March 28, 2011

At 8:30 this morning I called the home and spoke to Tina, the head of nursing. I told her that I was concerned that Jim would not be taken care of until I came in later in the morning.

I told her how Jim's call light was ignored on Sunday afternoon.

Tina asked me why Amy and I have problems every weekend. I told her that I've only had problems with her for the last 2 weekends: once when she didn't call the doctor for Jim and didn't return my phone call and then this past Sunday when the incident with her happened.

Tina said she would go check and make sure that Jim was cared for. When I came in later Jim said after 8:30 he got attention from Florence. Amy just kept her head down. I had my phone out on video mode every time I walked past her just in case she started screaming at me again.

Amy has a very loud voice and is hard to understand. Jim said that after I called Tina, Amy became very quiet.

So, I guess we have a truce. I think the home should fire her but she's still there.

Attached are photos of Jim in front of the home. He is showing off that he can hold his cup. We were sitting on the porch feeding the birds.

March 27, 2011: Crazy Nurse Day

I put a note on Jim's door yesterday explaining his condition. Some of the staff thought Jim had been paralyzed for years. I wrote about that and about how I can't do all the physical stuff needed to take care of him.

I was hoping if the staff understood our situation they would treat us better. Today Amy, a nurse told me that I had to take it down. That it was against hippa laws. I tried to explain to her that I had Jim's permission to post it. She actually moved herself down the hall to tell the manager on duty, Nishani. Nishani came down and told me that I had to take down the sign because of hippa laws. I took it down just to make them happy. You would think they'd know that they were the ones bound by the hippa law, not the patient and his family.

I was angry with Amy. Last week she couldn't be bothered to return my phone calls or to call the doctor when Jim was peeing blood. But, she had the time to get the manager today. So, when I was going out of Jim's room, I saw her and made a comment to that effect. If I had had time to cool down, I wouldn't have bothered.

Amy got very defensive and had a gigantic fit. She told me that I was attacking her. She would not admit that she failed in her care for Jim or not calling me back. She kept yelling at me and then she went to complain to Nishani again. I was walking past them and tried to explain myself. Nishani didn't want to get into it. So then Amy called Tina, the head of nursing and told her that I was doing something illegal by posting the note. It was so stupid that I just kept on walking past.

I went back into Jim's room and fed him lunch. Jim pressed his call button at 1 PM. It rang and rang. Finally at 2:15 I went looking for Dolores, the CNA. She was down the hall and I told her that Jim's call button had been on for one hour and fifteen minutes. Dolores said that she had been at lunch. But, she only had a 30 minute lunch break. I think that Amy told her to not come in and help Jim. Dolores came in to get Jim out of bed and brought a nurse from another wing for "support." This nurse, Gertrude had no idea how to use a hoyer lift. So, I don't know why she needed her. She just kind of watched the process.

It would be nice if the "home" would tell Amy to apologize to me. But, I doubt that will happen. It's a shame. The CNA's are mostly hard working But, the nurses are substandard.

I think Jim will be sent back to TIRR again soon anyway. Hopefully, he will get well enough to come home after that.

I write about this event so I will have a record of what happened.

March 26, 2011

Jim was a lot better this morning. He wasn't swollen anymore. I don't know why he was retaining fluid yesterday. He said that he didn't eat anything salty. I told him he should drink more plain water instead of sugar free crystal light. I was going to bring him some liver from Luby's but it had closed down. I brought a double meat cheeseburger instead. He needs more red meat and protein to bring up his red blood cell count.

He felt good enough to go outside for a little while. We tried to feed the birds but they just looked at us.

We played a game in the main lounge and talked to Marty. Marty is a volunteer. His life seems to revolve around Manor Care Sharpview. He said he has volunteered there for 20 years and spends about 40 hours a week at the home. His volunteer duties seem to consist mostly of sitting around watching TV at a high volume.

Here are photos of Jim in his chair. It's fire engine red with fancy hubcaps. Jim can get so comfortable in this chair. The seat has lots of gel, has side panels for his legs and tilts way back. When he tilts the chair back and raises his legs he gets a really good weight shift. Shifting weight helps prevent bed sores.

At 5 PM Lupita drove with Mom to pick me up. The three of us went to Salt Grass Steakhouse. It's nice to do some "normal" things. I brought back prime rib for Jim.

March 25, 2011

When I arrived at the home today I found Jim laying down on the mat in the gym. He had a low grade fever and said that his whole body hurt.

His hands were swollen and wouldn't bend. He said he felt "puny." The nurse gave him some tylenol. His urinalysis and blood tests came back okay. Though, his red blood cell count was slightly below normal. I think it was because of all the blood he lost during last weekend.

He started feeling a little better and we went to the little party in the dining room. The home celebrates birthdays once a month. They served cupcakes and ice cream. There was also a couple performing. Mostly the man sung and the woman played the keyboard. We heard a lot of the same music that they played last month. The picture attached shows the dining room with the duo in the background.

The PT manager told me that Aetna wants Jim to be reevaluated by TIRR. That will probably happen next week some time. TIRR will send someone to the home to test Jim's strength. He has an appointment with Dr Wenzel on April 5th. He might possibly return to TIRR before then.

March 24, 2011

I had to look for Jim's credit card this morning to pay the tax people. He had receipts from our last trip together in his wallet. We went to New Braunfels the weekend before his accident. It brought up the memories of Jim walking and driving, being the strong one. As a result I'm teary eyed this morning. But it's a normal sadness. I'm not having any suicidal thoughts. My medicine is working.

I saw a new therapist on Monday. She said I was coping well and doing everything that I could to help Jim and myself. I have paid up all my out-of-pocket fees so I don't have to pay a co-pay. Since it won't cost me more money I made weekly appointments with her. I need all the help that I can get.

She told me that some people's reaction to a tragedy is withdrawal. They can't cope or empathize with the other person's pain or needs. I guess that's how my Andy is reacting. When I told him to think of how he would feel if Nina got hurt, he told me that it would never happen to either of them because they take good care of themselves and are vegans. I do hope it never happens to either of them. But, it was an accident, not a result of Jim's lifestyle. My therapist, Stella is going to help me with grieving about Jim and Andy. I don't know what the future holds for either of them. Jim is getting stronger. There is still hope that he will walk again. Andy hasn't called me in a couple of months. I miss him but I'm leaving him alone. I hope he will come to terms with how things are now and be a part of my life again soon.

I know that I am so much better now. I'm eating healthier, dressing nicer and am interested in my hobbies again. I'm trying to enjoy the time that I have before Jim is sent home. It will be so difficult then.

I'm not going to visit Jim after work today. It's too hard after a full day at the office. I'm sending Lupita to massage him. The days that I go straight home after work seem like a mini vacation. It is so much work when I visit Jim. I have to keep jumping up when he needs something and help the CNA's with moving him around. At least last night he stayed in his chair longer so he fed himself, brushed his teeth and washed his hands.

March 23, 2011: Jim's new power chair

Jim's custom powered wheel chair arrived today. It was delivered by a very nice technician, Val Torres. He is the best employee of Custom Healthcare that I've dealt with. He spent a lot of time explaining and adjusting Jim's chair.

TIRR uses Custom Healthcare. I have not been pleased with the company at all, except for Val. First, they didn't keep up with getting the insurance paperwork done. I had to do the legwork after somebody finally gave me the order number at Wheelchair Professionals. I got all the paperwork done on March 3rd, got insurance approval and it was delivered 3 weeks later. The same employee(Kathy Mc)who dropped the ball on the paperwork called me on March 22 and said that I owed $1,045.00. She said it was to fulfill Jim's deductible. I told her that we don't have a deductible but I gave her my credit card number so they would deliver the chair. Kathy said she would check our insurance again and let me know. She never called me back. Today I called Aetna, who called Custom Healthcare and told them we did not owe the $1045.00. Kathy didn't call me. I called her and told her to issue my credit ASAP. I'll give her until Monday to do it and then I will have to call my credit card company to cancel the charge.

But, the good news: Jim's new chair is so much more comfortable than the loaner chair. It has a nice cushier seat, better headrest and the legs raise up for better weight shifts. It's a bright red with red "hubcaps." Custom Healthcare did get the correct chair ordered.

I don't know where I put my camera. When I find it I'll add a photo of Jim in his pimped out chair.

March 20, 2011

Saturday evening Mary and Rod came to visit. We had a good time playing "password." On Sunday Kevin and Laura came and we played "password" some more. We love having visitors!

I bought Jim some stuff at Academy - wrestling gloves, a bottle and a rear view mirror from the cycling department. The gloves are to help with grasping objects. The bottle has texture on the sides so Jim can hold it. It has an easy to open top to drink from.
These same things for these uses cost a lot more at health care websites.

The rearview mirror may not work on the wheelchair. I'll wait and see if I can attach it when Jim's own wheelchair comes in.

Being with Jim is exhausting. I can never rest. He always wants or needs something. My back was killing me. He didn't want to move around much because he was afraid of bleeding again. He didn't bleed all day Sunday.

He works very hard during PT and OT. I think he needs to work hard all the time - brushing his own teeth, feeding himself, etc. I bought the stuff from Academy to help him be more independent. I was nice to him all weekend. But now I'm going to insist he do more for himself. It's the only way that he'll improve. He says that it takes so long when he does things for himself. Too bad - he needs to learn how to do things better and quicker by practicing.

I'll be tough taskmaster today - unless he's bleeding again.