ruthpill

Stroke Caregiver - female
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  1. ruthpill

    December the 1st

    By ruthpill,

    Today is the first day of December. this brings such memories. William had his stroke on Dec. 13, 2008. It has been along journey. But, it is simply amazing how far he has come.
     
    I was just reading that you can expect the most progress in the first months. I have found that with William he did not have the most progress in the first 3 months. He actually had more progress after he came home. He was in the SNIF unit for 2 months and came home in a wheelchair. Now, I do not use the wheelchair in the house. I use it when we go out.
     
    I started the pool in May of 2009. 5 months after his stroke. He had to use the chair lift to get into the pool. Today he can walk down the ramp into the water. I assist his leg sometimes. But, often he moves his own leg. I am moderate assist.
     
    We started in the pool and he could only stand at the edge and I would move his leg. today, he can walk the pool without any device. I do help move his leg when he gets tired. Today we make 50 crossings of the pool. It takes us about an hour. He really gets a workout.
     
    It is amazing!!! He does not get as exhausted. He still does get tired but we are working on stamina.
     
    William play Majhjong on the computer. We started with one called Nanjing. This is a matching game. He does it so much better today.
     
    I have taught him 2 other variations of Mahjong. He is able to try and play and get a better score each time. When William 1st came home. he could not play the simplest of games.
     
    I have him playing pyramid solitaire. you have to match totals of 13. He is doing well and can recognize 8+5, 9+4, 10+3, etc. He is getting better, He does not want me to help him. I need to play my own games.
  2. ruthpill
    The day was too long. But, we survived. It was more a shopping trip. There is not that much that you can do in a wheelchair for 10 hours.
     
    The day was beautiful. It was wonderful to spend the day outside. We do not usually spend much time outside. We were out or doors for hours. WE sat and watched the boats come in and out. This brought back fond memories for William he used to boat in his younger years.
     
    We got tickts to ride amusement stuff. But, the only one that I could manage with William was the train ride. They acutally had one a wheelchair accessable cart. The boys had to manuever William up their ramp. I tried but it was too steep for me. William was scared but he tried. We got him into the cart and he was on the train directly behind the engineer. He actually ended up enjoying the ride.
     
    We went and fed the stingrays at the aquarium. That was fun. William stood by the side of the pool and fed the sting rays. I tried to have him remember when we fed the sting rays at one of the islands. But, he couldn't remember.
     
    He finally got tired of me pushing him ove the bumpy bricks. I was getting tired too. We were supposed to to meet for dinner at 5:30P. William was thirsty and I noticed that the drinks at the kiosks were as much as going into the restaurant. So, i took William in and had a big beer and I ordered an order of crab nachos. There were delicious and large. Well, we were not hungry for dinner. William wanted a piece of Key Lime pie to top off our appetizer. We definitely did not need any more to eat.
     
    We sat and watched the boats and watched the kids ride the scary rides. We ended up giving our tickets away. I am not an amusement ride person.
     
    We spend some time listening to music and we tried the haunted house.
     
    It was so dark! I asked if it was wheelchair accessable and they said yes. I could barely make it to the initial entrance. The girl had to keep telling me where to turn. Then she tells me to follow the carpet. I can't even see the floor. We turn around because she says that it will be difficult for us. I can barely make it out. The rest of our group told me that they had a hard time and I would probably still be in there trying to get out.
     
    In the evening it was pretty because all of the lights got turned on and then it got chilly. I was smart and brought William's sweatshirt. I just didn't have mine. It wasn't bad.
     
    It is 8PM and I cannot figure out what else to do. We have 2 more hours. We watch jugglers and the crowd. William wants to sleep. But, I told him that might be difficult.
     
    Finally the bus comes. We get on and I fall asleep. I had a hard day. William does not even sleep. I usually stay up.
     
    I did love the day. Today is Saturday and we have all ready had our day at the pool. We need to relax today. and get ready for church on Sunday.
  3. ruthpill
    Today we get to go on a little trip to Kemah. Let's see if William is going to behave. We are going with the YMCA on a county bus. This is such a nice service. It is wheelchair accessable. William & I are the only ones that go with a wheelchair. We leave at 1:30P and get back at 10P. This will be a late day excursion. I am letting William sleep in this morning and I have cancelled our pool outing. I do not need a cranky tired William on my hands in Kemah.
     
    I have insisted that he let me give him a shower before we leave today. He has agreed but, reluctantly.
     
    He is always scaring me with the "I think that I have to go to the bathroom message". I gave him some miralax yesterday and he has all ready had his daily bowl movement. Now, I don't have to worry about that today. The things that we need to prepare for!
     
    We get to see a haunted house. I do not know that it will be wheelchair accessable. But, that is on the agenda. We shall see and I shall let you know. Joe's crabshack is on the agenda for dinner. I am planning on getting a large platter and sharing it with William.
     
    I have started taking William to the pool at 8AM. This means that we are working out in the water from 9 to 10A. This is such a perfect time. The pool is empty. We don't have to get up at 5AM in the morning. Somehow my circadian rythmn changes in the fall. I get up later. This is nice. It is cool in the mornings and it is nice to sleep in a little.
     
    I have 4 days off this weekend. Yesterday, Thursday, we went and had a picnic at the park after the pool. Fall days are too beautiful! We need to be out enjoying the weather.
     
    At first I was going to get us subways. Then i decided to stop at the grocery store and check out their deli. William spotted his favorite Antoine sandwich. I let him get that. I bought some chicken, chips, Limeade, cookies, bananas, and William insisted on Hershey's bars. I got the little halloween Hershey bars. The one thing that William knows about me is that change is the name of the game. Subways were expected and then something else happened.
     
    I told William that I loved potatoe chips and banana's. He told me that his weird combination was chocolate and bananas. I had bought the little mini banana's.
     
    I took William to the library after the park. He had to walk a bit from the park bench to the car. He was too exhausted to come into the library. I took him home and put him to bed. He slept until 4P.
     
    I have gotten my camera charged up and ready for our trip. I know that this will be fun. I just need to bring a sweatshirt for both of us. It gets cold in the bus and may get chilly tonight.
     
    I can hear William snoring. I am trying to download Epocrates ( a pharmacy website). It is excellent. I want it on my palm. But, I have forgotten how to do that. I have not used my palm in awhile.
     
    I did enjoy Mikes funny story. I agree. we do need to have those stories. At the minute I canot think of one to share. I am thinking that I have a load of laundry in the dryer and I would like to go to the pool for myself. But, I am not sure that I will have time. i need to work on the computer.
     
    But, I do have all weekend. What a treat. I have this wonderful fall weather. Nothing could be better!! I am blessed.
    Ruth
  4. ruthpill
    I let William sleep in this morning. I got him up about 8AM. I told him that we needed to get moving. I wanted to get the pool done. He was amenable to that. We get to the YMCA and he wants to try to go to the bathroom. OK. Nothing happens. Now, I get him into the water. It is nice and warm today.' 5 minutes into our workout. William starts in. He wants to leave!!! This just rubs me the wrong way. It takes me an hour to get him ready and into the water. I cannot do only 5 minutes. Now, he starts nagging me about leaving. I am so frustrated. The pool is empty, hardly anybody there. I coerce him into walking and doing more. But, I am called a fanatic and he wants to leave. After 30 minutes of this, I say. he can go.
    I am so frustrated and mad. I give him a shower. 30 minutes. He wants a cup of coffee after the shower. I say no. We are going home. You wanted to leave quickly. Quickly we are leaving. I tell him that he will now get to spend the rest of the day in bed. I am not going to break by back and take him out and about. I had planned a movie and outing today. But, no longer. There are consequences to his not working with me regarding therapy.
    Luckily, our friend will be coming to take him out to lunch. I need a break from William.
    he is in bed. I had to have a talk with him, He needs to understand that he needs to work at therapy. He needs to concentrate during therapy. There is a brain and muscle connection. His fussing during therapy means that he is not concentrating. I am fanatical with therapy. But, i get tired of it somedays.
    Today is one of those days.
    Ruth
  5. ruthpill

    a break from regular PT

    By ruthpill,

    We are taking a break from regular PT. OUr regular therapist is working inpatient. We need the break. Twice a week really uses up free time.
    This means that the pool is very important. This is still happening 3-4 times week.
     
    Today , we got to the pool at 9AM. This nice cool weather is sleep in weather. William did not want to go to the pool, but he did not give me a hard time. After a shower, we have a cup of coffee and then I checked the quilt group. We stopped and visited awhile.
     
    I was going to make lunch and then decided that buying lunch was a better idea. I have a conference call every Thurs. The last two Thursday have caught me at a restaurant. I told William that today , i was going to buy a subway sandwich and we would eat at home. These conference calls mess with my free time. I added cantelope, fritos and a cookie. Delicious.
     
    William is resting in bed. He gets tired after the pool.
     
    Our church is out of Stephens ministers. So a sister church has contacted us and will take care of William and myself. This will be a person that we will talk with.
     
    I just got a call from the home health agency. We will be getting new caretakers. One of the girls is going to join the service and the other one got a job at the hospital. I cannot wait until William does not have a need for caretakers.
     
    I have been chosen for jury duty the end of Oct. I said that I was a caretaker, but that didn't stop them from calling me. Just one more day to hire a caretaker.
     
    Ruth
  6. ruthpill
    Physical therapy will continue for another week. The therapist said that William is progressing and she wants to continue therapy. She starts working on inpatient and therefore we will be taking a break.
     
    She has William trying to take weight on his left leg. He has a tendency to put more weight on the right leg. I cannot imagine how it feels. The left side does not have feeling.
     
    We are still going to the pool 3-5 days of the week, depending on my work schedule. I do take him to the warm therapeutic pool. William will walk from 30 to 45 minuets. He is totally wasted after the pool.
     
    We used the e--stem on his arm. He complained of pain. It is amazing the e- stem got rid of the pain. The arm started to hurt and it looked odd. The color was different and the ar-stemm was cold. The e-stem got he circulation going in the arm.
     
    I have started to use the bicycle pedals again.
     
    Everybody says that it is amazing how much William has progressed. William usually goes to the pool early in the AM. 5:30AM. He doesn't give me that hard a time. It is amazing!!
     
    Ruth
  7. ruthpill
    Saturday we had a great day at the pool. It was off to a rocky start. William said that he was really comfortable in bed and did not feel like leaving it. I said that we had lots to do. I wanted to get started with the day. We had to do the pool then a movie and lunch. Well, the movie and lunch cinched it. That got William out of bed. We went to the pool and he walked really well. I have started incorporating arm exercises. On the way out of the pool, William tells me that he really want to get into the hot tub. I have avoided the hot tub, because there are 4 steps into the tub and that means 4 steps to get out. I wasn't sure that I could get William in and out by myself. But, he was insistent. He wanted to try. He wanted to walk from teh pool to the the hot tub. I used the wheel chair. I get him down one step, then two steps. I told him to sit down and see if the water was too hot. Then I let him go down one more step by sliding down one step on his butt. He said that he felt that the hot water was good for his leg. I was fortunate that nobody was using the tub. I had William sit on the steps going in.
    That is one more accomplishment for William.
    William is usually very tired after the pool. But, he was excited about the movie and eating out. He dedided that we should go to a movie first. It was early and I was not sure what would be playing. WE went and checked the theater out. They had a movie with Robert Duval, Bill Murray and Sissy Spaceck. It was good. I had not heard about it. It is about Robert Duval a hermit in Tennessee who plans his funeral. William said that he had a hard time understanding the movie. I explained it to him later.
    William does that sometimes. He has a difficult time following movies and then gets bored and flips from station to station.
    William said that he did not like Sunday service to day. He said that he did not like the Jeremiah study. He is not is in a good mood. Very strange for a Sunday. He told me that he does not want to go to the pool. I made an agreement with him. No pool today. But, Monday, no excuses, pool early. He agreed. Since , we did not go to the pool. I drove over to my favorite Chinese restaurant. Had steamed fish, cashew chicken, tofu and bambooshoots. It was delicious. William said that he was not hungry, but he ate his entire dish.
    We get home and William says that he is tired and depressed. I suggest that he take a nap. Hopefully he will feel better when he wakes up.
    He is napping. I hope that he feels better. I suggested that he take some miralax. But, he only took a sip. This is for his constipation.
    Ruth
  8. ruthpill

    I had a scare....

    By ruthpill,

    Sunday, William did not have the best day. He was depressed and confused. I left him in bed to sleep and told him that I was going to the YMCA to swim.
    The front staff come and find me in the pool. They tell me that somebody has called and said that William had a stroke.
    I cannot breathe. Oh, No. Not another stroke! he is just getting a little better. What kind of set back will we have.
    I try to call home but no answer. I throw on some dry clothes and drive home.
    On my way home..I start to think. Who called??? Who knew where I was?? Only, William did. Perhaps it is not too bad. William had to tell somebody where I was. But, who called?
    I drive up to the house and expect to see the ambulance. No ambulance?
    What is going on?
    I rush into the house.
    William says "I need help to go to the bathroom."
    William had called the YMCA and asked them to get me. He said that he told them that he had a stroke and wanted his wife. They had told him that he should call 911.
    Miscommuncation. I lost 10 years of my life over that one.
     
    William apologized for the scare.
     
    I am so glad that is was not another stroke. That would have been a catastrophe. I don't know that I would have been able to handle that.
     
    RUth
  9. ruthpill
    William had a great day at physical therapy. The therapist said that she is very pleased with William's progress. She has noticed that William can move his left leg. We just need to work on it. He is able to walk with controlled supervision. Just a short ways. But, this is a miracle. I credit this to our hyrdo-therapy. We go to the pool and walk 3-4 days of the week.
     
    I got William up at 5AM. We started out and then I saw a lightening strike. I asked William if he saw it. He didn't. So, I kept driving. Well, we saw more lightening. This means that the pool will not be open. I drove home and let William go back to bed. I had a torn retina and often see flashes of light. I couldn't be sure that is was a lightening strike or one of my flashed of light. Crazy!
     
    After, physical therapy, we went to lunch. I suggested the rib tickler. Lo and behold, it had closed. Lack of business!! We went to the restaurant next door. William ordered chicken and dumplings and I ordered a rib-eye steak. I told him that it was good that we ordered different things. William loved my order. He kept looking at it and picking at it. I finally, relented and said, "Let's switch". I had the chicken and dumplings and he had my steak. He agreed that I ordered the better meal.
     
    I was reminded that I had a conference call at 1PM. I had forgot. This means that I have to have it in the restaurant. Well, right before it starts, William says that he needs to use the restroom. So, off to the bathroom we go. I ask him to drink his coke and let me take the call. It is a long call. He wants to go home. I finally, hold the phone to my ear and push William to the car. I get him into the car but I click the phone off. I cannot do this and a conference call. William let me listen for 35 minutes.
     
    I asked William where he wanted to go this weekend. he suggested College Station. We will see.
     
    Ruth
  10. ruthpill

    Stephen's minister

    By ruthpill,

    I will be getting a Stephen's minister and so will William. I was describing my life to the counselor and she could not believe that i do so much. She said that with my schedule the minister would have to get in touch with me at 1AM in the morning. I told her that that is about the case.
     
    I shared with her about William's stroke journey. She said that i did not talk much about myself. I am so focused on William's therapy and recovery that i do not focus on myself. She said that it was amazing that I am so energetic and happy. God has blessed me with the energy and knowledge to take care of William. I am in the health care profession and therefore all ready have a tendency toward caregiving.
     
    I know that I ask very little for myself. This is a good thing now that william needs so much.
     
    If I were to talk about my feelings, I would say that I am angry at only one person. William's sister gives us lip service about how grateful she is that I am there for William. She knows that it is hard but is not suggesting that she come and help us. I really do not expect her to help. But, i also do not want to get on the phone and appease her guilt for not coming and helping. william wants me to talk to her but, I have so many things to do. I really don't want to use what valuable time I do have and spend it making her feel good.
     
    My son is very busy in his residency in New York city, He doen't have the time to help us. William's son is busy traveling for work. he doesn't have time to help us. William's mom and dad are deceased. He only has the one sister. My family disowned me years ago. I only have my son.
     
    She was amazed that I am so happy and energetic. I guess that it takes very little to make me happy.
     
    I suggested that we both get Stephen ministers and we could go out for lunch after church. William and his minister and me and mine. She will work this out. This may be a very good thing for both of us.
    Ruth
  11. ruthpill
    William is back in physical therapy. The therapist is using the lema strap on this left leg. It is helping with the dorsiflexion, knee extension, hip hiking and external rotation. it seems to give him alot more control of where his left foot lands. The therapist is using the lite gait to give him the security that he will not fall down. He is asked to stand on a step with his right leg. this puts more pressure on the weak left leg. She is also using e-stem on the thigh muscle. this is in conjunction with moving the leg. eg. Wm is supposed to lift the leg from the floor to the bed (mat).
    he also got fitted for a dynasplint on Friday. This is a dynamic splint that is designed to stretch his hand. he is very tired today. I have put it on him while he is sleeping. It does not seem to bother him and holds his hand in a nice stretch. The nice thing about this splint is that when tone kicks in from yawning or stretching the splint will react to the tone and then later have a spring that pushes the hand out again.
    It is amazing that physical therapy keeps coming up with new ideas as William progresses.
    William does not know it yet. But, I will be waking him up to go to work with me. I seem to be having issues at work. I just hope that he is patient while I get a little work done.
    Ruth
  12. ruthpill
    Another travel day for us. We head our eary for Austin. this is a 2-1/2 hour trip. Au'sg. 13. 2010. I tried blogging earler but accidently erased everything. We stopped half way to Austin. A nice little place that had pastries and kolaches. I bought Wm and myself a Kolache and we shared a chocolate milk. Just what we needed at that time of day. I had remembered to bring Wm's meds with me so that he could On the way. I just did it again. I hit a key and erased all that I had writeen.
    WE make it to the Bob Bullock museum. This is a Texas history museum. We have a whirlwind tour. We need to come back. There are lots of little videos that we did not get to see.
    We stop at Ryan's for lunch. I did not sit with the group in the room set aside for us. Those rooms are usually very wheelchair friendly.
    On to the LBJ. This is the only free presidential library. Another whirlwind tour. We need to make it back to Austin. I think that is seems like whirlwind because I need to go a slower pace with the wheelchair and cannot just zip thru by myself.
    We are on the way home. The ac on the bus is acting up and we are sweating. We finally stop at the same place and rest for 30 min. The busdriver is hoping that the ac system will thaw out. It is working a little better on the way home. But, we are so glad to be home. William's bottom is getting sore from constant sitting.
    I convince William that we can walk in the pool when we reach the YMCA. I change him and get him to the pool. Bad news the pool closes in 3 minutes!!! i did not know that. So, I take William home and give hime a shower. he is exhausted!
    He loves the day trips. I told him that we are not going to sign up for the Woodville trip. We have spent too many weekends in Woodville at Squaredancing weekends.
    William did sign us for the Galveston trip in Sept. I couldn't do that because I had a meeting. William and his caretaker went and signed up. William really wanted to go. I know because other he would have given me the excuse that he couldn't do it.
    We had good news at the cardiologist. Wm's ejection fraction has improved from 28% to 50%. 55% is normal. This means that the heart is pumping stronger. This is due to the coreg. Wm takes 25mg twice a day. I am amazed that his heart had improved so much.
    We started Physical therapy again. The Pt is using the lite gait, e-stem, and the lema strap on William. She wants me to really work with William to increase the strength of his left leg.
    William is actually able to move his own left leg and walk with assistance. We are making progress it is just slow.
    The lema strap is interesting it help the hip joint move and helps the knee to extend. I do suggest that you check it out on the web.
    The rehab doc also ordered a dynasplit for Wm's left hand. This is a dynamic splint that helps to open up the hand. I am supposed to use it for an hour day and increase by an hour a day until we get to 6-7 hours a day.
    This morning , Sat. We made it to the YMCA and did an hours worth of work in the pool. I put the weight on William's left leg to make him work a little harder. At the end of an hour, he sat at the edge and kept kicking his legs while I swam. Since, he was doing such a good job,,,,I just took the time and swam and swam.
    I told him that i had to gas the car up on the way home. I stopped at subway and tried the breakfast sandwich. I had the egg white sandwich. You can add any of the veggies to it. I added greenpepper, onions and tomatoes. They were good. I told William that we have to try things out. These are new and they are all over TV. Now, we now that they are decent.
    William had his meds and breakfast and couldn't wait for bed. he is snoozing as i type.
    Ruth
  13. ruthpill
    William managed the trip well. He was up at 6AM and we go to the YMCA at 6:30. The bus left exactly at 7AM. It is a 2-1/2 hour trip to our destination. I used the roho cushion on the bus seat. This worked!! No sore balls. At least , not unbearably sore. First stop was a rest stop for a bathroom break. Next stop Shiner Texas and the Opera house. This houses alot of Beer memorbelia and they have dinner shows also. It is a beautiful old building. We learned the history of the opera house. Next stop is a painted church. Absolutely the most gorgeous. Finally, lunch. We are starved. it is a buffet. I settle William at a table and then cut into line. I try to serve William and then go back and get something for myself. William is not very patient when he is so hungry. we get to wander the town for 45 minutes. Lots of antique stores and a couple of quilt shops. I seek out the quilt shop. I found some pieces that I just could not live without. I still need to run to the fabric shop and buy some material to go with the panels that I purchased. William can hardly contain himself. When does he get some beer. We are finally on our way to the brewery. We have 30 minutes to wait. So into the gift shop we go. This is where the sample beer is. I get William some samples. He doesn't really care for the first one that i got. it was from a black spigot. He asks me get the blonde one. This one he likes.
    Now we are on our way home. We stop at McDonalds for a bathroom break. Wm and I share an icre cream cone. We reach Houston around 6P. It was along day. William hardly slept at all. We get home and I tell him that he needs to take a shower. It will relax him. He is not pleased but complies with my wishes. He watches a little TV and then decides to go to sleep.
    Friday, he ran around with me. He did not want to wake up and go the pool. I went by myself. When I came back, I gave him the option of going to the doctor with me. I just needed a visit to get refills on my Enbrel. William wanted to come. I told him that we could eat at his favorite restaurant on the way home. The Japanese steak house. They cook the food and make a production of cooking the food. William likes the food and the show.
    He loved the lunch and gets to the spend the rest of the recuperating from his trip on Thurs.
    Saturday I woke him up at 6:30A to go the pool. He did it. We walked for 40 min. William came home exhausted. He is still sleeping. When he wakes up I will give him brunch.
    He is looking forward to our trip this Friday to Austin. I told him that we need to search the web about the bOB bULLOK musuem.
    Ruth
  14. ruthpill
    We have an outing tomorrow. Shiner Texas with the YMCA. This is where they make Shiner beer. Not being a beer drinker, I know very little about the city. But, This is one of my methods of. getting William out and about. He loves to be out and going. It is just difficult for me. I need to transfer him alot on trips. Finding bathrooms is not alot of fun. We have a long line of people to wait through to get to use the restroom. A busful of people. The day is long. 7A to 5:30P. William always complains that his balls are hurting him by the end of the trip. I had never thought about it before. But, guys can sit on their balls when sitting down. I can just imagine that that can be painful. I have told william to remind me and maybe I can try to adjust his privates so that they are not being squished under him. Once the bus starts it is too hard to get up and move around. Lets hope that I remember that for tomorrow. i will try to bring the roho cushion for him to sit on. I just hope that he is able to control his bowels. He usually does not have a problem. But, I am always concerned. I bring an an extra change of clothes.
    This Friday I have my own doctor's appointment. I had to switch work days because of the thursday outing.
    I start PT again on Tuesday for William. Pest control on Monday. Cardiologist on Thursday, Another trip on Friday. All day to Austin the Bob Bullock musuem.
    next week PT on Tues and thurs. mixed in with the water that i do with william. I set up an audiologist appointment. William had hearing aids before his stroke and cannot remember how to use them. He will be re-evaluated.
    Women who do too much. I was thinking about that. I fit into that category. I was up at 6PM and took William to the pool. I had him in the water for an hour then had a shower and shave and a cup of coffee. I paid for the trip at the YMCA and then we came home. I got William's meds together and made mysielf a tuna sandwich. I had to water the yard and make 4 phone calls for appointments.
    This is my downtime. I need to get ready for work. We have a new computer system at work and it is driving us crazy. Just another adjustment. William was complaining about my job. I had to attend a meeting after work yesterday and therefore got home late. I had to stop by work on my way home from the meeting to set things up for today. This just frustrated William. He was hungry and wanted me at home. It is hard to divide yourself up. Everybody is asking for my time and services.
     
    I get the day off tomorrow and it will be a nice trip. I told William to get alot of rest today so that he can be up all day tomorrow for the trip.
    Ruth
  15. ruthpill
    Saturday. we got picked up right on time. We arrived at our appointment 2 hours early. We had a long day. After therapy, We waited for our pick-up. I saw the bus go right by us. I called dispatch and said that she missed us. They told me that we were a no show. I told her that we had been waiting for 35 minutes.
     
    They had to reschedule. Finally at 4:30PM. 2 hours late we were picked up. The driver told me that he has never picked anybody up at this location. Anyway for a 1-1/2 hours therapy session. We had an 8 hour day. We got picked up at 10AM and brought home at 6PM. William and I were both exhausted.
    Monday, I call at 8AM to make the appointment for Tues. and I want to change the time for Monday.
     
    Wm is supposed to be picked up at 10:30AM. They tell me that they cannot push it back an hour. So ...ok 10:30AM....
    I have the caretaker start calling at 10AM to confirm the time. They change it to 11:30AM. at 11:30 they tell me that it will not be 12:30PM. I tell them the appointment is at 1PM. There is no way that he will make it. It takes an hour to get there.
     
    I call up the therapist and she says, see if you can get him here by 2:30PM. I call metro back and they cannot promise mete anything. I finally concede and say cancel the ride. I call the therapist and say that we will try tomorrow.
     
    Now, I know that when I call at 8AM. I need to ask if a driver has been assigned for the morning pickup.
     
    We will try again tomorrow. This is not a great system. It is better when I drive. But, this is a state subsidized service. I presume that you cannot expect too much.
     
    Ruth
  16. ruthpill

    Metrolift

    By ruthpill,

    Metrolift is Houston's aid to the handicapped. This is a bus system that will pick William up with an attendent and transpoft him to where he would like to go. I am trying it out today.
    I had to call yesterday to reserve the ride for today.
     
    I had to apply. This took about 6 weeks. Then we had to go in for an interview. We passed the interview and had a card mailed to us. This took about 10=14 days.
    I went and bought tickets to use the bus after I got the card.
     
    I wanted to test the system today. I called to reserve a ride for Sat. They told me that the account was inactivated. I have to call customer service. I hung up and called customer service. They found the problem, a box had not been checked on their side. The attendant was nice and booked by trip.
     
    I talked to the caregiver agency and she told me that we have to confirm the trip before we go. I called this morning and confirmed the trip. they will pick us up at 10:18Am to arrive downtown for a 1PM appt. I had to make the appt time an hour earlier. We will probably have time to eat lunch before the session. The pick up time was 2:33PM. I had to change that. We get finished at 2:30P I don't think that I can make the pick-up so very quickly. I pushed back the pickup to 3PM. that means 2:45P to 3:15P. This will be along day.
     
    I got William up and showered and almost dressed. He is sleeping in the recliner. I still need to finish the oat meal. Oh, no! It is on the stove. I have a habit of burning food. I get iinvolved with other stuff and then smell it. Luckily mention of breakfast made me remember. I got it off the stove before we had burnt oatmeal. I hate burnt oatmeal.
     
    I shall let you know how the day turns out. WE are expecting rain this afternoon.
     
    Ruth
     
  17. ruthpill
    I am so frustrated. William has been up since 2AM . He is concerned about the pool. We will get up at 5:30A. But, since he is up so early ...we can have an even earlier start. But, we need to discuss the pros and cons of therapy. Let me tell you at 4AM I am not in the best of moods. I go on for 30 min. Mind you, we started this discussion at 2 AM. I finally, threaten him. We go or I quit. We do go and William after we are finished agrees that it was good to go and exercise.
     
    But, why do I have to berate and argue and pester him so.??? I have told him that if he tells me no. I am no longer going to pester him. A no is a no. The caretakers take the easy way out. I will follow suit and take the easy way out.
     
    I have told William that if he doesn't want to get stronger then he can just rest in bed and on the recliner. I am not going to keep kicking myself to get him to do anything.
     
    I told him that if he wants to work himself into a nursing home that is his choice.
     
    I am so tired of doing everything for him. I do not want to keep being the mean person. I am the one that insists that things get done.
     
    Ruth
  18. ruthpill

    Hurricane Alex

    By ruthpill,

    Hurricane Alex is coming this way. I told William that this morning at 5AM. "Lets go to the pool before the storm hits." William woke from a sound sleep and went to the pool with me. We were the first ones in the pool. it was as smooth as glass.
     
    William wanted to get out of the pool in 10 minutes. I persuaded him that we needed to stay 30 min. 6:30AM. Now, that William get use the instead of the chair lift...he heads for the walkway. I tried to explaine that with the hurricane we needed to try use the pool today. It may be too stormy tomorrow and Friday.
     
    The other members that notice William say that he is doing better. Stamina is a hard thing to build up. He is wiped out and sleeping in bed.
     
    I am going to the store. I forgot to buy bacon. I need to get some metrolift tickets. I finally got the authorization for Wm to use metro lift. I just need to learn how this trip/ride assist works.
     
    We had a friend call and inform us that we can go on some trips with an assisted living place that she works at. This is one more trip that Wm can take.
     
    I need to log off now and try to learn about metro lift.
     
    I signed Wm up for 211 the emergency evacuation for handicapped people. Hopefully, we will not every need that.
     
    Ruth
  19. ruthpill
    Today we had the last assessment for the Lokomat clinical study. William did well.
    This brings us to the point that we can now start more PT and OT.
    It was good to see the progress that William has made.
    Before the study started, our initial assessment was made by William trying to walk using the quad cane. The therapist was seated on a stool and manually lifted his left leg.
     
    The assessment at the end of therapy. William was able to walk with moderate help. The therapist didn't have to sit on a stool and help. She just had to push the foot manually.
     
    The assessment 3 months after therapy has stopped. Today, William was able to walk with the quad cane. He moved his left leg himsel. The therapist just help him shift weight.
     
    It is amazing to see how much has happened in 6 months.
     
    My conclusion is that the lokomat really did miraculous things for William.
     
    The lokomat helped William to strengthen his legs and gain stamina. He was encouraged to walk as much as possible. He really took that to heart and managed to do that. The lokomat did encourage the proper gait.
     
    Today I asked the therapist how she was shifting his weight. This helped him to move his own left leg. The answer was that you hold him at the waist near his right. You can sort of manuever him by a simple nudge.
    I will start trying this.
     
    We rushed to the YMCA afterwards. They had their monthly luncheon and had a program on the American Flag. We made it!!. Late, but we heard the program ..It was excellent.
     
    We were going to swim, but lightning closed the pool. We just came home.
     
    I realized that i had lost my credit card. I went to the bank and cancelled that account. I was going to use my debit card. I was at the store and I could not remember my pin #. I went back to the bank and had to reset the PIN. What a day. I just wanted to go home. We had started out at 9:30A and finally got home at 4PM.
     
    We are progressing. It is just hard to see except when you look back.
  20. ruthpill
    Fred,
    I use styles, (georgia) I clicked once and a drop down appeared.
    I used size 5. this is large.
    this is size 3 This is arial black. Century gothic. texst color. purple.
    Maybe you computer is not totally fixed yet.
    i tried to spell check . It said to download ,,but that did not work for me.
    Ruth
  21. ruthpill
    I started throwing too much stuff away. I wanted to declutter.
    I ordered some book on Amazon for William and I used the visa gift card that we had been given. I placed the order and got the response that it was accepted and the order would be sent. This was 4 days ago. Today, i open up my e-mail to read that the card was denied. My problem, is that I threw the card out. I had it sitting around for a couple of days and then I tossed it out. the trash was just picked up this AM. I hate those gift cards. Next, time I will not throw it out until I get the product in my hands. I had called the company that gave us the card buy they do not know which bank gave it to them. Next time i need to take a picture of it and leave it on my phone. They only had the last 4 digits on the card. Easy come..easy go.
     
    This was after an early morning swim . William will not try to swim again. It was a fluke the first time. He was tired and cranky. He did enjoy the after coffee visit with the other members of the YMCA. We came home and I put him to bed. He has a friend that will come and bring him to lunch. I gassed up the car and truck. I want to be ready for hurricane season. I like to keep the vehicles topped up with gas. You have to be prepared.
     
    WHen William is off at lunch I will go and swim some laps.
     
    I work this weekend and I hope that everything goes well with the caregivers. WE have a new one for Sat.
     
    William went to bed consfused and woke up confused. But, after the swim and coffee he was no longer confused.
    Strange how that happens.
  22. ruthpill
    William stroked on 12-13-08. This will be a date that is etched on my brain. it is like my birthday.
     
    He was reading Ezekial preparing for Sunday school. He was reading out loud. He stopped reading. I looked over and he appeared to have nodded off. This is odd. I went over and checked...his breathing is labored. I asked him to standup. I told him that we need to go to the hospital now. He said" give me a minute". He couldn't do it. I called 911 and said "I think that my husband just had a stroke". It felt like an eternity for the ambulance to get to the house and for us to get to the hospital.
     
    I am on the phone with my son (a resident MD in NYC). He is advising me to get TPA if William is eligible (ischemic stroke vs hemorahgic). He is calling one of his friends who advises on the merci retrival. We get to the hospital and I realize that this is not where I want to be. But, he has arrived and they will not transfer him now.
     
    Later, while the TPA is dripping, he is transferred downtown to the medical center.
     
    It is planned that he will be put on a regular floor. By the time we reach the floor of the hospital...the EMT notices that William is not stable. He is rushed to NICU (neuro ICU). He stays in ICU for 3 days or so. That part is a blur.
     
    We get to a regular floor and are told that the 1st days are critical. He is monitored closely. I am told that he needs to have a sitter with him at all time. They hire a CNA to be with him while I am at work. They have put in an IV and nose tube for feedings. William inadvertantly pulls the nose tube out and has his hands tied down to the bed. They do not want that tube to be touched. I release the bonds while i am in the room with him. The nurses do not like that. I also have the nurses turn him every 2 hours. This is a chore. While I am there, I help. because it takes two people to turn him. William at this point doesn't open his eyes and move at all. The doctors come in and want to check his eyes. They have to hold his eyelids open. He cannot do much of anything.
     
    PT comes and wants to get him up. Well, he can hardly move. They bring in what is called the cadillac chair. they put him in this contraption and tie him in. He cannot hold up is head. it is as if the muscle in his neck do not function. His chin is on his chest. I hold his head up. He still does not like to keep his eyes open.
     
    We get moved to a different building. He stays here for awhile. We are told that he is not strong enough to go the rehab unit. William has been diagnosed with congestive heart failure and an arrythmia. His ejection fraction is very small. It has since improved with medication. We are transferred to SNF (Skilled nursing) for 2 weeks. Finally SNF kicks us out and we are allowed to temorarily try the rehab floor . This is on a conditional basis. Let's see if william is strong enough to endure therapy. PT on the SNF is once a day. They come in and teach him seated balance. This is just sitting on the edge of the bed. Can you imagine? This is difficult. It takes a couple of therapists (Andrew and Warren) to hold him upright at the edge of the bed. William can still remember seated balance (what a term). Still no food, on the nose feeding. The tube is accidently pulled out again. This time I plead that they keep it out. William gets to start eating pureed food and thick liquids. We move from super thick to moderately thick to chopped. We don't get to regular food until we have been home. He passes the swallow test
    a month so after he gets home. I get rid of the thickener...I hate it as much as William. Thick water did not taste good.
     
     
    Hard and difficult and scary...but worth it. No more nurses and doctors barging in all of the time. No more mashed potatoes and gravy. The chopped diet was getting boring.
     
    I start with home therapy. That lasts 1 week. I change to regular outpatient therapy. I feel that he needs more help and I can get him to an outpatient facility. Unfortunately, I choose one that does not specialize in strokes. They don't tell me this until I change because of the poor therapy that he is receiving. They do not realize that a brain injury is treated differently from a broken leg.
     
    We get home in February. I finally find a good stroke rehad place.
    In May, I start his water therapy. I am the water instructor for William. At the beginning he can only stand at the edge of the pool. We have a chair lift that drops him into the water and gets him out.
    He is afraid of the water.
    We try accupuncture for 3-4 months. This does not help. William hates needles.
    The only outings that we have are to the doctor, Therapy and church. Church has been our regular weekly outing from the beginning.
     
    We use OT and PT until the year is used up. I find a clinical study (lokomat). This a robotic treadmill. this is an amazing study. It gets William into wanting to walk. Perhaps he is finally strong enough to really participate in rehab.
     
    I get William fitted for a custom wheelchair. It is still being authorized. But, unfortunately, my insurance has changed.
     
    William after 13 months of water therapy with me...is able to put his head under water and is able to actually try to swim.
     
    We go on bus trips (day trips) with the YMCA. William has the stamina to go for an 8 hour outing.
     
    We no longer use the wheelchair in the house. William is able to walk with assistance. I move his left leg and give him a little support. I switch and he use the hemi-walker, quad cane, walking stick, single point cane. William never knows what is going be passed to him.
     
    William is able to use the urinal , while he is in bed. This means that I do not have to get up 3 times a night.
     
    Things are looking up. William is able to follow TV programs. He loves the civil war. I can put on a civil war program and William is engrossed for hours. He has no problem with concentration or understanding. We had problems with TV at the beginning. William was just confused. HE could not watch TV for any period of time. He could not read and concentrate. Today, he is able to read and concentrate. Yes, he is improving. But, it has been along journey.
    My goal is to get him to walk without assistance. I am getting there in the water. I just hold his hand. He does not use a belt. At the beginning, I supported him, totally in the water. Yes in looking back we have come along way.
    The change is so insidious. I spend so much time with William that I don't notice changes. This black and white chronology is good for me.
  23. ruthpill

    swimming!!!!

    By ruthpill,

    Today was amazing!! I am walking William in the pool. It is 5AM in the morning. All of a sudden William is swimming!! Didn't even bother letting me know what he is going to do. What a shock. He has just started putting his face and head in the water. Now he is swimming with his right arm and kicking his legs.
     
    He reminded me that I needed to take the weights and water shoes off. I had not even thought of this. He kept swimming with his right arm and his legs. I tried to work the left arm. We even took the floaty belt off. William is getting brave in the water.
     
    He even wanted to walk out of the pool using the steps. I told him that I am not quite ready for that yet. He feels that he is. We went up a couple of steps and then I had him walk down.
     
    Of course, he wanted to get up at 2AM. I had to beg him to stay in bed until 5AM.
     
    We get to the pool and it is dark. Now, William is confused he thinks that it is the evening. When we finally get finished he can tell that it is the morning.
     
    We even went next door and visited our neighbor. William had to walk up some steps but he managed.
     
    He was even engrossed in a sports magazine. I put on a yoga tape during breakfast and he wants to get back into yoga. I told him that I have some beginning exercises to start.
     
    Today is strange. William usually sits in hi recliner but today he asked to go to the couch to lie down. This is different. At 2 am he wanted to get up and eat. But I said try to hold off. I don't want to fix anything. I finally gave in and gave him a cereal bar and some yogurt.
     
     
     
     
  24. ruthpill
    I had just listened to a program on diet. This has prompted me into a better diet again. I fiexed peanut butter toast, oaktmeal with strawberries, apricots and pineapple and OJ. I told William that the the peanut butter toast was like bacon and eggs. He loved the fruit.
     
    We made it to the therapeutic pool today. We had a nice long hour in the water. William is so much better in warm water. He was willing to stay for an hour. We did the warm exercises and walking and leg exercises and planks.
     
    We came home and I made the healthy breakfast.
     
    I have turned on the TV and put on netflex. William is engrossed in a militray documentary. He loves histroy. i am not a fan of that type of program. But, you cannot tear William away from the program.
     
    I told William that I have noticed that he has more energy and is able to stay up for longer periods of time. His cognitive procesesses are improving.
     
    He is eating neater and does not need as much help. All in all we are getting better.
     
    He keeps wanting to go on a vacation. I told him that i imagine that it might tiake a year. It is just too much work for me. he agreed.
     
    He is able to use the urinal at night. Yes, things are looking up.
     
     
     
    Ruth
     
     
  25. ruthpill
    Well another first. William put his face in the water and blew bubbles. I don't know why he has not done this before. But, Yes, this was a first. He was watching this boy dive in the water to pick up hoops and said that he could do that. He hasn't done that yet. But, this is a start.
     
    I have started taking William to a different YMCA. This has a therapeutic pool. It is always warm. William is so much better. He never suggests that we leave. I am the one that has to make the suggestion. He will stay in for an hour and longer. Today was another first. They had a deep water class. We watched and William decided that he wanted to try some of the activites. They were different. he did very well.
     
    We went to metrolift downtown. He is now able to use the metrolift system. They have curb to curb pickup. I just have to call and arrange a pickup. i will see how that works. You do have to wait alot. Somebody called it metro wait. We just had a little interview and they will send us a card.
     
    I got myself a smart phone. I ran over my phone the other day. It fell out of my purse and I didn't notice. I was just going to get a cheap talk phone. But, my son convinced me to join the 21st century. Now, I just have to figure out how to use the phone. i can barely answer or make calls. This will take me alot of work. I told William that we can learn together. It is a good thing that we have the easy to use phone and the new phone.
     
    The phone is a droid. I have internet on it and everything. The handbooks are not as detailed as the old handbooks.
     
    After the metro appointment..I used the GPS and made it to the new YMCA. We remembered that they were having their potluck today. I gave William the choice of the potluck or a restaurant. He was starved. No breakfast this AM. William loves people and said lets join the potluck.
     
    We went and found the gym and asked if we could join them. They were so gracious. They said yes. Well, we were 45 min early so I went off and bought some food to share. William stayed and visited. He want to go back and visit with the vets. They meet every month.
     
    William wants to get back into the social world.
     
    We have a square dance potluck social this Monday. I am not working so we will go and visit.
     
    William says that he needs to start working on the arm. This is good.
     
    Ruth