I arrived just before 9:00AM and my dad was in good spirits and my mom was feeding him his breakfast. My dad didn't eat very much for breakfast because he was trying to figure out if the food was what was making him crash every morning after breakfast and not be able to stay awake. After 20 minutes of eating he was still feeling fine. The nurse came it to give my dad his medicine and my dad asked what each medication was, what it was for and what the side effects were. The nurse, Susan, was very understanding and patient and looked up each medication individually and read my dad the information. One of the medications that he was supposed to take was to control nerve pain and the side effects of that medication were drowsiness, dizziness, swollen legs, dry mouth, etc. We could pretty much say that my dad was experiencing almost all of the side effects listed, however he still had to take the medication until he spoke to the doctor about it. So, he took the medication and within 15 minutes he was exhausted and falling asleep. The doctor came in later that day and said that he would take my dad off of that particular medication and see how he did. Let's hope that is the problem and it's that easy of a fix!
Josh who is one of my dad's occupational therapists came in around 10:00AM to work with my dad. My dad asked him to take a look at the toilet/shower wheelchair to see if he could raise up the chair because it didn't fit over the top of the toilet like it was supposed to. Josh looked at it and said he thought he might be able to fix it, but asked my dad if that was the best use of his time. The occupation and physical therapists are strictly scheduled and if they are only supposed to be with you for 30 minutes, no matter what it is they are doing it counts towards that time. My dad had Josh bring the wheelchair out of the bathroom and said "let me look at that, turn it over, seriously I am a mechanic I can tell you if it can be raised or not". So Josh and I turned the wheelchair over so my dad could have a look. Although we had already determined it could be raised my dad confirmed that and asked Josh to fix it.
While Josh was fixing the wheelchair I helped my dad get his computer setup. He turned it on all by himself, was able to use his track ball mouse and a special assistive device they gave him to type (one letter at a time) that straps on to his left hand. He has to type in all caps though because it takes too much effort to try and hold down the shift key and type a letter at the same time. My dad used the outside of his right hand to move the trackball mouse around and then uses the bottom of his thumb on the outside of his right hand to click the buttons on the mouse. The first thing my dad did when he got on his computer was open up Strava and make sure that he gave kudos to all of his friends who had been riding their bikes recently.
While my dad and I were working on his computer, the lady who is a rep for the company that makes the bed my dad is testing out, came in and told him that they did find a bedside table that would work with his new bed and that they would have it to him by Friday or Saturday at the latest. This was great news because right now my dad is using a upside down lunch tray on his lap and the bedside table will make things a lot better.
Josh came back with the wheelchair all fixed and it fit over the toilet just fine. It was time for him to go so he couldn't stay longer, but I told him it was okay because while he was fixing the chair my dad and I were doing occupational therapy and explained to him how he had been using his computer. Josh smiled and told me that I should charge my dad for my services and we all laughed.
Next came in the physical therapist and although I don't remember her name, I know that she likes to ride mountain bikes. We helped my dad get into his motorized wheelchair and headed down to the physical therapy workout room. My dad wasn't too happy that I wanted to take pictures, but I told him I had to because everyone has heard about him in his chair but hasn't seen him in it. I didn't get very many smiles, but he let me take the pictures.
The green piece of material you are seeing behind my dad is what is hooked on to the hoist to lift him in and out of bed and his wheelchair. Normally it is removed because it can cause sores if left bunched up, but when going from his room down to therapy (3 rooms away) they leave it in place so they can easily lift him out of his chair and on to the therapy mat.
My dad requested 1 hour and 30 minutes of therapy today because he wanted to get all the therapy in that he could since he wouldn't be getting his afternoon therapy. He requested that the therapist not work him too hard because he wanted to feel okay for the field trip he was going on that afternoon. The therapist decided to work on having him sit up on his own and balance (9 seconds on the side of the therapy table is his record so far). She also worked with him a lot on turning over from his back to his side. Both of these tasks seem so very simple, but for my dad it isn't. He only has the use of some of his muscles in his arms, chest and neck so essentially he has to move the rest of his body using only the few muscles he has. I would have taken pictures, but the therapists asked that I not take pictures because they don't want their faces all over the internet and I will respect their requests. I can take pictures if they aren't in them or if you can't tell who it is (like the back of them), but that is really hard to do because they have to work so closely by my dad. After a while my dad started to wear out and couldn't perform the way he wanted and his neck and upper back started aching really bad so they decided to have him lay down and the therapist stretched his wrists and shoulder blade muscles. Therapy went pretty well today and my dad only fell asleep a few times. The longer session allowed him to take his time and rest in-between activities. We all felt the longer session was more beneficial and that we should request them instead of smaller split up sessions.
A funny story for the day: While during therapy, the physical therapist kept looking right at me and speaking to me about my dad and asking me about his sleeping habits. I thought it was a little weird but thought that she was just trying to include me. Later, the therapist awkwardly found out that, I am not my dad's wife and that my mom is not my dad's mom and that my dad is older than 40 and that we aren't polygamists. She was confused with how young we all looked and didn't want to assume we were polygamists so instead she assumed that I was my dad's wife and my mom was his mom. We all had a good laugh and then I said, "from now on, instead of waiting for the nurse, tech or doctors to ask who we are, we should introduce ourselves". This will hopefully save them the time of wondering and making up awkward stories about us.
After therapy my mom and I used the hoist to life my dad back into his bed without any help from the nurses or techs. We are getting pretty good at it! Lunch was also waiting when we got back, a cheeseburger.
After lunch the occupational therapist, Ron, came to pick my dad up for his afternoon field trip. My dad was able to go home for a few hours so that Ron could assess my parents house to see what needed to be done to make it safe and comfortable for my dad when he comes home from the hospital. My mom and I were very worried about my dad because you could tell he was tired and in pain and he wasn't as talkative as he usually is. But he toughed it out and Ron was able to get him loaded into the hospital van for the ride to his house.
My Grandpa Jay (Jeff's dad), and my dad's brothers (Randy & Terren) met us at the house so that they could know what needed to be done and what they would need to help with. We forgot the transfer board so my dad had to be lifted in order to transfer him from his electric wheelchair to a push wheelchair so that we could get him in the house. It was a good thing that my uncles and grandpa were there to help out. The therapist and my two uncles lifted my dad while my grandpa and mom were in charge of transferring the cushion from one chair to the other. It took quite the effort and my dad said he felt it in his muscles. They then had to get the wheelchair up the front stairs and it to the house. It was really good to have my dad there to make the decisions as to how he and my mom wanted things to be. After much talking & measuring decisions were made about what renovations should be made and to be honest it is a little more than what we all expected, but it was good to find out now rather than later. It is a bit overwhelming, especially for my mom, to think about all that needs to be rearranged, gone through, and organized just to get ready for construction, but as a family we will help my mom do this so that she doesn't have to do it alone. We are so very blessed to have three contractors/builders in our family!! I can't imagine how other people have to do all of this and have to find the resources on their own. We are so glad to have the resources and help right in our family!! Terren built my parent's house so he knows the structure pretty well and what can and can't be done during renovation. Between the three of them they will be able to come up with the best solutions.
Here are some pictures from the field trip to my parent's house:
Made it in the house!!
All ready to go back to the hospital.
While my dad traveled back to the hospital I went with my mom to take care of some business stuff for my dad. After that we finally ate lunch around 4:30pm and then headed back over to the hospital.
My dad had three bike buddies come visit (I am sorry I forgot your names!). It was good to see them talking with my dad and laughing about old times and talking about the church, etc. We tried to convince them that they needed to write some stories for the blog so hopefully they will. Thanks for coming to visit our dad, he really enjoys his visits with his friends and family!
Dinner came and it was chicken salad with bleu cheese dressing and a wheat roll. My mom fed my dad and he thought it tasted pretty good. He said he felt hungry which is great!
Tonight the hospital had a special guest speaker, Chad Hymus (http://www.chadhymas.com/), and all of the therapists recommended that my dad attend. Chad is from Tooele and he sustained a spinal cord injury 14 years ago leaving him paralyzed. Chad travels all around the world giving speeches. Everyone at the hospital told us it was way easy to get from building 5 to building 1 to listen to Chad and all we had to do to get there was go to floor 1 and head south. The plan for me was to go with my mom to get my dad settled and then leave, but it wasn't quite as easy as we expected it to be and it got a little frustrating. After asking for directions it was determined that we had to go outside in order to get to building 1. When outside we still didn't know what sidewalk would take us where we wanted to go so I had to do a little "pre-scouting" to see what path to take before having my dad travel in that direction.. My dad had never driven his wheelchair more than a few minutes and the drive to building 1 was really hurting his arm and wrist and he had to keep repositioning. My dad had his wheelchair on the lowest speed because it made my mom and I feel more comfortable, but it was really bothering him and he said he felt like a puppy dog following behind. I then turned around to face him, patted my leg and said "come on, come on" in a high pitched voice. My dad crossed his eyes and stuck his tongue out at me showing his distaste in my teasing him. By the time we got to where Chad was speaking my dad was extremely tired and needed to take a little nap before the presentation started. Given the circumstances we decided it would be best if I stayed for the presentation so that I could help my mom and dad back to building 5 when it was over.
I am glad that I stayed for the presentation. Chad talked to us about bridging the gap between survivor and caregiver, change, family comes first, finding the answer to "why am I here?" and bunch of other motivational advice. At the beginning of the presentation Chad asked for caregiver volunteers and the crowd wasn't responding so I raised my hand and said that I would help. He had one other lady and I put a small 8oz bottle of water on the ground and then he told us to take a drink out of it. We did what any other normally abled person would do, we bent down picked up the bottle, twisted off the lid, took a drink, put the lid back on and placed it back on the ground. He then asked us to take a drink without using our hands or fingers. My first thought was to ask someone to help me so I asked him if I could ask someone else and all he said to me was you can't use your hands. I then decided to ask a complete stranger who was right next to me if she could help me get a drink and she was refusing to help me as if she would get in trouble for helping...it was a bit frustrating! The other lady who was trying to do this with me then uttered the words "I CAN'T!" and that was exactly what Chad was looking for to happen.
He then explained that as caregivers we shouldn't get upset and be pushy when a survivor says that they can't do something. Even though the caregiver may see a million ways a task can be done the survivor doesn't really feel that way at the moment. Compassion and understanding for the frustrations that survivors go through was the point that was being made during this activity. But after that Chad said to us, "take a drink". I obviously couldn't depend on someone else to help so I had to use my brain. I picked up the bottle with my teeth, used my wrists to help me untwist the cap with my teeth, spit the lid out on the ground and then took several drinks of water and set the bottle down on the ground with my teeth. Chad praised me for doing such a good job and then the other lady decided to take my approach as well. I was so proud of myself!! I would have never felt that if someone else helped me.
But, then he said "your not done the lid is still off". I was thinking to myself wow, I guess I am going to have to put my mouth on the floor, pick up the lid turn it the right way in my mouth....and as I was thinking this he told us to wait. He said that he wanted the lid back on but that we couldn't do it for ourselves. Well, if I can't do it for myself then I have to have someone else do it for me. None of the people who were close around me, people I could touch, came to my aid. A lady from three rows behind me came to help me put the lid back on the water bottle and then touched me on the shoulder and said, "there you go". In front of everyone I started crying. Why was I crying? I didn't even really know for sure and now other people were starting to cry. I think we all had our own insights, but mine came as a deep appreciation of gratitude for the complete stranger who decided to rise above everyone else and care enough to help me. Also, when Chad told me that I couldn't do it myself I felt small and insignificant, I may not have my hands and fingers but I am still smart and I probably could have figured it out.
I was able to feel tonight a small amount of feelings that both survivors and caregivers have. The message I received is that both survivor and caregiver(s) will need to change they way they think about things. They also both need to have the chance to serve. Service is the key! Even though the survivor may be able to do something on his own, he can help the caregivers by allowing them to help. And the caregivers in turn need to allow the survivors to choose when they want to be independent and when they are ok with help.
Because I volunteered to help I was given a free signed copy of Chad Hymas' book and I look forward to reading it with my dad. Overall the presentation that was given was uplifting and motivating - Chad did his job. Our dad is also doing his job as he is already uplifting and motivating people, he is finding a way to serve others in his current situation and that is truly amazing!!
It was very dark out when the presentation had ended and I was glad to be there to help my mom get my dad back safely to his hospital room. Dad was tired and anxious to get back to his room and increased the speed on his wheelchair so now my mom and I were fast walking to keep up with him. This made my mom very nervous as she pleaded for him to slow down, but he wasn't going to listen this time. After barely avoiding some gravel and some disagreements about how fast my dad should go, a stressed Annette and tired Jeff made it back to his hospital room. I had to laugh to myself as I thought of what had taken place. The event wasn't new to the three of us at all, the only difference was that instead of my dad driving his truck he was driving a wheelchair. That really was the only difference, my dad has not changed and neither have we. However, if we take the advice from Chad Hymas, we will all learn to change for each other so that we can be happier and this will in turn help us all avoid small disagreements like how fast or how slow my dad should drive. It took Chad & his family several, several years to learn this and master it and as I told my mom last night, our family can get there it will just take time. One year from now things will be better and five years from then things will be even better. It's all going to take time and we will have to learn to be patient with ourselves and with each other.
Once in the hospital room my mom and I used the hoist to get my dad out of the chair and in to the bed, took off his leg wraps, undressed him to get ready for bed, put on the calf muscle wraps that prevent blood clots, put on his "boots" to prevent foot drop, covered him with his bed sheet, fed him a cookie (because he said he was hungry), got him water for the night & then finally brushed his teeth. It was quite the workout for all three of us. Today has really opened my eyes to how much my mom really does to care for my dad. Most of what she does nurses should be doing, but she does it because she wants it done right and at the right time. My dad is so blessed to have someone like my mom caring for him everyday! Its tough being a survivor, but it is also just as tough being a caregiver If you think about it, both survivor and caregiver need the same amount of help from others willing to give it. I am grateful to have the opportunity to help both my dad and my mom. A special thanks goes out to my husband Zach for understanding that I was needed at the hospital and for taking care of our two young girls by himself so that I could help my dad & mom.
I will close by leaving you with another funny story:
My dad is extremely worried about someone, a bystander, getting hurt by his electric wheelchair. He would prefer that we don't walk right next to him when he is driving because he doesn't want to accidently hurt us. Well, with that being said, the hospital room is pretty small and there isn't a whole lot of room to turn around the electric wheelchair so I was trying to just move the controls and get it to back up in the right place but wasn't having any success. My dad then told me he wanted me to get in the chair and drive it because I would be safer and wouldn't get ran over by the chair on accident. So I got in the chair and lets just say it was not any safer!! Maybe safer for me, but not for my dad or mom or the furniture in the room. I couldn't get the chair to do what I wanted to and I was getting frustrated. Long story short, I ended up dragging my dad's bed controls with me and ramming into a chair and chest of drawers. I cannot drive that thing!!! I gave up pretty quickly and my mom finally got it parked. I am very glad my dad knows how to drive it because if I had to drive one of those electric chairs it would take me a very long time to learn how to work it and to not hurt others or furniture. LOL!!
1 comment:
First, I wish your dad a successful and healthy recovery. Prior to reading this blog post, I had not heard of Chad Hymas, but I am so glad that he had an inspirational influence on you guys; it is those who have recovered from a hardship that give us hope and determination that we too can follow in their footsteps.
Brendon Hudgins @ MedCare Pediatric
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