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.