapists kept telling me to stretch Jim's arms and legs, do this, lift this. And I did it and I got hurt. This time I have a doctor's letter telling them that I can't lift more than 20 pounds. So, they've been taking it easier on me.

Nonetheless, Jim is being sent back home next Thursday, June 2nd. We will be left to fend for ourselves. Luckily I have Lupita. She has helped me so much. Today she massaged my aching back. She prepared the dining room for Jim to use when he returns home. He needs a special bed and lots of room for his commode, wheelchairs and just space to work around him while he's in bed.

I would really love to have Jim back home. But he isn't strong enough to do his own transfers and I'm not strong enough to help him.

I guess we'll live through his return home and all the problems that it will cause. I wish I could say that I'm looking forward to it.

May 28, 2011

This past Friday I worked for Carole. Nia told me to leave at 2. I went over to TIRR. Jim went on a little field trip with functional group. I sat and waited for him in the gym because I knew he had pool therapy at 3.

I was knitting while I was waiting. I kept looking for Jim. I looked up and thought I saw him walking in. It was another man, a therapist. He was about Jim's height and had his hair color. I immediately realized that it could not possibly be Jim. It felt like the whole catastrophic event occurred again. I started crying and went to the ladies room. I thought I had cried it out. But, I started up again when I was back in the gym. One of the therapists asked what was wrong. I said "my husband is paralyzed." I was going back into the ladies room and Jessica saw me and asked what was wrong. What could be more wrong?

I have only seen one other woman cry at TIRR and that was in the introductory meeting during Jim's first time in TIRR. I can't believe that I'm the only one grieving. Today I watched a mother and father taking care of their brain-injured son with smiles on their faces. I've seen mothers with small children pushing their paralyzed young husbands in wheelchairs.

Maybe I'm just too sensitive and too empathetic. The pain surrounding me at TIRR is like torture. I want to see Jim. Once I'm with him, I'm usually okay. He said he couldn't understand my feelings emotionally.

I told Lupita and she said she understood.

It is so painful every time I walk through TIRR's front doors. It is unbelievable to me that Jim is a patient there. The security guard greets me cheerfully when I walk in saying "have a nice day!" I haven't had a nice day in over 6 months. One time the receptionist said "have a nice visit." I thanked her and said I really appreciated those words instead of the usual nice day remark.

This has to be a nightmare. It can't possibly be happening to me and Jim!

Tuesday, May 24, 2011

May 24, 2011: 6 months today

We had family rounds this morning. I am trying to get Jim's discharge delayed by one day so he will be able to get more therapy. He is still scheduled for next Wednesday. I asked Dr Berliner if we could wait till the weekend. He said maybe Thursday. So, the big return home day is right around the corner.

It has been 6 months today since Jim's accident. He hasn't been home in all that time.

Today I spoke with a nursing agency about coming in daily for his bowel program. It will cost at least $50/day. I'm hoping we can go down to every other day. But, I guess it's not a bad price to pay for doing such a task.

I've been getting teary-eyed often again. There will be big changes when Jim returns and I worry about how things will go. My doctor increased my welbutrin to 3/day to get me through this period. These past months have been incredibly difficult for me. I wish I were stronger.

I wish I had family to support me here in Houston. It's hard to deal with this alone. I just need some compassion. Luckily I have some very good friends.

I was telling the nurse today about our situation. I haven't told anybody the whole story in a while. She couldn't believe it. Her reaction reminded me how extremely difficult this has been and I realize that I have been handling things pretty well. My job gets done, bills get paid, the house gets necessary repairs, pets get taken care of, cars taken in for repairs, papers filled out and I've found good caregivers for Mom. I search the internet for information on spinal cord injuries and for products to make things easier for Jim. On top of that I go visit Jim 6 out of 7 days per week for several hours and deal with doctors, nurses, therapists, etc. (I sound like my own little cheering section.)

Sunday, May 22, 2011

May 22, 2011: Sunday at TIRR

Weekends are really boring at TIRR. During Jim's last stint they had games on Sunday. But, the therapist who handled games went back to school and they haven't replaced her.

Jim remains positive and cheerful. I try but it doesn't work for me. I'm apprehensive about Jim coming home. Now his discharge date is June 1. TIRR considers Lupita the primary caregiver. Maybe they think she lives with us. I will have to be able to put Jim to bed at night. He won't want to go to bed at 4 in the afternoon.

This morning Mom was sitting in her chair when I got up at 7:30. I fed Stella and had my coffee. Then I went down to talk to Mom. I brought her a glass of OJ and told her to come on down to the kitchen. Around 10 AM my brother called and told her to get up and moving. So she finally made it into the kitchen by 10:30 AM. I gave her a couple of oranges. Lupita arrived at 11 and Mom told her I wouldn't feed her. Then she starts singing "Lupita, Lupita, you're so beautiful, etc,etc." It's nice she likes Lupita so much. I guess she thinks I don't do anything for her. When I come home in the evening Mom gets up and goes to bed. She has gotten so used to being waited on that she hardly does anything for herself.

I just see my future as being a servant to Jim and Mom. It makes me sad. It's so weird that I will be the strong able-bodied one at home. Jim used to complain that I always had something for him to do. Guess it's my turn now.

Tuesday, May 17, 2011

May 17, 2011: Compassion is painful.

I joined the Christopher and Dana Reeve Foundation for spinal cord injuries and paralysis. There are several discussion groups. I read the following quote and it made a lot of sense to me:

"One experience I have frequently when I read Trish so eloquently describing the life/her life as a caretaker, I feel so overwhelmed with helplessness that I want to quickly suggest something and move on rather than feel compassion. Compassion for that kind of suffering is painful."

I appreciate everyone who has offered compassion to Jim and me. I realize that it is difficult to do.

May 17, 2011: #2 family rounds

I got to TIRR at 7:45 AM today. First, I stopped at the cafeteria for breakfast to go. I won't have any time for lunch today. Rounds started at 8:15. (I got to the office by 8:45.)

Jim and I decided that Jim will go home after this stint at TIRR. Otherwise, he'd have less time at TIRR and then return to the nursing home. He is really progressing at TIRR so we want him to have as much time as possible. Right now he is supposed to be released on June 1st. That just isn't enough time.

When he comes home we will have to have handicap equipment all over the place. We have to get a hospital bed, transfer boards, ramps, bath bench, bedside commode, maybe a hoyer lift. I guess it's a good thing I didn't try to sell the house and move to an apartment (yet).

I worry about him returning home and being overwhelmed with caring for him. I guess I'll deal with whatever happens.

People are shocked when I tell them Jim became quadriplegic after fainting in the bathroom. They find it unbelievable. I do, too. It is such a freak accident. I keep waiting to wake up and return to my normal life. I guess we'll get a new "normal." But I will always grieve for the life we no longer have.

Monday, May 16, 2011

May 16, 2011

Jim walked across the pool using a walker today! It was really difficult for him but he did it.

Unfortunately, they canceled his pool therapy for the rest of the week. Jim has been the only patient in the pool for the last few days. They need to have at least 3 patients in order to keep the pool open. I told Dr Berliner about it. I hope he can do something to have the therapy continued. Jim has made the most progress with pool therapy.

Dr Berliner told us that he will try to get Jim another couple of weeks at TIRR but then he will have to go home. We will need all kinds of equipment for him at home. The therapists will be working with us on that.

He will probably continue his PT & OT as an outpatient at the TIRR center at Kirby Glen when he is discharged. The problem will be getting him and out of the car. Lupita will have to do the transfers. I'm not strong enough.

Dr Berliner has been great. He is really helping Jim and is keeping my stress level down. He doesn't just talk about the insurance company. He actually seems to care about Jim. I wish we had him as the doctor during Jim's first stay at TIRR.

Sunday, May 15, 2011

May 15, 2011

Here's my sweet little Stella having her bottle. She is so cute and brings some joy into my life. Today she was forgetting what her litter box is for. I made a litter box in the big red kennel. I hope she just didn't want to use the litter in the same box that she slept in. So, I've separated the boxes. Guess I'll see tonight.

Now I am in Jim's hospital room, waiting for Jim to be ready to go outside. It's a beautiful day - only in the high 70's. It will probably be our last pleasant day before the torrid Houston summer returns. I couldn't help thinking of what we would have been doing if Jim hadn't had his accident. We'd probably be by the water - Kemah or Galveston. We used just to like to go exploring.

The sadness is returning again so I have to stop writing.

Tuesday, May 10, 2011

May 10, 2011: Family Rounds

We had our first family rounds with Dr Berliner. Sonia scheduled it for 8:15 so I could get to the office by 9. The nurse, Anna and our new social worker didn't come. I've never met the social worker. She's on the 6th floor and access is limited because of Gabrielle Gifford.

Dr Berliner talked about the botox injections that he gave Jim. Jim is already seeing some decrease in the stiffness of his fingers.

Erin, the OT is going to work on teaching Jim how to cath himself and do his own bowel program.

Jessica, the PT will work with getting Jim in and out of a car.

They've given us a release date of May 25th. Of course, that is not long enough. But, nothing I can do about it.

They were impressed that Jim practiced with his manual wheelchair over the weekend. Weekends at TIRR are very boring. Jim might get one hour of group exercise on Saturday and that's it until Monday. So, at least he can practice on his wheelchair by himself.

Monday, May 9, 2011

May 8, 2010: Mother's Day gift

My son, Kevin and his wife, Tomoko sent me flowers for Mother's Day. They even had the delivery timed so that they came in the evening when I would be home. Aren't they pretty?

May 8, 2011; Baby Stella

I took more photos of Stella last night. Jim wants to see how she's doing. She is so tiny. I took one photo of her next to Mom's feet. She now is eating very well. The other kitties smell her and Buster hisses at her. The dog is the most friendly towards her so she chases him around the family room.

I put the pet steps next to the sofa so she'd be able to get back on my lap. She is learning how very quickly.

May 7, 2011: exercise

Here's a photo of Jim exercising with a manual wheelchair. He is trying to propel it with his feet. He was using his whole body to get it moving. He'd go one step and the chair would roll back two. Then he started putting on the brakes after one step. He barely was able to complete a half dozen steps. It exhausted him. This was only his second try on the chair so he will improve with time.

May 8, 2010: Photos

Jim started pool therapy last week. Here are photos of him in the pool at TIRR. The pool totally wears him out. But then it's 4th hour of exercise during the day. I told him that he will become a jock when he gets better.

Sunday, May 8, 2011

May 8, 2010: Mother's Day

At midnight Mom had one of her night terrors and woke me up with her screaming. She slept right through it. I couldn't go back to sleep so I watched TV until 1:30 AM. At 5:30 AM Mom was calling me from her room. She had fallen out of bed and was sitting on the floor.

She was all nervous and couldn't do anything to help herself get up. I tried using a sheet around her waist and pulling her up. But, I couldn't budge her. So, I called the paramedics. It took 3 firemen to get her standing. She was moaning and groaning and they were worried that she was injured. I told them that she wasn't hurt and they left.

Last year Mom fell when Jim and I were at Texas City. She pressed her first alert button. The paramedics came and took to the ER. She hated that. I told her if she kept crying that she'd have to go to the hospital again. At least she listened to me.

Mom went right back to sleep but I couldn't. It's 8:50 PM and I'm planning on going to bed very soon. Stella just woke up so I'm stuck with her for a while. But she'll eat and play a little and go to sleep.

I got to TIRR around noon today but I had to leave at 6 because I was so tired. Lupita was baking me cookies when I got home. She has been a wonderful to all of us.

Around 8 PM the doorbell rang. It was a flower delivery from Kevin & Tomoko! I was happy that I was home when the flowers were delivered. Thank you, Kevin and Tomoko.

I was feeling sorry for myself. There were family gatherings at TIRR. But, I was the only family visiting Jim. The flowers have cheered me up.

I have to go to bed. I've got pictures to post - tomorrow.

Thursday, May 5, 2011

May 5, 2011

Jim has moved again. He got a bed by the window. He's in 506B now. I think he must be through moving around now. I had asked the staff to be on the lookout for a window side bed and they came through

Tomorrow I have to bring extra yarn and needles with me. 2 of the ladies on the floor want me to teach them how to knit. I'm also going to make all of Jim's nurses, techs and therapists scrappy flower pins.

I went to visit Jim after work today. I got there in time to see 3 of Jim's doctors gathered around his bed. Tomorrow he's scheduled to get botox treatments in his left hand, lats, and right & left pecs. Botox is supposed to help decrease the tone in these muscles. Hopefully, it will work.

Dr Berliner wants to start Jim on the treadmill. The patient is put into a harness and put on the treadmill. Techs then move his legs for him so that his muscles can figure out what to do.

Wednesday, May 4, 2011

May 4, 2011: Jim moved to 5th floor.

The pictures are of Super Dude (aka J.D). He was one of Jim's techs during his first stay at TIRR. He was so good at his job that Jim named him Super Dude. JD enjoyed the nickname. I told him that he needed a cape. He said he wanted a mask. I made this red mask and put the initials SD on it. He seemed like he really liked it.

Jim had family rounds with Dr Wenzel today. I didn't take time off to go. This is his last session with her. He is now Dr Berliner's patient. Jim feels more comfortable with him. I hope Dr Berliner will actually work for Jim. Dr Wenzel was always talking about the insurance company. She gave Jim a hard bed during his first stay. He was in lots of pain. She wouldn't change his bed.

When we saw her on 4/5 I told her that Jim will need an air bed when he returns to TIRR. She said that sometimes the insurance company won't approve an air bed.

Jim went back into the hospital, got another hard bed and his pain started again. His nurse found him an air bed and his pain is gone again. Now, why wouldn't the doctor order him a comfortable bed?

Jim was moved to the fifth floor yesterday. The fifth floor is for spinal cord patients. He is now in 509A. The A beds are next to the door - no window and less space. On the plus side, he gets to have some of his former techs and nurses - including Super Dude.

Sunday, May 1, 2011

May 1, 2011: Now for the good news!

When I arrived home yesterday evening Lupita was holding my kitten who was limp and near death. Stella took a down turn during the short time that Lupita left her to take Mom to the hairdresser.

I thought that I was going to hold her while she took her last breath. She started jerky movements. I thought it would be best to put her back in her carrier. She looked like she was experiencing death throes. Then she got quiet but was still breathing.

Finally I had to go to bed. I took the carrier with me and put it on the bed. Stella woke up and cried. I gave her some goat's milk and held her for a long time.

This morning she woke up hungry and healthy! It is wonderful. I fed her and held her. Now she is in her carrier on a heating pad taking a cat nap.

I might take her with me to the hospital today. I think Lupita will be nervous about caring for her. I'll have to sneak Stella in and won't be able to stay very long.

Jim's roommate left yesterday and we moved Jim to the window side of the room. Hopefully, he won't get a new roommate today so it will be easier to keep Stella in the room.

May 1, 2011

I spent yesterday afternoon and evening at TIRR with Jim. I didn't want to go. Being there brought up the old memories of our first go-round there. There is so much pain at that place. The staff actually act quite positive. There are photos along the hallways of patients who had been through the TIRR experience and a write up of what they are doing now. The hospital tries to be a positive happy place.

It doesn't work for me. Jim is 100 times better now than he was during his last stay. But, I'm not. I still cry and grieve for my lost way of life. I come home and see the Texas Highways magazine that I had subscribed to in October, 2010. We had plans for little weekend trips in Texas. We were best friends experiencing happy events together. Now we are best friends experiencing physical struggles together.

I know that am lucky to still have him. Jim came close to death in the beginning. His heart rate would dip into the 30's.

TIRR is the right place for Jim. He sees a specialist every day. The therapists are trained for spinal cord injured patients. Yesterday a Metro bus came to the hospital to teach the patients about the bus system. Each bus has 2 wheelchair places. The driver will tie down the chair and be sure that the passenger gets on and off the bus safely.

I guess my big problem is actually my loss of blinders. I see so many people at TIRR whose lives turned to crap in just seconds. It could happen to me, my sons, anyone. At the nursing home I saw the pain of getting old. The only escape from old age is to die young. There is no escape or luck to get past these realities.

Friday, April 29, 2011

April 29, 2011: My new baby

Here's a photo of the baby kitten that I found on Monday in my doctor's parking garage. I named her Stella after the doctor I was going to see.

She seems to be thriving. She was taking goat milk very nicely. Today she doesn't seem to like it so much.

She wants to be with someone all the time. Last night I had her in the large pet carrier next to me in bed. She slept through the night. I was afraid that she would wake me up a lot.

She's been pretty demanding today. She likes to get out of the cage and crawl around. She crawled under the filing cabinet and seemed to be stuck. She has to be watched all the time that she is loose. I think I need a big playpen for her!

April 29, 2011: Back at TIRR

Jim returned to TIRR on Wednesday, 4/27/11. The admissions office wanted him there as early as possible. Luckily Amy wasn't Jim's nurse so we didn't have to deal with her. The admissions lady called me on my cell and wanted to get in contact with someone at Sharpview. For some crazy reason she thought I was bringing Jim to the hospital myself. So no one called for an ambulance. Finally I convinced Nishwani that we did indeed an ambulance. It arrived around 1 PM. I stopped at the house to feed the kitten and then drove over to TIRR.

Jim was placed in the overflow fourth floor. Most spinal cord patients are on the fifth floor. The staff wasn't even ready for Jim. He did a lot of waiting around in bed. Then the doctor's intern came in and performed the ASIA test on Jim. He said that Jim left as an ASIA B, C-4 in January. He tested ASIA C, C-5 this time. This is a big improvement!

On Thursday he was tested by the OT and PT. He got very little rehab that day. Today he had OT in the morning. I was there for his 2 PM PT with Jessica. She continued testing him and then they did some therapy. Jim was able to stand up using the EVA gizmo. He said it was easier than using the parallel bars at the home. He did really well as you can see in the photo.

He was in pain on Wednesday night in TIRR's hard bed. He had no pain at the home in his big bed. His morning nurse, Angela got him an airbed that folds up like a chair. He was much better Thursday night.

Tirr is doing sonograms on Jim after he uses the urinal. They say he doesn't empty his bladder all the way so then they catharize him. We asked the doctor to give him more time to do it on his own.

I spoke to Dr Berliner today. He said he would take over Jim's care but first he has to talk to Dr Wenzel. He says he is not afraid of stepping on toes. Jim likes him much better personally. He seems to be much more positive than Wenzel. Berliner is also working with Rice on the walking machine trials. That sounds promising.

Jim was so tired this evening from lack of a good night's sleep that I was able to leave at 6:30. I came home to take care of my baby kitten.

Tuesday, April 26, 2011

April 26, 2011

I received a call from the admissions office at TIRR around 1 PM today. There was a bed available but I had to get Jim there by 6. I said I wouldn't be able to do that. The woman, Revelyn(?) said she'd see if she could hold it until tomorrow. I called her back at 4:30 and they will hold the bed for Jim. He needs to be there late morning or early afternoon tomorrow.

I think this proves that TIRR is has a strong connection to Aetna. I have heard about people waiting weeks to get a place at TIRR. Aetna said they wanted Jim back at TIRR and they got it.

Jim has been doing so well at Sharpview. I am a bit apprehensive about this move. I hope we will be able to switch doctors. I dread hearing the repetitions that they make at TIRR. It's like there are certain things that must be said so they repeat them over & over again. The doctors and therapists seem so regimented.

Lupita and Jimmy were visiting Jim this evening. They were kind enough to pack up a bunch of Jim's stuff and bring it over. There's still LOTS more to pack tomorrow. I plan on getting there around 8:30 AM.

I'll have to take my baby kitten with me tomorrow morning so she can get her bottle. She went to the office with me today. I took her to the vet right after work. She thinks Stella is between 2 & 3 weeks old. She tested negative for feline hiv, heartworms, etc. She had fleas and I treated her with stuff from the vet already.

The vet suggested feeding her goat's milk. She really likes it. She is so cute drinking from her little bottle. I'll have to try and video her. She is the most precious little baby girl.

I had hoped to rest a bit this evening. Instead I'm washing Jim's clothes, putting some of his stuff away and trying to pack up what he will need at TIRR. I'm exhausted again. I am so tired of being so tired!

April 25, 2011: I found a kitten!

I had a doctor's appointment yesterday at 11:15. After I parked the car I was walking across to the building's entry way. Then I heard some sad mewing. There was a little baby kitten all alone on the walkway near the elevator.

Of course, I had to pick her up. She is tiny - maybe 3 weeks old. I went back to my car and got a tote bag. I put her in the bag so building security wouldn't try and stop me. She stayed quiet all through my appointment. I've named her Stella because that's the doctor's name and it's cute.

I went to Petco and got kitten formula, bottles and a soft carrying case. I took her to the nursing home with me since she needs to be fed every couple of hours. Everyone loved her.

This morning I have her in my office with me. I'm taking her to the vet right after work. I hope she gets a clean bill of health. She is just the cutest little calico kitten.

Jim called me this morning to check on her. He said that I looked so happy holding the kitten. I hope that I can make the time to care for her.

Monday, April 25, 2011

April 25, 2011

I need to be cleaning up the house, not playing on the computer. But I feel like just sipping coffee and relaxing. My sitter of the day, Magda, will be arriving at 10 AM. She puts Mom right into the shower so I have to wash up before she gets here.

I would love to spend the day at home today. But, when I'm not with Jim I feel guilty and I do miss him. I'm going to compromise today. I have an appointment with Stella at 11:15. I'm going to come home after that and do some cleaning. I can't work too hard because I'll be too tired when I go visit Jim. There is always so much work to do when I visit him. I clean up his room, fetch his water bottle, find a bib for him, get his night things ready, etc. etc.

I'm trying to keep myself from burn out. It's tough.

Sunday, April 24, 2011

April 24, 2011

Five months ago at this time I was sitting in the ER while Jim was getting x-rayed and MRI-ed. That night began this terribly difficult journey.

This may have been our last weekend at Sharpview. Jim will admitted back to TIRR as soon as a bed becomes available. I carried some of his things home with me to get prepared for the move.

Jim was acting very bossy today. He wanted me to wait at the back door while Florence rescued a baby bird in the rear courtyard. He has the room next to the back door. I wanted to watch her out the window in his room. He was getting all upset that I wasn't doing what he wanted. When she started heading back to the door I got up and let her in. Maybe she waited 10 seconds for me to open the door.

I think he really wants to be in control. He must feel so powerless stuck in bed or his wheelchair. However, even though I understand I don't want him to get angry with me. I felt like just going home. But, I stayed with him until 7 PM.

We just sat around all day. We were feeding the birds when we were surprised by Lupita wheeling Mom up the sidewalk. She misses Jim, too.

After they left we went back inside and talked with Marty, the guy who hangs out at the nursing home. Jim was happily talking about music with him. Marty can play a song by ear on the piano. I sat listening to them while I sewed a little doll pin.

After Marty left we went back to Jim's room. Jim got his blood sugar checked and got his meds. Then we had another surprise. Jim and Honey came to visit. They were so sweet to come and visit us. They stayed until Jim's dinner tray arrived.

I helped Jim with dinner and set up his teeth brushing stuff. He got mad at me again because I hadn't left the bathroom door all the way open. He had to push it with his chair.

It's hard enough to spend 99% of my free time with Jim at the nursing home. It's even harder when he gets mad at me.

I'm feeling stressed because I know that his time in TIRR will be difficult. TIRR tries to get the family to do all the day to day care of the patient. Last time I injured my back right away and it still hurts. TIRR doesn't even provide soap or a toothbrush for their patients.

I worked very hard caring for Jim when he was at TIRR. I'm not looking forward to injuring myself again. Plus, it's emotionally difficult there. The doctor and therapists keep trying to push you out the door. I don't understand why. They know spinal cord injured patients need lots of care. Why are they in such a hurry? Is TIRR somehow indebted to an insurance company?

When we saw the doctor on April 5th she seemed unconcerned about Jim's need for treatment and overwhelmingly worried about the insurance company. That kind of behavior is emotionally draining.

TIRR has superior equipment and Jim will see a doctor every day. I hope it will be a more positive experience for both of us during his second round at TIRR.