Every 40 seconds, someone is thrust without any warning into the unchartered territory of caring for a loved one who has just experienced a stroke – the daunting, vulnerable feeling of what do I do now? What is happening? In the moments that follow, proactive guidance and trusted relationships mean everything.
Tim suffered a stroke that left him minimally responsive and on a ventilator. His family wasn’t sure if he’d survive. Tim spent four weeks in the hospital on IVs with a gastrostomy (g-tube) for administration of all food and medications. He had aphasia (impairment of language), apraxia (motor planning disorder), and dysphagia (difficulty swallowing foods and liquids). He was unable to walk or eat, and as a result of his aphasia, he had limited ability to understand or use spoken language. The days ahead would focus on rehabilitating him to relearn these skills.
What his family didn’t expect was that in just four months, Tim would be walking with a walker and drinking his favorite latte again – surpassing everyone’s expectations. Typical stroke recovery improvements are often seen within the first few months if the stroke isn’t severe and recovery treatments have begun immediately. Recovery is unique to each person and can take upwards of 12-18 months post-stroke, even years, to start to see improvement. In Tim’s case, his stroke was so severe that his recovery has been remarkable.
Caring for Loved One After A Stroke – Transitioning Home
While Tim had never had a stroke before, he and his wife Shirley had faced healthcare challenges before when Tim had surgery to implant a left ventricular assist device (LVAD). She found the guidance received from her Lifesprk Life Care Manager (LCM) invaluable. So when this unexpected crisis arose, Shirley knew right where to turn for proactive guidance.
“Vicki, Tim has had a massive stroke, we need your help.” These were the words Vicki Condon, RN, Lifesprk Life Care Manager (LCM) heard when Shirley contacted her a few nights after the stroke.
Immediately, Vicki began the behind the scenes work of developing an integrated whole person plan for Tim and Shirley for when Tim was ready to be discharged. Vicki worked with Lifesprk’s Medicare-certified Home Health team to identify resources to help transition Tim home. A key aspect of the plan was to engage nurses and home health aides to provide extended hours of care to help Shirley and Tim with the complexity of his care in addition to the ongoing guidance and coordination from Vicki. Lifesprk’s Tina Belshner, LPN, would be working in their home Monday through Friday 8 a.m. to 6 p.m. on a private-pay basis with additional support from weekend nurses who would fill the gaps. The Lifesprk team knew that in the initial weeks, covering every shift would be critical to making sure rehab routines are followed and medication is taken appropriately. Home health aides were hired to cover the nighttime hours from 8 p.m. until 8 a.m.
The support also needed to focus on helping the family or caregiver, in this case Shirley, understand what is happening, how to care for her husband, and manage her own stress as she works through this new reality. Studies show that caregivers of stroke survivors often become the ‘second patient in the family’– emotional support is as important as the physical help needed to recover from stroke. The goal: build Tim’s recovery while educating and supporting the family to begin to reduce the need for care as Tim and Shirley became more independent in their daily lives.
Prior to Tim’s discharge, Vicki met Shirley at the hospital to gather all the information, discuss the prognosis, coordinate plans for going home, and make sure all supplies were on hand. “Gathering all the information is overwhelming and I wanted to make sure I didn’t miss anything,” said Shirley. “I don’t know how families do this part without someone like Vicki to navigate them through the process.”
“This is a stressful and scary time for families,” said Vicki. “It’s often the little details that go overlooked because you are so overwhelmed with what’s happening and what the future holds as you begin to transition home. It’s great to go home but sometimes it’s terrifying when families realize they are on their own to care for their loved ones, especially in very complex cases like those who’ve experienced a stroke.”
The first few hours at home were critical. While Tina was caring for Tim and explaining to Shirley how to care for Tim at home, Vicki was coordinating every detail. “I took the discharge orders and medication lists and created a chart for Shirley so she could clearly note when things needed to be given, how much and which ones,” said Vicki. “But something was wrong, some of the medications were missing and a few of the supplies were never delivered. Shirley would never have known this, and if Tim didn’t get these things he might have ended up back in the hospital that night.” Vicki spent nearly five hours at their home the first day reconciling the missing pieces and making sure Shirley felt confident about what would be happening. “I followed up with them the next day again to make sure things continued to run smoothly,” said Vicki.
Over the next few weeks Tina’s regular visits provided a calming presence for both Tim and Shirley who were adapting to a new normal of life where Tim had to relearn everything – walking, talking and eating. They worked together as a team to manage Tim’s progress and Tina supported the education and training that Shirley had received when Tim was at the rehabilitation center for five weeks after his discharge from the hospital.
Progress Begins – Keys to Success
One of the biggest reasons people end up back in the hospital or don’t recover quickly after a stroke is because of their inability to follow through with in-patient rehabilitation or rehab exercises at home. Getting to appointments is also very difficult for some families, especially seniors, who may have older spouses who aren’t able to help the stroke survivor travel or get in and out of the car. Tina was there every step of the way to accompany Tim and Shirley to his outpatient visits at Courage Kenny where he received therapy and then reinforced his exercises at home with a continuous routine. Tim responded well to therapy and eventually he was able to use his walker with some assistance. “I joined them at one of his outpatient therapy sessions and watched in awe as Tim carefully and slowly went up and down the stairs,” said Vicki. “It was very impressive to see his progress.”
After the stroke Tim’s speech and comprehension were drastically affected, common among stroke survivors. Vicki shared that initially he was only able to offer one-word answers to questions but they didn’t always correspond with the question asked. “For example we’d ask him what he’d want for breakfast and he’d answer ‘tractor,’” said Vicki. As the speech therapist continued to work with Tim, those misunderstood answers turned into sentences. “Now we are able to hold conversations that Tim can participate in,” added Vicki. Shirley is a retired speech/language pathologist, because of her training, she was in a unique position to help Tim understand the challenges of the language deficit and utilize intervention strategies through his days in the rehabilitation center and continuing once home.
As for the eating, in just four months, after intensive speech therapy at Courage Kenny (four sessions every week), Tim’s g-tube has been removed and he’s graduated from a diet of only liquids. “He can pretty much eat everything,” said Vicki. “This is remarkable and a milestone for Tim.”
Tim started his journey having 24/hour care with nurses and home health aides overnight. “In just a few months, the team was able to reduce his care to just three days a week for four hours,” explained Vicki. “His need for care and the associated costs have significantly decreased, especially the more Shirley gained confidence in caring for him and his rehabilitation progressed.”
Whole Person Difference
Lifesprk’s unique model of whole person care using the Life Care Management approach was a major contributor to Tim’s success as it can be for many stroke survivors. The immediate professional care coordination and oversight by a nurse at home coupled with educating and guiding family members on how to care for their loved one is critical. Using Lifesprk’s Discovery process, Vicki was able to tap into Tim’s drive to more than recover and Shirley’s determination to help Tim live the healthiest, most independent life possible. Vicki as Tim & Shirley’s LCM helped engineer seamless care across settings – hospital to home and out-patient rehabilitation at Courage Kenny. Having a Life Care Manager helped connect all the health providers on his team by developing one cohesive plan, alleviating stress with professional guidance, strengthening therapy routines at home, providing positive reinforcement, focusing on following through on discharge plans, managing several medications and their strict schedules, and keeping a round-the-clock eye on Tim for any red flags that could send him back to the hospital – things home health aides or family caregivers wouldn’t necessarily know to look for. The result: a reduction in the need for care overtime and empowering both Tim and Shirley to be proactive rather than reactive in a highly stressful situation.
For Tim’s case, Vicki gives tremendous credit to Shirley who had a huge impact on his outcome. “She was a fierce advocate of his health and progress,” shared Vicki. “She became the driving force behind having the Lifesprk team there and precisely absorbing all of the information we gave her. She expected a high caliber of care and Tina delivered. Having Lifesprk as part of the team was really about building Shirley’s confidence so that as we reduced care she was fully in control and was she ready.” Shirley said, “I was so grateful for all the support that both Vicki and Tina provided, they set Tim up for success as they reduced the need for round-the-clock care.”
Care coordination for stroke survivors is very stressful for families who have never been faced with a health crisis. Shirley’s advice to other families: Get the proactive support and guidance from a professional like a Life Care Manager in the home, and never waver from your loved one’s goals – success post-stroke is about you and your loved one and making sure the plan of care focuses on what matters most to you. And when you are ready, celebrate milestones over a latte.
Share your experience – how did you navigate care after a loved one had a stroke?