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.