Experience is a Great Teacher

Assertive or Aggressive 2

While I appreciate the years of education a professional caregiver has, it’s still really hard for me to leave Mark at the hospital. I realize they can be an expert in their field working with people who have a wide variety of disabilities and illnesses. They may have the education and the skills of an excellent doctor, nurse or therapist, but that doesn’t make them an expert on the person they are treating. Even though I know this, it’s difficult to stay calm when they don’t know how to do something which seems obvious because it’s common to me such as transferring, bathing and the other daily tasks of caring for Mark.

The memory of three hospital admissions in 2013 for blood clots is still etched perfectly in my mind. They didn’t know how/or want to transfer him so he was bedridden for a few days. I watched him get weaker as they treated him like he could not move. I asked the doctor if the nurses and aids weren’t getting him out of bed because of the blood clots. He said no, in fact, lack of movement brings on blood clots. I asked him to please order Mark some therapy, which he did. To my surprise, the therapist wheeled in a bedside lift.

“I don’t use a lift to get him up,” I said.

“Well this one will not only help me get him up, but he can walk with this lift stabilizing him.”

I watched anxiously to see how this would work. The harness was complicated and appeared to be new to the therapist. Mark was in a weakened state and this method of getting up took little effort on his part. He wanted to help, but was confused by this foreign process. It took nearly thirty minutes to get him in an upright position, leaving little time for walking.

“He can walk with a walker,” I stated.

The therapist looked at me like I was crazy.

“I will bring it tomorrow and we’ll show you,” I said and the next day, I did just that.

With assistance from the therapist and me, Mark took steps the length of the hospital room. The therapist was impressed and amazed he could do it. I was shocked at how fast he had weakened because he usually walked better and much further.

It took the full month of August 2013 in a rehab center to build up his strength again. This hospital experience taught me I needed to let them know immediately Mark’s capabilities and I took the walker to the rehab center.

With the bitter taste of last year’s experience still fresh in my mind, I was worried about how this year’s hospital stay would go and decided I needed to be more assertive with the professional caregivers. Shortly after we entered his room and met the nurse and aide who’d be caring for him for the next two days, I asked, “Would you like me to show you how I transfer Mark into bed?”

“Sure,” they replied in unison.

Standing directly in front of him, I lifted his foot and I swung the leg rest to the side to move it out of the way. I followed the same routine with the other foot while Mark unfastened his seatbelt. With his feet on the ground and carefully positioned with the foot closest to the bed out in front of the other, I placed my feet in front of his to hold them in place. I wrapped my hands over his shoulders and tucked a few fingers under his arms. With my knees pushing against his legs, I pulled upward with my arms as he stood.  He’s 6’2” when he’s upright and his height usually surprises people when they see him stand for the first time. I used my legs to help direct him as we pivoted to the side of the bed and I lowered him to a sitting position. As he lay back, I picked up his legs and swung them onto the bed.

“You do this by yourself every day?” the nurse asked.

“Yes. It’s really not that hard after the initial pull. I use my knees against his to help him straighten upward.”

“It looks hard; you must be really strong,” she said.

Some people may take that as a compliment, but I felt like she was saying, that’s too difficult for us to do. I left for work worried that he would be confined to the hospital bed all day long and when I returned at night my worry was confirmed. Someone had even written on the white patient information board in his room “bed rest”.

My blood nearly boiled, but I took a deep breath and asked who wrote the “bed rest” order. No one knew, so I wiped it off the board. “He can lose strength so quickly and with me being the only one to transfer him at home, I need him to stay as strong as possible.”

“You have your routine and you’ve been taking care of him for a long time. It’s second nature to you, but it isn’t to us,” the nurse said.

I knew she was right, it is second nature to me and not to them, but I was also right, he needs to move to keep up his strength. By both of us being assertive and expressing our concerns, we came to an understanding with a plan for physical therapy while he was there. I didn’t necessarily like that they wouldn’t get him up and it’s hard for me to understand that some nurses and aides are not comfortable doing transfers, but we found some middle ground. I realize that rehab centers are different than hospitals where the majority of the patients are capable of walking or transferring into a wheelchair with minimum assistance and transferring Mark does take more assistance. However, I do it every day so it’s an obvious part of caregiving to me.

It’s not always easy to express what I think and feel in a positive way, creating mutual respect, when I view things differently than another. I don’t want to be passive by giving into what I don’t believe is right. If I don’t express my feelings, I get upset inside and after time it can build until I explode or become aggressive by yelling or being sarcastic. I don’t want to be disrespectful of others and their opinions. Being assertive is the ideal middle ground—where I want to be. Sharing what I have learned through my experience with professional caregivers can be intimidating and difficult. Tuesday I’ll share some great information I found on how to be assertive without offending another.

What positive experience have you had sharing what you know in a difficult situation?

Exercises That Will Floor You

Over the past seventeen years, Mark’s exercise program has changed a bit as he has improved or his needs have changed. On Monday and Wednesday nights, when the volunteers come to help Mark, we start by getting him down on carpeted floor. This takes two people, one on each side.

Exercise tools: a 2′ x 4’sliding board, 2 barbell weights, 12 plastic cups, 2 wash cloths, folding chair, doorway bar and walker.

Together we do the following exercises:

1.  BRIDGING – While lying on his back with knees bent, Mark pushes his hips up as far as he can, holding a second and then lowers his hips back down. A person needs to hold Mark’s feet down so they don’t slide out and steady his legs, keeping his knees together. 25-50 times

2a. BUTTERFLIES – With arms straight out against the floor at shoulder height, with a weight in each hand, Mark lifts his arms straight up over the middle of his face. While Mark does this, a person can do the leg press (2b). 30 butterflies per each leg press

2b. LEG PRESS – Since Mark is in a wheelchair all day long it’s hard for him to straighten out his legs. Mark can do the butterfly exercise (2a) while a person is pressing the leg down to the floor with one hand above the knee and the other hand below the knee.  Hold each leg down for 30 seconds 

3.  HIP STRETCH – With knees bent and feet together, stretch the knees apart.  Hold 30 seconds – 3 times

***Take Mark’s shoes off and use the sliding board for exercises 4 and 5***

4.  KNEE BENDS – With Mark lying on his back with the sliding board under his legs and feet, a person assists Mark in sliding his foot towards his buttocks. Mark can do this exercise well with the right leg, but the left leg needs a lot of assistance. Sometimes another person has to move it a few times before Mark can do it on his own. Sometimes the brain does not kick in at all and on those times the helper needs to bend the left knee upwards and let Mark try to hold it there, without letting in slide down the board. 10 knee bends per leg

 5.  HIP FLEX & ABDUCT – With Mark lying on his back with the sliding board under both legs, slide 1 leg straight out at a time in a snow angel movement.  His left leg will need assistance. Each side 10 times

***Put Mark’s shoes back on***

6.  CRUNCHES – This exercise uses 12 plastic cups. For this exercise a person sitting on each side of Mark will help stabilize his bent knees. One holds the stacked cups at Mark’s shoulder height about two feet from his shoulder. Mark reaches across his body with his right hand to get one cup that is held on his left side. Once he has the cup, he puts it in his left hand and reaches across his body to set the cup on his right side. This exercise rotates the upper body while the lower body is stabilized.  He will move the stack of cups to one side and then back again.

***Mark rolls over on his stomach with a towel placed under his face for comfort***

7.  BACKWARD SHOULDER STRETCH – With arms down by his side, Mark lifts his arms upward together and then back down. 25 times

8.  OUTWARD SHOULDER STRETCH – Both arms straight out at shoulder height. Hold stretch for at least 60-90 seconds

9.  SUPERMAN STRETCH – Both arms straight up over his head like superman. Hold stretch for at least 60 seconds

10. QUAD STRETCH – While lying on his stomach, Mark bends his knee backwards trying to kick his buttocks. Each side15 times

11. PUSH UPS – While on his stomach and hands under his shoulders, Mark should push up.  He has a hard time with this exercise, but it’s good for him to try. 15 times

12. BALANCE ON ALL FOURS – While one person is helping Mark push back with his arms, another will help bend Mark’s knees forward and lift him up so that he is balancing on his knees and hands. This is necessary because Mark is so ridged. Hold for 60 seconds

Mark doing tall kneeling exercise with Lee & Kathy Sadler

Mark doing tall kneeling exercise with Lee & Kathy Sadler

13. BALANCING – Use the back side of a folding chair for this exercise. While Mark is on his hands and knees he shifts his weight to climb the back parts of the folding chair, similar to climbing a ladder with his hands. 3-5 times

14. TALL KNEELING – Again, with the use of the back side of the folding chair, Mark wil climb up until he is on his knees. Move the chair and have Mark balance on his knees. A person needs to be on each side of Mark in case he loses his balance. Balance at least 60 seconds without holding onto the chair.

15. STANDING – From the tall kneeling position, with a person on each side they will assist Mark in standing up.

Mark at the bar16. BAR STANDING – We have a bar that runs across a doorway between braces. We also have a foot brace for Mark’s feet while he does this exercise. Mark stands, holding onto the bar for at least 60 seconds. It takes another person to assist him up to the bar and give verbal cues in keeping his balance with upright posture and straight knees.

17. WALKING WITH A WALKER – Mark can walk with some verbal cues and support.  One person should follow behind him with the wheelchair so he can rest when needed. This is done around the house or outside when weather permits. Usually takes 5 to 10 minutes and is Mark’s goal for the night.

***The total time for exercise routine is 45 – 60 minutes***

Click below to see Mark walk.