ruthpill

Stroke Caregiver - female
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  1. ruthpill

    A new day...Thursday.

    By ruthpill,

    Great day today. I have the day off. Got to the pool by 6:40AM. A little late for us. We are the early morning group. William did not want to go to the pool this morning. He just did not want to part with his nice comfortable bed. But, after grumbling and trying to talk his way out of it....we are on our way. We did 30 minutes of walking. William was able to walk with just the flotation belt. No noodle under his arms. I noticed that he would take his hand off the side of the pool and maintain balance in the pool. Things are improving. Just slowly...Had a great shower and a little cup of coffee at the YMCA. Home for breakfast and meds. William had oatmeal, yogurt and some peanut butter and marmalde toast. That was a big breakfast for William.
    He had a great day yesterday. Sharon took him out for lunch. I had to go to work early. A caretaker was at the house at 1PM to be with William. I had a 1:40PM appt. for lab work. William somehow had her go to the wrong buiding. SHe calls and said that they can only go to the second floor. But, they need the 5th floor for labs. Anyway, they finally found the lab on the fifth floor. I think that I will take William back today...I will find out where they went. I can't figure out if they went to a different building or found a different elevator in the correct building.
    We had to wait for the shower again ....Everybody loves the handicap shower. It is larger...This lady could use the other showers but says that she likes the handheld shower in this bathroom. I had left my bag of stuff in that room. She took it out and was about to bring it to lost and found. Now, why would a person bring a bag of stuff to lost and found? I am glad that she didn't do that...I would never have thought to look in lost and found. It was suggested that next time I just close the door with my bag inside.
    Well, I hope to use e-stem alot today. i made lentil soup and potatoe soup yesterday. I am set for the day. The lentil recipe is supposed to be mixed with spinach. I can hardly wait to try it.
  2. ruthpill
    I was so tired of being at the hospital. That I didn't care about fighting for more rehab time there. All I could think about was. No more 5:30AM blood draws and meds before shift change. No more waiting for the PT and OT and ST to show up. I don't care how hard it is going to be. I want to take William home. I had spend every minute that I was not at work at the hospital. That meant, I would leave work at 10 and get to the hospital with the 11PM shift. I would stay until 1Pm and get to work for 2 or 3PM. I spent every weekend there. That was our home. The cafeteria was my kitchen.
    Finally, discharge day. Everybody, ST, MD, PT, OT, stops by and says goodbye. ST gives me lots of handouts, the nurses of course give handouts, the PT and OT do not give me handouts. ANyway, I went t the various medical depts and requested medical records and all pictures on CDS. The medical records were expensive. $65.00. Later I find out that this is for 10 pages. I get it after a few phone calls months later. What I receive in the mail is a joke. 3 pages of somebody's else's history and some pages that only have william and my name on it as guarantor. What a joke? The cardiologist gave me most of what he did not want. That was nice. So I got a copy of William's medical records. I haven't read it. Afterall, I was there.
    We get home and I find that the wheelchair and hospital bed have been delivered. I was not at home. A friend received it for me. I have homehealth set up. This means a shower twice a week and nurses to come take finger sticks for INR. OT,PT<ST will come and evaluate. I do this for a week.
    One evaluation and one treatment. I happen to know the PT person. She used to work for my podiatrist. She and I agree that outpatient is much better. She says that is she could get her husband to outpatient PT she would do that. Well, I can do that. I call up the hospital and set up outpatient. Next week evaluations are done for methodist hospital. I now do not have shower assistance or blood draws. This means even more outings for us. We go to therapy 3 days of the week and have blood draws once a week.
    The shower thing is scary. It is probably dangerous,too. My son keeps reminding me to be very careful. He is in Chicago and tells me this over the phone. William is on coumadin and should not fall. He can bleed. Well, we manage somehow.
    I had reduced hours at work, This meant that I was not working my weekends. (every other) . Now I am back up to full time. I have caretakers come in stay with william while I am at work. He doesn't like their cooking. They don't like to work with him regarding exercises. It takes time to get the right team of caretakers established. But, it is constantly changing. I thought about hiring on my own. But, what about a now show? I decide to use an angency. I will pay them extra. They take care of the no shows and sick calls and whatever else can happen.
    WE get into a routine. I decide to throw in accupuncture. I have had too many people say to try it. So, another appointment to our mess. We are always on the go. Accupuncture last of 2 months. It does not seem to do much for William and he hates needles.
    I have started hydrotherapy. I take William to the YMCA to walk. They have a chair lift. I can get him in the water. We start walking on the edge of the pool. 15-20 minutes a session. I discover their shower. It is easier to give William a shower there . My new shower! Now, I have a fight on my hands. Regular YMCA folks like that shower. It is private and big. I have to complain to management that we need a handicap sign on the door. WEll, it takes months of e-mails and talks with the director to get that done. Still, they have a temporary sign up. I still need to remind them that they were ordering a permanent handicap sign for that bathroom. The sign helps. I have not had to wait so long or often to use that shower.
    more to come next time.
    addendum: Yesterday I tried the bike and hand pedal at the YMCA. I made some straps and used lots of velcro on them. I managed to strap the left arm and left leg onto the respective machines. William did 5 minutes on each. I told him that we would work up to 30 minutes eventually.
    Stroke is alot of work.
  3. ruthpill

    Hand splint + OT

    By ruthpill,

    The newest hand splint is not working well. The hand manages to slide out and bend at the knuckles. I will have to ask them to work on that.
    William had a great day today. Up at 5AM ..we made it to the pool by 5:30AM. WE did walking for 30 min. I keep stressing that we need to increase endurance and stamina. HOme by 7AM. He has his meds and yogurt for breakfast. Back to bed for William. I tell him that he can rest until 9AM. Friends are coming over to stay with him and give me some respite. They are going to play bridge. William is a little apprehensive about this. He hasn't played since his stroke. I leave him. When I get home. He has thoroughly enjoyed himself and finds that he can still play. I try to make him some lunch. But,, he does not the salad that I made. S0, he has a piece of pie for lunch. Back to nap for him. HE is tired. I get him up when the caretaker comes at 2PM. I am off to work. The caregivers stretch and massage him hand for me.
    I read the latest OT report. They plan on working with him one more month. But, if no progress is made then they will discharge him. I told him that we need to concentrate on the hand this weekend. I will try e-stem and pressure.
  4. ruthpill
    I am thinking of increasing William's independence. I will try to cut down on caretaker hours. An hour at the beginning and end of the day. I think that it is time to try some independence. William told me that he thinks that the caregivers have primarily given him company. This has helped with his state of mind. They are company. But, they do not do alot while they are here and they are a hughe drain on the budget. I cannot wait to have them gone ...but, I know that we still need them for awhile more.
    WE had a gread walk in the pool today. THe lap lanes were really busy today. When we first started, WIlliam complained of pain in the left leg. Just above the knee and quad. After 15 min. of walking the pain disappeared. It seems that it needed a little stretching and walking.. That was good! I was a little concerned at first. Because, William does not complain about pain.
    Yesterday, it was raining and lightening and thunder. WE had to skip the pool. We used the arm pedal and the recumbant bike. Five minuets on each. My straps worked well.
    Today, William had his pills with yogurt and grapes for breakfast.
     
  5. ruthpill

    Time flies

    By ruthpill,

    The first of August. I cannot believe that time flies. It just doesn't stop. I went to work today. THerefore William did not get alot of work down. It was a down day. He got to relax. He seems very confused sometimes. I don't know why that is. Somedays are just not as good as others.
    More later. He has been getting better at playing mah jong on the computer.
     
  6. ruthpill

    2 weeks on Rehab

    By ruthpill,

    The 2 weeks on rehab is rather scary. Why only two weeks? Well, we will make the best of it. I have William dressed and ready to go each morning. I was told that they have to be dressed and ready for therapy. Now, I learn that part of therapy is learning how to get dressed. WEll, we skipped that part. WE wait for the PT person to come to the room and take us to the 4th floor for therapy. They try to get William up. IT is difficult. He does not have much balance or strength. BEing on the Skilled nursing unit for 4 weeks does not give you alot of strength. But, he tries. The speech follows. We go back up to the 9th floor. She is late or does not show up. WE are told that there is a bulletin board near the nurses station with our schedule. I go and check it. Now back downstairs for OT. Not, much happening with the arm. THis goes on for 2 weeks. Time to get ready to go home. They have a weekend outing for the caretaker to bring the survivor home. I don't know about this. I ask, How am I supposed to get William into the car? Oh, yes, they say...we had better practice a car transfer. Good Idea!. I ask what do I get to bring home. Do I get a wheelchair and potty chair? Only a wheelchair. WEll, I hope that he doesn't have to go to the bathroom. I do bring a urinal home. On, saturday, My practice run. Nobody goes with us to car. I actually bring the car to the door from the parking garage and then go and bring William down. I parked near the curb. This is dangerous. The wheelchair is on the edge. Now in practice the car is in a room. Not near the road near a curb. Anyway, nobody comes to help you. No nurse or PT. I am on my own to figure this one out.
    Luckily, my neighbor has a potty chair. We need it at home. I just stay for an hour or so. Scary. WE could go again on Sunday. But, I say no thank you. I will wait until we are discharged. WHen I go to PT again. I let them know that we need more practice on car transfers. Twice was not enough. I was not comfortable. One more week. I am getting the townhouse ready. I get a ramp put in the entrance way. I get a walk in bathroom installed and my son is clearing out the rooms...so that the wheelchair has room. WE are packrats. Too much junk in the house. Thank God, for my son. He was doing that while I was at the hospital. He also set up MD appointments for me. Now when William is out. WE will have new MD's is place.
    More to come in the next blog.
    WE had our morning walk at the pool. William did not want to get up. But, he did. He is now resting.
  7. ruthpill

    WILLIAM'S Journey

    By ruthpill,

    I have decided to learn how to blog. I want to journal William's journey. Ischemic stroke , 12-13-08.
    We were enjoying a quiet Sat. evening. William is preparing for Bible study. He is sitting on the couch reading the bible to me. I notice that he has stopped reading . It looks like he has dozed off. Now , that is odd. Then I notice this gasping for breath. I can tell something is really wrong. I go over
    to William and ask him if he can stand up. I would like to go to the car and the hospital. But, he cannot stand. I whip out the cell phone and dial 911. I say that I think that my husband just had a stroke. The ambulance arrives in a short period of time. Of course, it feels like a long time. By this time I am on the couch with William. He now needs support on his left side. But, the Emt knock on the door and don't hear me shout to come in. I get the door open and allow them to walk in. They start to assess William. They strap him to a gurney and wheel him out to the ambulance. The ambulance has my car pinned in. It seem like an insurmountable amount of time before they take off. I am waiting in my car while they do whatever in the ambulance. Finally, they head off to the hospital. He is in the ER with the MD by the time I park the car and finish the paperwork. While waiting in the car, I call my son and tell him what I think just happened. He just graduated from medical school and calls his friends who are ahead of him. He is told to make sure that we have the merci and TPA done ASAP. TIme is of the essence. Now, I start to think..this may not be the right hospital. We are in Houston, but in the suburbs. They may not have TPA and the merci procedure. So, I ask if we can be transferred to downtown Houston. I am told no. We just got here. Oh, well. I wasn't thinking about what hospital at the time of my 911 call. But, finally after 2-1/2 hours TPA is administered. They had to do some tests to make sure that he was not bleeding. Now that the TPA drip is running....he is being transferred to downtown Houston. He is stable at the time and is scheduled to go to the regular floor. But, when we arrive is not stable. He ends up going to NICU. He ends up staying there for 2 days. Stable again..Monday he is transferred to a regular floor. Still having tests done to check out the heart and brain. Now, I told by the neurologist that the next 7-10 days are critical to make sure that the more damage is not done. I thought that we were in the clear. But, no not yet!! William does not want to open his eyes. They have to be manually opened by the MDs and nurses. He has a feeding tube down his nose. He is rather out of it. But, when he realizes that the tube is down his nose. He touches it. the nurses are alarmed thinking that he is going to pull it out. They restrain his arms. Somehow, during his sleep he pulls the tube out. They just put it back in and tie him arms down even tighter. When I am with him. I untie his arms. He just doesn't understand and I can keep him hand away from the feeding tube. Of course, he has an IV in him arm. I start to notice that he is getting red spots on his back. I learn that i need to request that they turn him every 2 hours. I get lots of pillows and prop him up on his sides. The staff request that I spend the night there at the hospital to watch him. I work until 10PM ...so after work I would go to the hospital and spend the night and morning. Since, I was there I would bathe (sponge bath) and change the sheets. After lunchtime. I would go to work. This went on for 2 months.
    William is transferred to a skilled nursing floor. The MD thinks that he is not strong enough for the rehab floor. He has been diagnosed with high blood pressure, congestive heart failure and atrial fib.
    In SNIF he gets a double room. So I use the empty bed. I bathe and change the sheets and feed William. At one point, they move him to a single room saying that a couple of ladies will be needing the double room. This is better. Now, I will not have to worry about not being able to stay in the room once a roommate arrived. Finally, the nose tube gets pulled out and this time is stays out. He is finally ready to try regular..pureed food. and honey thick liquids.
    On the SNIF unit they try to work on his sitting balance. No sitting balance.!!! In the 4 weeks that we are there...he gets to walk and sit and stand. They have two strong PT people who work with him once a day. Not a lot of PT. OT was minimal. They would come and way can you move the arm. But, that was about it. HE could not. He got swelling in the right arm and leg. We called in a consult and had a doppler done. He got a urinary tract infection from the diaper. Finally we got a condom catheter put on. These are nice. But, they have to be the right size. Sometimes they would use the ones they had..either too large or too small. They would fall off quickly. I would have to ask them to order the right ones.
    We are finally transferred to the rehab floor. Just a trial basis. MD is not sure that William is strong enough to fully participate. We move in on the weekend. So free time. William does the rehab. I don't know why the MD was so worried about stamina. They only do rehab twice a day. AM and afternoon. And it is only for 40- to 60 min. They work on balance and walking.
    Today 7-17-09 , 5 months, since we came home. William walked 20-30 feet with a small based quad cane with min. assist. We are progressing.
    This has been his best PT session to date. They are astounded at his progress. I am so glad to hear the PT say this.
  9. ruthpill
    The news that Lisa lost her Ralph. I was just devastated. Lisa and Ralph, I have known for awhile. I know that this is internet. But, I feel the loss so keenly. It is strange how well you get to know people on this site.
     
    I really hate to think about death. I feel that we have come so far. We have worked so hard and then all of a sudden out of the dark comes death .
     
    Stroke survivors have challenged death and won. But, there is always the chance that it(death) will come back to collect another day.
     
    I know that every day is a gift from God. I know that I need to appreciate each day and minute. But, death makes me nervous.
  10. ruthpill
    William's complaining yesterday...won him another trip to the pool at noon. Twice in one day ....Complaining too much gets you more of the same. I am a mean task master.
     
    Actually I was going to go swimming myself at noon and asked William if he wanted to come. He said yes. I told him that this is like the movie Groundhog's day. Everything keeps repeating. William had gotten up and went to the pool. Came home and had a nap. Got up again and had another go at the pool.
     
    Today, we had a good morning at the pool. Not like last time. We stayed and had coffee and visitied.
     
    Somebody gave us a mushroom tea to try. Ganaderma lucidum. He said that it really helped him. I checked it out. It may interact a little with the coumadin. I need to do some more research before I give it to William.
     
    Today, AJ, a friend will come and take William out to lunch and give me a couple of hours of respite.
     
    This is my weekend off. What should I plan?? I am thinking of rest.
     
    Last night William calls me at work. 40 minutes before I get off. I cannot leave early. He tells me that he needs to go to the bathroom. I know that he cannot wait for an hour. Sure enough..He calls me 10 minutes before closing. It started. I tell him I will be there in 20 minutes. This is the 3rd shower of the day. I get home to a mess. i tell him that he knew. I just couldn's get there soon enough.
     
    That was a long day.
     
    Today will be so much better....I know it.
     
    Ruth
     
    Ruth
     
     
  11. ruthpill
    I was reading the heartache of caregivers. A reoccurring theme is the lack of motivation. I wonder if the stroke is responsible for this. I had read that it takes twice as much energy for a stroke surivivor to do the same thing as a person that has not suffered a stroke. it could have been 10's as much. Whatever,,,,way too much is expended to do the same thing.
     
    Yes, William , like many others was not one to sit around. He was always moving. This is due partly to ADHD (attention deficit hyperactivity).
     
    But, post-stroke it seem that he is not very motivated to do at home therapy. I do bring him to the pool 4 to 5 days of the week. today as usualy he is wiped out after walking and working out in the pool. The 30 to 40 min in the pool and the shower afterwards wipes William out. He will go home and nap for 2 hours. I will wake him up and then he goes back to sleep.
     
    I come home after 10PM and William is thirsty and hungry. He has dinner with me. But, this now means that he will be needing to pee a couple of times at night.
     
    I need to work in more therapy other than water. We go the YMCA. William mentioned today that he needs to start using some of the meachines Perhaps this Friday I will take him there in the evening and we can try some machines.
     
    If William mentions something like that. I will see that it occurrs.
     
    It depends how William feels when it is time to try some of the machines at the YMCA.
     
     
     
    Caregivers you are all so wonderful. This is very hard work. But, yes, William is making progress. It just feels so miniscule. 16 months to get to where we are today.
     
    William likes to use the hemi-walker. I have started him on the large base quad cane today. He keeps asking me about the walking stick. I have that as another goal. I told him that the stick is when his balance is better and then he will be walking more on his own.
     
     
     
    Ruth It is time to go to bed and rise up early and hit the pool with a splash.
     
     
  12. ruthpill
    We made it on another YMCA outing. The painted churches of Schulenberg, Texas. It was a great day. We go off and on the bus for every church. the Czech and German churches. They are amazing.!!! I took some wonderful pictures.
     
    We had a long day. We are both exhausted. I tried to download the pictures...I lost them all. I don't know how i erased them??
     
    I took William off the bus and pushed him into the YMCA. I was going to take him into the pool but changed my mind and just gave him a shower. I was getting tired.
     
    We both slept well. Exhaustion!!
     
    I must say that William is walking with assistance more in the house. I need to work on getting him to use the urinal by himself. That will take some work.
     
    William went to church today with the new caregiver. They went to the mall after church and William bought me a mother's day gift.
     
    I forgot to say that I bought a purse on our YMCA trip. That was supposed to be my mother's day gift. Yes, a phone call from my son.
     
    William also brought lunch over for me at work. Very thoughtful.
     
     
     
    RUth
     
     
     
     
  13. ruthpill
    We have had the new agency for 1 week. So good so far.
     
    Had a little crisis on Sunday. William was cranky. He and the caretaker called me in crisis mode at noon. Evidently William got confused and turned around in church. This caused stress and confusion. Not a good combination. Anyway he became rather short with his new caretaker. He had her in tears.
     
    Somehow things go better and they made it home. I said just William go to bed to bed and then he be better. William said that he came home and tried to stay out of conflict.
     
    I actually like the girl. But, I hope that William is able to contain himself. He tends to be too bossy and nobody likes to be treated like a 3 year old. But, this is way of having control.
     
    We had another person today. She was OK. William said that she was nicer. But, she just had him sleeping in bed all day.
     
     
     
    What am I to do??
     
     
     
    Ruth
     
     
  14. ruthpill
    We went on a bus trip with the YMCA. It was a long day. We went to Smithville, Texas the site of the Movie "Hope Floats". We had not
     
    seen the movie. But. it was interesting. They have since had 3 other films made in that little town. They do not have 5,000 residents yet.
     
    The next movie is the "everlasting Tree" starring Brad Pitt. It is amazing! They rent out the house and then rent out a block of houses
     
    around that one. They use the extra houses as wardrobe, resting, snacking, etc. The residents were compensated for leaving their homes
     
    to the movie people for six months. They had to gut the house that was used. That person got a totally remodeled house after they were
     
    finished.
     
    William managed to stay up for most of the day. He is sleeping much better at night. He hardly ever needs a sleeping pill.
     
    He is willing to walk with assistance from the house to the car. We went out tonight for icecream and he walked with assistance from his
     
    recliner to the car. He knows that walking...practicing is essential for his growth. THe main thing that the clinical study did was to
     
    emphasize the need to practice walking alot more at the house.
     
    We will be going to church tomorrow. I plan on bringing the hemi-walker so that william can stand up during service.
     
    We will also be going to an after church outing. WIlliam is looking forward and wants to go. He said that he will walk into the house.
     
    We will be going to hear the Tidelanders after church at 4PM. one of our friends sings in the mens ensemble called the Tidelanders. WE
     
    will go and see him Sunday afternoon. I told William that it will be a busy day.
     
    One of the caretakers that William had with the old agency also works for the new one. We had to tell them that we did not want that
     
    particular caretaker. She was almost assigned to William. Thank heavens that did not happen.
     
    Ruth
     
     
  15. ruthpill
    We had our assessment today. It was good. Much better than the other one. She was really on the ball. I was impressed.
     
    I will need to call and cancel my current provider tomorrow. I need to see how much notice they need. I am hoping to start Monday with the new service.
     
    The new service went over things in detail. This could be that i was more aware of what I need. The first time with William just out of the hospital. I was like a deer in the headlights. I didn't comprehend alot.
     
    I am really emphasizing what I expect and what I was displeased with from my current provider.
     
    After our assessment. I told William that Ii needed to have my haircut. So I called and had that done then I dropped something off at work. We went out to dinner after that. Luby's it was.
     
    William had his cheese enchaladas and Ii had a salad. I shared with William he loved the salad.
     
    The director, was wearing the MBP shoes. She said that it cured her sciatica and has improved her posture. I have a pair that I bought
     
    but have never worn. I have them on. You need to work into time wearing with them.
     
     
     
    I shall let you know how my phone call goes to the currect agency.
     
    Ruth
     
     
  16. ruthpill
    We went to visit with the square dance club. William was tapping to the music. He loved everybody coming up and hugging and greeting him.. He really wants to walk just to dance again.
     
    I told him in order to get there...we need to work really hard. It has taken us 16 months to get to where we are now. That is walking with
     
    assistance. He needs to work with me consistently and go to the pool as often as I can get him there. He really has motivation to get
     
    moving up and walking.
     
    I will be looking into a new care giving agency for him. I have not been pleased with the one that I am currently using. Change is difficult. I
     
    am not happy with the current one and I have looked into another one. She will come out tomorrow for an assessment. The caregivers from
     
    the current place are lazy. They do not want to do much other than sit and watch TV. I need them to interact with William more. TV is not
     
    what I expect. Now, I do veg out on the couch and watch TV when i get home. But, I am tired after working. The caregivers...this is their
     
    job. They don't exercise him or want to shower him. They leave that for me. They just babysit. I hope that the next agency is better.
     
    I shall keep you informed..
     
    Ruth
  17. ruthpill
    Finally six weeks of therapy are done. This is a day to be excited. We celebrated by eating at Sweet Tomatoe. I decided that people love to celebrate by going out to eat.
     
    The assessment was done by a physical therapist. She found that William was able to move his foot and could do much more by himself. But, you have to remember that we also got the AFO back today. We had adjustments done. The adjustments help.
     
    William was grouchy with the PT. He didn't like her telling him what to do. It was not pleasant. It was one of those days. The assessment was finished. after 2 hours. William is insistent that he doesn't like PT.
     
    The assessment was difficult because she wanted William to walk as fast as he could. He can't walk fast. He still needs assistance. but he needs help with the upper part of his body vs lots of help with the lower part of this body.
     
    Of course, you cannot mention that you were in the lokomat study to her.
     
    William and I decided that The lokomat was a blessing. I do not think that William would have tolerated the constant cajoling of the PT for hours on end.
     
    But, it is time for a break. 6 weeks of daily therapy was rough.
     
    Tomorrow we will be back in the pool. Tonight we will try playing bridge with some friends.
     
    I'll miss the caretaker gettogether tonight.
     
    Ruth
  18. ruthpill
    William was tired at church. This is a first. he has never been tired at church. This is the result of getting up every 1-1/2 last night. I don't know why he had to pee every 1-1/2 all night long. We have nights like that every so often. This means that neither one of us got much rest.
     
    At the beginning of service, William lets me know that he now need to go to the restroom. I ask if he has to go now. He says no. But, I know better. WE need to go now. So, I quitely take us out of service. WE sit right up front. Anyway, I make it to the restroom and we manage fine. I tried to explain to William that when this happens and he is with a caretaker he needs to tell the caretaker to take him immeidately. It takes awhile to get to the restroom and then get positioned into the little stall. Everything take more time if you are in a wheelchair. I told him that it was lucky that we did not wait until the service was over. Then the pathways are clogged with people visiting and using the restroom. We would never have made it in time. It is best to use the restroom while every body is busy in service.
     
     
     
    We went to Sunday school next. But, William kept nodding off.
     
    On the way home. he told me that he could not go to the pool immediately. I told him that we would take the day off. It is very gray outside today. Right now, william is sleeping. i came home and gave him lunch, pizza and lemondae.
     
     
     
    We played bridge last night. William did so well. He did much better than I did.
     
     
     
    I found someplace for William to walk at the YMCA. Outside one of the buildings there are rails along part of the sidewalk. this acts like parrallel bars. I had William walk up the slope using the rail and walk back using the rail on the other side. It was funny. I said that i had to stop by the store and William wanted to go with me. He asked me to go and get the motorized buggy and hge would follow me in the store.
     
     
     
    He really did have a big day yesterday. He will need a day of rest today.
     
     
     
    Ruth
     
    I learned about wheelchair clinics at TIRR on Friday. The wheelchair clinic will help get William fitted. I saw a number of stroke patients with arm platforms on the wheelchair. I had not seen those before. I will call on Monday and ask the Doctor for an order for the clinic.
     
    I like the walking sticks also.
     
     
  19. ruthpill
    We just had our baseline study done today. Tirr is the 3rd rated rehab place in the US per Dr. Noser. She said that it is good but not as good as it should be.
     
    They tested the strength of the leg. Could William hold it up in the air while lying on the bed. No. Then can you push the leg out and behind you while lyig on your side on the bed. Can you tap your toes? No. Willliam walked back and forth 3 times about 10 feet. This was timed. Then he had to walk for 6 minutes. This is just a pilot study....perhaps 26 clients. This is a study using te lokomat vs regular PT. Either way Intensive PT daily (5 days of the week) for 2 months. This is at no charge to us.
     
    Dr. Noser talked with us and mentioned that the health care reform will hurt academics and research. Insurance will only pay for scientifically founded results. Of course, research has had a hard time coming into research money.
     
    It is such an eye opene. This TIRR rehab place had people coming in for therapy and they were in much worse condition than William. Dr. Noser said that 20% of he survivors of stroke are bedridden.
     
    I had to get to the medcal center for a 9:30AM appt This means that I had to get William into the car by 8AM. Traffic was so bad that I just
     
    made it there by 9:30AM. It was worth it. We hit Luby's on the way home. Enchilada Tuesday. Yipee.
     
    Ruth
  20. ruthpill
    We went to the pool at 10:00AM this morning. THe swim lessons had been cancelled, because of Thanksgiving. This means that we got our walk in the water done early. We were fiinished by 11:30AM.
     
    Next we went to the library to return some CD's that I had borrowed. I also had to stop by CVS to pick up a new mop.
     
    Well, we were starving by this time. So Whataburger, here we come. William and I ordered and ate in. William had a vanilla milkshake with his lunch. He loves Milkshakes.
     
    We decided to go home and rest and watch TV. We are so happy that we have direct TV.
     
    I ordered an electric exercise mini cycle on overstock.com. This is a foot pedal exerciser that will run electrically. I hope that William likes it. It will be his early Christmas present. I read some of the reviews and it sounds like this will work well for William.
     
    I gave William an extra 10mg Lisinopril this morning and it brought his blood pressure down.
     
    Left over turkey for this evening. I bought another can of cranberry sauce. William loves the stuff.
     
     
  21. ruthpill
    William managed to stay at work with me for 6 hours. But, he was up 2 hours earlier. That means that he was up for 8 whole hours. He has not done that since before his stroke. He rambled around the store in his electric wheelchair and sat in one of the lobby chairs at time. The only problem was that his bottom was really sore. I should have put the ROHO cushion on the electric wheelchair. We really love that ROHO cushion. It is filled with airbubbles and you can sit all day and not get a sore behind.
     
    We went over to Luby's right after the work. The line was too long!! I ended up going to the takeout window and ordering 2 meals to go. A number of other people did the same thing. I was too tired and hungry to wait in line for an hour for dinner. William was really hungry. He actually wanted to leave work and get something to eat at noon. I had to remind him that I could not leave until 2PM.
     
    We did have a wonderful meal at home and relaxed and watched some TV.
     
    William fell asleep and snoozed for 3 hours.
     
    Today is the big shopping day. But, I am not a shopper. I will be taking William to the pool this morning. I did give him his meds at 7AM. His blood pressure was high. I am going to add an extra lisinopril this evening. I did that the other day and the Am reading was good. I will do that this weekend and monitor the results. It is all trial and error. I will be seeing the cardiologist on Wed. and will let him know the results.
     
    We will be having a change of schedule. I will start working the morning shift and will have caretakers come in the morning. This means that William will have his pool time in the evening. This is not my preference, but my co-worker is not able to hande the AM shift. I need to work it and figure out what the problem is.
     
    I am not looking forward to this change. I had such a nice schedule worked out for William and now we will have to change. But, hey that's life. Change is what is normal. I told William that we may even like this more.
  22. ruthpill
    Well, William now thinks that I am the bloodpressure natzi. I have been pestering about the readings. I take them 3-4 times a day. It just seems that they run high. I called the cardiologist and we will be seeing him this week. I need an adjustment so that we can get into the clinical study.
     
    Ruth
     
     
  23. ruthpill

    Senior Yoga in a chair

    By ruthpill,

    I can't believe it. William really wanted to stay for senior Yoga. After our swim and shower, we wandered the YMCA and watched a little of seniorize and then stayed for senior yoga.
     
    It was good. Lots of stretching and balance. William enjoyed it. I was there and moved the left arm and shoulder. It is amazing!! the arm and shoulder were much more pliable after all of the stretching.
     
    We shall try again next Monday.
     
    Well, off to the pool again. WE have an appointment with the rehab MD today at 11AM.
     
    I am going to ask him about the blood pressure and the clinical trial
     
    We will stop at the hospital and visit our neighbor who is in with pneumonia right now.
     
    then lunch and me off to work.
     
     
     
     
     
     
  24. ruthpill

    A moment to breathe

    By ruthpill,

    I made a list of meds and blood pressure readings to bring to the rehab doc tomorrow. We have a visit with him for Tues. So I thought why not ask him about the blood pressure readings and the clinical trial. I will keep you posted. Yesterday the bp was good expect in the AM. For some reason the AM reading is usually a bit high.
     
    William is slowly learning how to use the control for direct TV. Yes, we have too many channels. WE have decided to make a favorites file and limit our selection.
     
    It is getting cooler in Texas. We are in the 60's. This means that we need to put on a jacket when going outside and long pants. I cannot imagine having to bundle up in cold weather. Shorts and t-shirts and sandles are so much easier.
     
    I will have William practice with the electric wheelchcair today. He is so happy to have it. Yet, we have not used it very much yet.
     
    Well, I will be waking William up to go to the pool. Let's hear him grumble.
     
    RUth
     
     
  25. ruthpill

    An hour......

    By ruthpill,

    William is a clock watcher. He watches the clock when we get in the pool. He knows that I want an hour workout. At least he has learned this. It seems to take an hour for the hydrotherapy and an hour for the shower.
    We went out to lunch with another stroke survivor and caregiver today. William enjoyed our lunch. It is nice to have the cyber world and the virtual world. William is ready for a nice long nap. I have had him up and running since 7AM. He still gets easily fatigued. As I sit here typing...I see the hummingbirds out the window. I hope that they stay awhile. I know that they migrate through Texas.
    I have noticed that William's attention has gotten better. He has ADHD and used to be on medicine. Now, without medicine he can really retain what you say very easily. This is strange. Perhaps this is because he can not move about so much.
    I need to get a little rest and get ready for work.