ruthpill

Stroke Caregiver - female
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Blog Entries posted by ruthpill

  1. ruthpill
    Today has been a wonderful day. Got up before the sun. It was dark outside. 5AM. Got William up and we were at the YMCA at 5:30AM. Pretty good progress. Made it into the water and walked and planked and did leg lifts. Got into the fabulous shower. They have a walk-in shower. It is easier to use than the shower at home. So, William gets showered and shaved. I use lots of powder. William insists that he is going to have inhalation of powder problems. I love to use baby powder. It makes him smell so good. He has to stand up and down alot. THen he has to wait while I take my shower.
    We drive to the grocery store. I need to pick up some oatmeal. But, of course. I couldn't resist a donut. It is not even 7AM and we are home.
    William gets his meds (BP, heart and vitamins). Now he gets to go back to bed. He is snoring away. I went upstairs and was working on a strap.
    The OT has a strap what has velcro on it. They use it to wrap Williams arm or leg to the bicycle or arm cycle. I made one for home use. When William gets up I will try it out. I am hoping to put him on the bike at the YMCA and or the hand cycle at the YMCA. I have a little one at home. But, He will feel a real sense of accomplishment if he is able to use on the one at the YMCA. WE will just have to see how good a job I did with the strap.
    I was reading stronger after Stoke. My favorite stroke book. It always re-emphasizes what I need to do to work with William. Today, I have re-dedicated myself to stretching hands,fingers,arm and leg and foot.
    I made up a schedule for the caregiver to follow. I ask them to do these with William several times during the day. I will read this to William when he gets up.
    I have started making smoothies. A friend told me to put fresh fruit in little baggies and then freeze them. I need to cut up a watermelon and stick it in the freezer. Then take them out and throw all into the blender with some juice or frozen yogurt. Healthy and easy to do.
    Yesterday, when I got off work. william surprised me. He wanted to go out to eat at Panera's. His caretaker had taken him there for lunch and it was good. He wanted me to experience it. That was sweet. Since, I am always starving after work.
    Off to work on the watermelon now.
    I leave for work at 1pm TO 10pm TO DAY. wILLIAM HATES my long work days. But, he survives.
  2. ruthpill
    I am beginning to learn how to use the help that is offered to me. At the beginning, I felt and William felt that I had to be there for everything. But, now, I have 2 second family ministries offering to help me out. One is with our present church and one is with our past church. The old church has somebody offer to come out once a week. They call and see what day is convenient for me and them. They will stay with William for 1-2 hours. I usually try to shop or go to the gym. Our present church, has somebody come twice a week. One of the people with take William out out lunch and bring over a casserole , so that I won't have to cook. They know that I work until 10PM. THe other friend takes William to one of his therapy sessions and then out to lunch. This is a big break for me all morning. I gets lots of stuff done. Visit friends and lounge in the sauna and swim.
    I had a calll from one of the volunteers yesterday while I was at work. And i had the presence of mind to say...Yes, Thurs. would be a good time. 11AM
    Somedays at work. I cannot focus on my home schedule. So this coming week I have help onWed, Thurs and Friday. What a treat!
    I am slowly learning.
  3. ruthpill
    William has read the book the China Study, recommended by our MD. Anyway, the just of the book is to not eat Meat or wheat products. pure vegan diet. I told William that I like fish and chicken. But, if he wants to try this. I guess OK. BUt, I just don't know. He has always been a meat and potatoes sort of fellow. THis is a drastice change. You would think that I would be the vegetarian. I am the one that likes that type of food. I went and bought lots of fruits and veggies for him. I had him eat some california rolls. Sushi without meat or fish. I told him that he would have to swallow alot more pills if he becomes a vegetarian. He is not liking the big calcium and multi vits now.
  4. ruthpill

    WILLIAM'S Journey

    By ruthpill,

    On the rehab floor. We are there for 2 weeks. His arm gets swollen. So not much OT is done. I wrap the arm to push the fluid back into the body. This was suggested by my son. He was doing his residency. He said that that is what they do in the hospital. Compression to push the fluid back into the body from the extremities. This hospital does not do it. So I do it on my own. It works. The swelling goes away. I wrap the arm every evening. PT,OT, ST life revolves around those three entities. William feels that the speech therapy person, is worthless. THe cognitive is not really explained all that well. She takes along time to get the initial baseline made. Anyway, time is ticking away. 2 weeks for us to get it together. They come in every morning at 6AM or earlier for blood samples and blood pressure check. They do this because the next shift comes on at 7AM. Change of shift. THey do not come in to dress him. That's my job. Breakfast is down a floor. I never know if breakfast will be in the dining room or his room. I go up and down looking for it and trying to figure out if it will be on time. We have therapy at 8AM and it is essential to get Breakfast over with before that. and of course the all worrisome. Bathroom problem. That has to happen! I still need help. I cannot help transfer William yet. Actually,I am learning. But, wiping him is not possible by myself at this time.
    I finally get it arranged to have breakfast in his room. This going up and down the elevators with the bathroom thing and therapy in an hour is not working.
    Just writing about this brings back horrid memories of what we went through.
    I will continue later.
  5. ruthpill
    We start outpatient therapy at Methodist Willowbrook hospital. It is like a sister hospital of the downtown one that William had been in for 2 months. We have PT, OT and ST. I had chosen this facility because it has a hydrotherapy pool. I did not know that hydrotherapy is not covered by insurance for stroke patients. The PT person works with William. Primarily doing transfers, OT tries to help the arm, ST is the best of the 3 at this place. I am hoping that we can work with this place. I know that William needs alot of help. He cannot walk yet.
    A month of PT with Cassandra, is enough. William is getting frustrated with her and so am I. I try to giver her suggestions and she says that she is the therapist. Well, she tried to put me in my place. But, what she was doing was not working.!!! I could see that. I spoke to the director and got a different PT. I has spoken to the ST person about this and she agreed that they did not have many therapists that did neuro type of work. They were primarily Ortho therapists. Well, I learned that stroke patients do have a neurological component to their situation. The physical therapists assistant that we get is much better than the PT. We go on for awhile longer. Now the OT person is having a problem with the neuro part of the stroke. I am thinking of having OT changed but there is not much to choose from.
    I just happen to meet one of my customers, who is a PT, just moved here from North east US. ANyway, she sees us at Methodist. I tell her about our problems she says that she also works at Tomball. They are much better for stroke. I have another customer whose husband had a stroke and utilized tomball for rehab. He really likes it. I switch William to Tomball for rehab. This place is totally different. WE actually see other stroke patients there. They have a lite gait and more equipment for stroke rehab. The PT and OT are all neuor trained for stroke rehab. Eureka!!! Finally found a place to get decent rehab for William. This took me awhile.
    The first rehab place was going to shut william off of rehab...too soon. He hated going. The clincher was the family get-together. OT was in charge . She said that she could not tell if William would not or could not do what she was asking him. I have since learned that I should have asked her what she was doing wrong. Now I have theraptists that will try different methods if what they are doing is not working. They don't stick with the methods that don't work. PT and OT were very please with William's progress. But, as you know the arm and hand need alot of help. It needed to find a good OT.
    The new rehab place got William into the lite gait and had him walking down the hallway. The second visit they had him on the treadmill. He has been going there for 2 months. Now, he is able to walk 50 yards with a small based quad cane with minimal assistance. This is just amazing!
    I still do not understand why they want him to swing his legs up onto the mat with the heavy orthotic on. That is not practical. At home when he is ready for bed....he will not have the heavy orthotic on. THey did this at the first place also. I need to ask about that.
    I must admit that I have not been working on the arm as much as I have the leg. I just can't seem to fit all of the exercise into the day.
    Today we got up at 6:30AM for church. WE like to get there by 8AM. So we go to service then Sunday school. We get home by 11AM. Just enough time for me to change and to change William. I take him to the YMCA for a little water walking. 1:30PM by the time we get home. I make lunch and then decide to take a breather. We watch a movie. Oh, yes stopped at the grocery store on the way home. A friend stops by to visit. Before you know it ..time for bed.
    I tried to call Fedex to ship out the saliva samples for the caregiver stress clinical test. But, fedex is not open on sunday. Swimming at 6AM Monday. I have all ready warned William. So he is sleeping and getting rested for tomorrow morning.
    At Tomball the billing people asked me about how much the insurance pays. I said that my year year runs from May thru June. So we just started a new year. So, we have a long way to go before it runs out.
    William is still onto the vegetarian thing, I have told him that moderation is needed. Some protein is needed in his diet to maintain strength.
    Good night til tomorrow
     
  6. ruthpill
    It is difficult to realize that you have to make so many choices on care. I believed that all rehabs would provide the same type of services. Wrong. There are alot of orthorpedic rehab units. I believe that the therapists really like ortho more. It is actually easier. They just have to sit there and count the number of reps of whatever that a patient does.
    Stroke patients have a brain component. This is neuorlogical. Sometimes lack of comprehension, memory, carry over, irritation, confusion. Just to name a few little neuo complications. The therapist has to be patient and know how to work with these complications.
    Our first therapists in outpaitent got frustrated and annoyed with the neuro component. She would not hide her emtions. This was quickly picked up by William. He would become irritated and angry and frustrated. We were going nowhere.
    I spoke to the director but it did not help. His staff is neuro directed.
    Now, I have a unit that does stroke and neuro work. They are so different. Very encouraging, and very willing to try all sorts of techniques to make the muscle work. they are very aware of the brain ---muscle connection. Of course the very obvious thing was the lack of other stroke patients. Now, we see other stroke patients all the time. William is able to say, I do not understand and they don't roll their eyes and say I told you that all ready. That was a learning experience. I hope that others do not have to go through that trial.
    I personally just repeat as often as needed. William picks up and eventually doesn't keep asking. I figure that it will happen eventually. Somedays he has a bad day and then he will ask again. But, each day is different.
    Today, we were at the pool at 6:30AM. Did alot of walking, leg lifts. planks and had a great shower. Came home and had meds and breakfast. Cereal with grapes and blueberries. William still takes his big pills in yogurt. I have started doing that myself. It works well. This way i get the pills swallowed and breakfast eaten.
    Off to find a fed ex drop off to send off the saliva samples for the clincial trial on stress.
     
  7. ruthpill

    AFO

    By ruthpill,

    In the first rehab place. They suggest that we get an AFO. I have no idea what they are talking about. But, as true to my nature I google it and find out what it is. That sounds good. The PT puts in an order. I am supposed to go to some shop and get William fitted for an AFO. When we get to the shop, the person asks what kind we want??? What kind?? I thought there was only one kind. I had seen the plastic ones. Well, what do you have and what are the differences?? She brings out a plastic one and one that is attached directly to the shoe. I ask her what she would suggest. She suggests the one that is attached to the shoe. It has metal rods that go along side the leg to just below the knee. She says that this kind is best in Houston because you will not feel the heat so much. The other one is right up against the leg. this one has less adjustments. So I take the one that is cooler and will require less adjustments. Now she wants me to leave a pair of shoes. Well, we only brought one pair of shoes with us. Nobody said anything about having to leave shoes. We leave the pair of shoes that William has on. While driving away, I decide to buy a new pair and I bring a new pair back to have AFO made into. So now, we get he old pair back.
    When we go to therapy. I reprimand them for not telling me about the choices. They did not know there was a different kind. It is best of the person comes to therapy .....So that the proper adjustments can be made. This place did not have balance bars. William did not walk or anything for her. I don't know how she knew about doral or plantar flexion. I questioned the PT person about this. They found it hard to believe that she did not walk him.
    I went in 3 weeks and picked up the AFO. HE tried it on. The maker said that it was fine. I wanted her to adjust it so that the toe was brought up more. She did that. I really do not know enough to make a decent decision.
    Our latest PT said that the AFO was perfect. Because William does not have any feeling in his left leg. THis is external and will not rub his leg.
    FYI I cut the top off of a sock and use it under the top velcro closure. This protects his leg ... because his socks do no come up that high on his leg.
    The AFO is working. I did talk to another rehab doc and she was surprised that the rehab doctor did not have input into the AFO. The PT and the person who makes the AFO make all of the decisions. I do think that the rehab doc should make some decisions. According to the other doctor they are trained to make suggstions on this. I guess they don't if they don't have to. I am trying a new rehab doctore now. I will have to remember to ask him about AFO's.
    Alot of stroke patients do not have feeling in the affected side. The comments do not make alot of sense.
    But, I am still learning about AFO's.
    Why do the PT and OT people think that it is necessary to swing your legs with the AFO onto the bed? WHo wears their shoes to bed?? I need to ask why they insist that William conquer this skill. The external AFo is heavy. The affected leg heavy and heavier with the AFO.