Katie Laughs and Katie Smiles: Katie’s Story, Part Fifteen
Posted: December 25, 2014 Filed under: Caregiving--Positives and Negatives, Katie's Story | Tags: caregiving-book, Christmas-carols, Katie, laughs-and-smiles Leave a commentJudene and I went to visit Katie last Friday. Judene took some silly Christmas headgear 
for us all to wear while we sang Christmas carols.
Katie sang, Katie laughed, Katie smiled.
Welcome Home, Dear Friend
Bumps in the Transition Road: Katie’s Story, Part Fourteen
Posted: December 19, 2014 Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Katie's Story | Tags: alert-and-oriented, bumpy-road, caregiving-book, home-health-agency, Hoyer-lift, Katie, mantra, transition, wheelchair Leave a comment
Expect bumps. Good philosophy.
- “There are always bumps in the transition road–we expect them,” the Provider said. “Give this about a week and Gloria, Sam and Katie will start to get into a routine.”
- First bump: In short, the home health agency did not show up on Tuesday, and will be unable to come until Sunday. This occurred because the nursing home did not send the orders until the day of Katie’s release; orders were incomplete; the staff was uncooperative in rectifying the problem.
- Second bump: The environmental modifications could not be provided until after Katie’s discharge. Katie’s living area is carpeted, which makes it very difficult to move the Hoyer lift and wheel chair. In addition, since Katie is dead weight in the bed, it takes two people to move and transfer Katie. The laminate floor will not be installed until after the New Year.
- Third bump: Sam is having difficulty visualizing that Gloria will be able to handle the heavy aspects of Katie’s care without assist. He points out that this has always been his biggest concern. The success of the plan rests on the caregiver’s ability to work independently. In the meantime, Sam will have to pitch in to help Gloria, or make arrangements to have the neighbors help.
Sam is embroiled in the middle of a very difficult situation. It’s hard for him to see the positives.
- First positive: The Provider is monitoring Gloria’s ability to handle Katie. They will make adjustments where needed and are confident that it will all work out.
- Second positive: The Provider reports—“ I cannot believe how alert and oriented Katie is—it blows me away. She is reminding Sam to do things! Sam went up to get some tape and came down and said, ‘I can’t remember what I went upstairs for.’ Katie replied, ‘Honey you went for tape.’ After Sam leaves the room, Katie says to me, ‘I think Sam needs to do some of my brain teaser exercises to stimulate his brain.’ Gloria, Katie and I cracked up. She laughs, she smiles—she is funny and right on point.”
- Third positive: Katie’s new mantra–
IT IS WHAT IT IS
Katie Comes Home: Katie’s Story, Part Thirteen
Posted: December 16, 2014 Filed under: Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships, Katie's Story | Tags: caregiving-book, goal-setting, hospital-bed, Hoyer-lift, Katie, Katie's-team, learning-curve, medications, saying-goodbye, welcoming-committee Leave a comment
The EMS transport was scheduled to arrive on Monday, December 15th at 2:00, which was just about the time I got there. Entering her room (thankfully for the last time) I encountered Katie; her husband, Sam; their son; the Provider RN; and the Caregiver, Gloria. The room was emptied of Katie’s belongings. A nursing home nurse was reviewing medications with Sam and finalizing paperwork. Other staff kept popping in the room to say goodbye and give Katie a hug. They all said they would miss her, but were glad she was going home. Typically, we had hurried up to wait—as the transport showed up at 3:00.
Once Katie was loaded in, it was a 15 minute drive to her home. She was greeted by a welcoming committee—ladies from next door and across the street. The neighborhood group goes back for decades. Everyone was thrilled to see Katie come home.
Equipment that was expected Friday wasn’t delivered until Monday morning, so Katie’s room was in a minor state of disarray. Katie wanted to get into her new electric hospital bed, which required Sam and Gloria to use the new electric Hoyer lift. Sam was eager to demonstrate how to use the lift; Gloria was eager to step right it and do her job; and together the first transfer was a success.
The Provider arrived and began to help Sam with setting up medications; she and the Provider RN will be visiting frequently, especially early on. Tomorrow, the home health company services are to begin. Home modifications (flooring, wheelchair accessible shower, and ramps) will be started soon. So—there will be a steady stream of people coming and going for the foreseeable future. 
There’s a big learning curve and a significant level of stress to be expected. But with this terrific care plan in place and with the support of everyone on KATIE’S TEAM, I am encouraged that everything will work out—eventually functioning like a well-oiled machine.
Most importantly, Katie is happier than I have seen her for the past two years, and she is setting goals. “I hope to be walking by summer,” she said. WOAH Lady! One step at a time. But it’s great because—
KATIE IS SETTING GOALS!
Katie is Emerging: Katie’s Story, Part Twelve
Posted: December 11, 2014 Filed under: Assuming Caregiving Responsibilities, Katie's Story | Tags: care-plan, caregiving-book, commitment, home-health-agency, house-call, Katie, support, team, therapy, treatment, wheelchair-van, wound-care Leave a commentWell, Katie may have had the date wrong—but the concept was right. KATIE IS GOING HOME on Monday, December 15th.
The Provider met with the nursing home staff this week to compile a specific and detailed plan for Katie’s care. I was invited to attend the meeting, and I asked Judene to accompany me because she always provides good perspective and moral support.
When Judene and I arrived, it was immediately evident that KATIE IS EMERGING!
Katie was excited!
When the Provider began checking down the list–
- The medical bed, air mattress and Hoyer lift will be delivered Friday.
- The Home Health Agency will start on Tuesday. They will provide a nurse and therapists.
- Your caregiver, “Gloria” is very anxious to get started. She is moving in on Friday.
Katie began slapping her leg. “This is how I clap,” she said. And we all clapped with her.
We talked about meals: Gloria cooks very healthy food. What do you like for breakfast?
We talked about treatment and therapy: Gloria can tend to your wounds. She can help you with your stretching exercises.
We talked about visitors: Gloria will be glad to have your church group over to sing hymns.
Everyone is doing what they can to facilitate the transition home and to make the plan work.
- Katie is required to see her family doctor within 5 days—he has offered to make a house call.
- Sam purchased a wheelchair van at auction. It will provide her with more opportunities–many, many more.
- Family and friends have made commitments of support.
Sam and Katie’s home will be hectic for a while. But I believe the plan will succeed because…
We are on Katie’s TEAM!
Waiting on Pins and Needles: Katie’s Story, Part Eleven
Posted: December 8, 2014 Filed under: Katie's Story | Tags: caregiving-book, emotion, Katie, lack-of-emotion, pain, waiting 2 Comments
Waiting on Pins and Needles
Each time Judene and I visit, we try to be optimistic, but too often we leave feeling discouraged, generally for one of three reasons: Will Katie be unresponsive? Will she be crying out in pain? Will she show any discernible emotion? All are difficult to understand—mysteries buried deep in Katie’s brain.
The backward steps are alarming and disheartening. We remind each other to remember: “One, two, cha-cha-cha!”
Indeed, our visit last week was really good. Katie was alert. She no longer has to wear her braces during the day. She did not cry out at all, and for the two brief moments that she did experience some pain, she said, “Ow, ow, ow,” QUIETLY. 
She also made an emotional statement (albeit unemotionally): 
“I’m going home on the 12th no matter what.”
Three steps forward for sure!
Not in My Wildest Dreams: Katie’s Story, Part Ten
Posted: December 7, 2014 Filed under: Assuming Caregiving Responsibilities, Katie's Story | Tags: Area Agency on Aging, caregiving-book, environmental modifications, fulltime caregiver, Gloria, handicapped-accessible, handicapped-equipment, in-home caregiving, Katie, Public Partnership, services-my-way, total-care, transportation Leave a commentFrom the onset, I had a specific idea of the care plan that would be necessary for Katie to be cared for at home. But, I was skeptical that such a plan would be approved.
Even in my wildest dreams, I did not dare to imagine…
The plan was based on two major factors:
- The opportunity to use an existing handicapped-accessible living area:
First of all, Katie has an ideal living situation in her home. A number of years ago, Sam’s mother chose to utilize her finances to add a handicapped-accessible living area onto Sam and Katie’s house. They built a large living area with a handicapped bathroom that extended off of the existing first-floor family room so they could provide the assistance needed. - The ability to get approval for consistent 24/7 care:
Secondly, Katie requires total care, which Sam would not be able to handle alone. He works part time and needs the freedom to come and go without having to constantly make arrangements. Although Sam and Katie have two sons, only one is local, and both have the responsibility of young children. Katie needs one consistent fulltime caregiver, in addition to Sam, living in the home.
At the October 23rd meeting, Katie was relatively alert and able to participate in a limited way. Sam informed the provider that all narcotic medication had been discontinued. The provider assured Sam that they would be able to care for Katie in the home environment. More importantly, another meeting was scheduled for the following week with all involved parties: Katie and Sam, the Area Agency on Aging care manager, the nursing home social worker, the provider, and the prospective caregiver.
At this meeting, Judene and I were also in attendance to provide support for Katie and Sam. When we first arrived, Katie greeted us with a vivacious, “Hi!” We were delighted.
When the Aging care manager outlined the specifics of the Waiver Program’s, “Services My Way” plan, I was floored. It provided more than I had dreamed of in my wildest imagination, such as:
- A 24/7 Service Provider
- Equipment: electric Hoyer lift, customized wheelchair, shower wheelchair / commode chair combo;
- Environmental modifications: ramps, laminate flooring, wheel-in shower modification; and
- Transportation: two roundtrip EMS transportation services monthly for medical appointments.
And if this was not enough to make the day, the provider brought the caregiver they had in mind to look after Katie. “Gloria” has experience working in a family unit. She knows how to use a Hoyer lift. She’s described as being a homebody, having spirit, and being reserved yet warm. We were all most-impressed when Gloria reassured Katie with a gentle touch and calmed her with an uplifting hymn.
One more meeting was scheduled to complete the Public Partnership paperwork for final approval of the plan. The paperwork has now been submitted. The target date for Katie to come home is December 15th. And again, we wait…
Crying Out is Katie’s Release: Katie’s Story, Part Nine
Posted: December 4, 2014 Filed under: Katie's Story | Tags: caregiving-book, crying-out, Katie, level-of-care, miracle, pain, tendon-release Leave a commentKatie has a lot of people praying for her. I, for one, would certainly welcome a miracle. But, when I urged Sam to have the assessments for in-home services, my objective was to see if Katie would qualify for assistance based on her level-of-care needs as they were in the present.
The tendon release treatment put a big wrinkle in this idea. Katie was now either “out of it” or crying out in “pain.” I was worried that her current condition represented a new baseline and that having her living at home would be unbearable for Sam.
At this time, medications are being reduced and the casts have been replaced by braces. Only time will tell if Katie makes progress with this course of treatment.
Sam was finally able to get an answer from Katie explaining why she cries out. “It’s a release,” she said. Now, knowing Katie, that just makes sense. Since Katie has always been a really hyperactive lady, being increasingly “locked up” within herself must be torturous beyond imagination.
Sam began talking to me about asking the provider to reassess the situation to see if the care plan was feasible in Katie’s more challenging condition. Frankly, my initial reaction was that the objective of the care plan was to provide both Katie and Sam with an improved quality of life, and I questioned whether bringing Katie home in this state would be any sort of improvement for Sam.
But after further thought, I recognized that this is really not my judgment to make. If Sam wants Katie to come home, maybe the change of environment will be an asset to her recovery. Sam has become increasingly frustrated with Katie’s care at the nursing home. He wanted to move ahead with the plan. A meeting was scheduled with the provider agency for October 23rd.
What to Do about Mama? 