Embracing Life Challenges

Therapy isn’t fun, but the progress and inspiration I get from other patients encourages me. Last week I met JR. He’s a recent amputee who is embracing his new life challenges. I told JR about Uniting Caregivers and asked him if he’d allow me to share his story. He graciously agreed to let me interview him.

I took a seat in the large, open sitting room just as you enter inside Rocky Mountain Care in Riverton, Utah. This area is a popular place for the in-patients to read, do crossword puzzles or chat with visitors, so we found a quiet corner by the grand piano looking towards a fireplace which wasn’t lit due to the unseasonably warm November day. The home-like atmosphere makes this place comfortable, but I have to admit, I’m glad to be here as an out-patient.

JR is sitting in a wheelchair wearing a white T-shirt with dark blue, bold letters which say, “I’m retired. Do it yourself!” I told him I look forward to wearing a T-shirt like that someday. He told me he bought it in California as a statement to his grown children. They brought their kids for him to watch every day after he retired from a newspaper printing company in 2011. “Don’t get me wrong, I love my grandchildren, but I had just retired and wanted time to do some things which I couldn’t do before retirement.”

I nodded and told him it made sense to me.

“You know you never retire from family. I wouldn’t want to,” he said as he shrugged his shoulders. “It’s just every day that made it too hard.”

I asked JR what diagnosis brought him here.

“Well, in 2001, I was diagnosed  with type 2 diabetes. It progressively got worse and by 2011, I couldn’t drive anymore because I didn’t have feeling in my feet. I couldn’t feel the gas or brake petal. I could step on a tack or staple and not feel a thing. I couldn’t feel items on the outside of my feet, but inside, my feet were very painful.”

“That sounds awful,” I said.

“Yes, and it partly led to my retirement, but the hardest part was I’ve always been an outdoor person. My feet problems made camping or driving ATV’s hard. I finally bought a Jazzie to save my feet and to use it to motorize when I’m outdoors. I also have a manual wheelchair for when I would go out to Village Inn or do other activities. I like to use that chair when I’m indoors.”

“Aren’t wheelchairs great,” I added. “My husband needs an outdoor and indoor wheelchair too.”

JR nodded in agreement.“They allow me some independence and I knew this was coming,” he said as he glanced down at his gray sock which covered his shortened leg. Later he told me the compression sock which covers the ace wrap around the newly cut leg is called a “shrinker.” It decreases swelling, which is critical for the proper fitting and use of an artificial leg.

“What happened,” I asked.

“I got an ulcer in my ankle. The open sore failed to heal even after weeks of being on a heavy duty antibiotic through an IV pic line. On week four of fighting the infection I had surgery to clean it out. Week eight they did an MRI which showed the infection had gone into the bone. On week nine my skin actually peeled when they unwrapped my leg. My toe was black. The infection had moved down into my foot and toes. That’s when the decision was made to do an amputation,” he said in a matter-of-fact way.

“I’m sorry,” I said. “I’ve heard it’s harder to heal when you have diabetes.”

“Yes it is. I fought the infection for about three months. The doctor called it gangrene and recommended amputation.”

September 1st they did the first cut on his right leg and he was scheduled for a second surgery six days later. On that sixth day he was feeling pretty good and thought he could get to the bathroom on his own. Unfortunately, he fell and broke his left hip. Instead of surgery on the amputated leg that day he had a titanium rod placed in the left femur, which was secured with two screws into the broken hip. The following day he had his second surgery on the right leg. In an eight day period of time he had three surgeries. After twenty-one days of hospitalization he was taken to the care center on a stretcher for rehab.

“The first week was torture. Not because of the amputation, but because of the broken hip. I worked hard and have done more than they’ve asked me to do. The hip has been the most painful.”

jrI first met JR on Halloween. My therapist said, “You have to meet JR, he’s a great example of embracing life challenges.” She wheeled JR into the room. I had to smile as she introduced us; he was dressed like a pirate, complete with a wooden branch for a peg leg.

I told him he looked great and we both laughed. I thought his jolly disposition along with his long white beard and hair made him also a good candidate for Santa Claus. He later told me about the trick-or-treaters who came that evening. One boy asked him what happened to his leg. His father seemed embarrassed and hurried him on to the next bag of treats. Another boy also asked what happened, but this time JR was given the time to respond.

“I was in a sword fight and lost my leg. Boy—did that boy’s eyes get wide,” JR said with a mischievous smile. “I imagine his dad had some explaining to do later,” he chuckled.

JR and I discussed how this incident reminded me of many conversations we’ve had through the years where children ask questions about Mark being in a wheelchair or why he talks the way he does. Some just bluntly ask, “What happened to you?” Or simply state, “You talk funny.”

“Some parents are so mortified they turn away and rush their child away from us. This actually makes us feel more awkward. Parents don’t need to be embarrassed. We understand Mark looks and sounds different than most,” I said.

JR agreed and added, “I’m not ashamed of my missing leg. I didn’t do anything wrong. It is what it is.”

JR shared his goals and timeline with me and said he should have his artificial leg on November 28th. He also has some work to do at home, especially modifying the shower because he won’t be able to stand to shower. He’s working on those arrangements as well as his rehabilitation.

“I want to be independent and I can be with modifications. I know there will be some limitations, but I can work around those. I came in on a stretcher, but I’ll walk out of here.” Then he added, “Hopefully before Christmas.”

Thank you, JR, for sharing your story. I really appreciate your example of embracing life challenges. Best wishes to you and your family as you make the transition home. It’s been my pleasure getting to know you and I won’t forget your example along with others at Rocky Mountain Care who have made my shoulder rehabilitation more pleasant.

What Makes a Caregiver

Just as there are multiple health problems, there is a diversity of caregivers. For the last 12 1/2 years of Arlette’s life she lived with her son, Klint, and his wife, Rosanne. When I asked my sister, Rosanne, if she’d like to be a guest author on Uniting Caregivers, she said, “I don’t feel like I’ve been a caregiver.” I was shocked. I’ve heard those same words from others and it’s like fingernails running down a chalkboard to me. If you care and you give to another, you are a caregiver!

parents_and_childrenWe all have varying responsibilities as caregivers, but just because yours are different than mine doesn’t mean you’re not a caregiver.  A parent taking care of children is a caregiver. Likewise, a child overseeing their elderly, or sick parent is a caregiver. A friend taking dinner or driving you to an appointment when you can’t do it for yourself is a caregiver. Fortunately, I see caregivers everywhere.

Rosanne and Klint both work full time running a family music business. When Arlette was no longer safe to live in her own home, they invited her to live with them. They fixed a room and bathroom for her. It was a great benefit not only for Arlette, but for Rosanne and Klint along with their children, two of which were teenagers at the time. It was wonderful to watch this family grow in love and service as they cared for and watched over Arlette for many years. To make their caregiving journey work they shared the responsibility. Arlette had professional aides who came to their home to assist her with exercises, meals and bathing, but there was so much more that went into her care.

What are some responsibilities of a caregiver?

  1. Arrange schedules and doctor appointments
  2. Provide transportation
  3. Manage insurance issues
  4. Legal assistance
  5. Financial management to assist with paying bills or providing advise
  6. Housekeeping or assistance with household duties and/or yard keeping
  7. Managing medication
  8. Full or partial assistance in transferring from bed into wheelchair or from wheelchair to car etc.
  9. Prepare meals and may need to assist with eating
  10. Assistance with dressing, bathing and other personal care

A caregiver may have all these responsibilities or just one or two of them. Some may serve as home health aide or assist and manage the professional aides. Some may be companions, while others have to take over the duties their loved one used to do, at the same time meeting the needs of other family members.

Whatever your responsibilities are, as a caregiver, you make a huge difference in another person’s life. Your influence affects how your loved one deals with their illness or limitations. Your encouragement and support greatly impacts another life. Hopefully, appreciation is openly expressed for any and all your efforts. Gratitude is often the only pay and may be sufficient if it’s given often. I’m thankful for all the caregivers in my life and grateful for their example.

What caregiving responsibilities did I miss and/or what do you find most rewarding about your journey?