Caring for a Loved One with Parkinson’s Disease

In health care settings, the body gets medical attention, but the mind and soul matter, too. Older adults in medical care face a battery of health questions, but too often the most consequential one goes unasked and unanswered: What does a good day look like for you today?Medicare requires people to receive a spiritual assessment within their first five days of admission into hospice. Many states allow a nurse to conduct the initial spiritual assessment, but I think it helps both the person and the health care provider for the assessment to be done with someone who has theological training. Many have been certified in clinical pastoral education, or CPE. Nurses can get so focused on the technical to-do lists of medical work  the measurements, the tests, the drug regimens that it can be hard to make time for the issues that matter most to the living human, namely, their happiness, peace and contentment.  As a spiritual care provider with 17 years in senior care facilities, and as a chaplain in the Army National Guard and Air Force National Guard, I have counseled hundreds of people in the final days of their lives.  For older adults and their families, one of the most valuable resources is also little-known a Medicare option that provides spiritual counseling for people in hospice. Longing for ConversationToo often older adults in care are being talked at, not listened to. Many times, I've found that people in the last chapter of life want to discuss their path to the end more than their medical professionals and, especially, more than their loved ones.  It often helps to have that discussion with a professional who is trained to hear them, and, if requested, to comfort and advise them.  RecommendedOpinion: Why I Went on Hospice Even Though I'm Not Dying | Personal PerspectivesThe code of ethics for the leading chaplain and spiritual care associations all prohibit proselytizing. A spiritual care provider should be able to work with someone on their own terms, no matter their beliefs. The United States may be turning more secular, but the fact remains that older adults are the most faith-affiliated of any demographic age group.This initial spiritual meeting is likely to be about the basics: Is the person religious? What is their support system? Will a certain faith-based ritual bring meaning or comfort? Do they have a preferred faith leader? Or is a secular discussion a better fit for the person's beliefs? 

One Sunday morning in early August, Irene woke up with a badly swollen knee. She thought about waiting until Monday to call her Lifespark Nurse Practitioner but was afraid that bacteria from an infected tooth had migrated to her artificial knee joint, something her orthopedic surgeon had warned her about. If left untreated, an infected joint could require additional surgeries, which is why she had taken prophylactic antibiotics before and after a recent dental procedure.The last thing Irene, 74, wanted was another surgery, but based on previous emergency room visits, she dreaded the thought of going to the ER. Youre sitting for hours next to people who are sick with the flu or COVID, when youre already not feeling well yourself, she said. The doctors are regular GPs [general practitioners] so theyd probably just run some tests and send me home with antibiotics, which Im already taking. She was also concerned about the $100 co-pay, adding that she lives in low-income housing and has limited financial resources.Instead, Irene called Urgent Response Services, Lifesparks 24-hour nurse triage line.Convenient, efficient, and trustedAs a member of Lifespark COMPLETE (LSC), Irene qualified for Urgent Response Services which provides acute-level care for members in their homes. Within minutes, Leah Castle, RN, BSN, Mobile Urgent Responder, was on her way, getting briefed by the triage nurse on Irenes concerns.Once at Irenes home, Leah logged onto the secure portal to access key client information, including Irenes health history, medications, allergies, support system, financial considerations, contingency plans, and goals of care. Having this level of detail at our fingertips helps us make more accurate, more efficient assessments, she said. It also gives us a more complete picture of the member, so we can offer recommendations that align with their goals and lifestyle.After taking Irenes vitals, she drew some blood, took a photo of the worrisome knee, and talked through her findings with the on-call provider. They were both confident that it wasnt a bacterial infection but would wait for the lab results for confirmation. Leah sent a note to Irenes COMPLETE team to schedule a follow-up for the next week. In the meantime, Irene was to continue the antibiotics, take a Tylenol every six hours, ice her knee, and keep the leg elevated as much as possible.Leah dropped off the blood samples at the hospital lab for processing, and in less than two hours, the on-call physician had the results. Leah called Irene to let her know that the labs were negative for systemic infection and that her inflammatory markers were within normal range.Irene was relieved. This was so much better than going to the ER, she said.Rule-outs and rule-insIn Leahs experience, older adults often go to the ER to make sure theres nothing seriously wrong. In fact, studies show that roughly 32% of hospital ER visits are non-urgent and unnecessary. As a Mobile Urgent Responder, shes able to rule out those non-emergencies, efficiently and effectively, from the persons home.That was the case with Irene: shes had both knees replaced and was very concerned that shed need more surgery, Leah said. We were able to put her at ease and assure her that we would continue to monitor and manage her symptoms from home. If there is something to be concerned about, Leah added, the Mobile Urgent Response team is able rule in the need for emergency care.Building on career experienceHaving the confidence to make quick, accurate assessments and communicate them to Lifesparks medical experts comes from her diverse career background. One of Leahs first nursing jobs was on a cardiac step-down unit, a fast-paced, intense environment where the nurses were constantly working with different physicians and therapists. I learned how to quickly build trusting relationships with the providers and also with families during some of the darkest moments of their lives, she said.Leah said she grew professionally in that environment, gaining skills and knowledge that prepared her for her next job, at a long-term acute care hospital. The individuals she cared for had complex diagnoses and illnesses, such as extensive wounds, traumatic brain injury, chronic kidney disease, and respiratory failure. Patients were here for two to six months or more, many of them on ventilators and feeding tubes, so I got to know their families and learned how to support them, too, she said.In 2017, Leah joined Lifespark Community Home Care as their first on-call nurse. Coming into the Home Care setting with my background was powerful, because I knew what my clients had just walked out of, whether that was the hospital or rehab, and now I could help them stay healthy at home, she said.Seven years later, she was recruited for Lifesparks Mobile Urgent Response team. I feel like each step in my career has prepared me for the next one, and now, as a Mobile Urgent Responder, I can be the eyes and ears of our providers in the home, she said. I can also bring care and compassion and empathy to our members, so they feel confident in the care were providing.Benefits of early interventionThe Mobile Urgent Response team has been most successful when members call the triage line before their symptoms progress to a critical level. The team has been able to treat early symptoms of congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) in the home, often with a short-term medication adjustment. However, if a CHF or COPD exacerbation isnt treated, the client would likely need to be hospitalized for IV therapy and increased respiratory support. Recently, Leah collaborated with the on-call provider to diagnose a painful ear infection that had developed quickly. The physician faxed a prescription for antibiotics to the clients pharmacy which they were able to pick up and start taking that same day.Its really fulfilling and rewarding to be able to offer this service to our members and their families who want to be supportive but cant always be there in person, Leah said. Theyre in good hands with Lifespark.To learn how Lifespark helps seniors stay healthy at home, visit Lifespark.com or call 952-345-8770.  

Seniors have earned their safety net of Social Security and Medicare, but to truly thrive they need to move beyond the well-planned life to add something unexpected: personal risk.  Its one of the oddest twists of modern society Americans spend most of their lives being encouraged to work hard to do difficult things. As soon as we hit a certain age, though, its all about easing up and backing off. Grandma, take a break! Give it a rest, Grandpa! You dont want to chance a fall there! The problem is, weve become so preoccupied with surplus safety at all times for seniors that we have stripped away too many of the surprises and unexpected twists that make life worth living. Is it any wonder that seniors now are battling an epidemic of boredom, depression, and loneliness? Few people of any age find meaning and purpose in doing the same thing, at the same time, in the same way, every day. We need to mix it up and try something new a physical challenge, a different setting, a new learned skill.  As a career nurse and chief executive of a complete senior health company, I know that the only risk-free environment is a coffin. No point rushing our way into there. One of the best solutions to bring risk to seniors is to borrow an idea from the younger generations. Seniors should go gaming.  No, grandparents may not want to take up Minecraft, Fortnite, or Call of Duty. (Though if they want to try it, by all means, go for it.)  Im also not a big fan of one traditional eldergame, namely, bingo, which is too much about luck and not enough about skill and performance mastery as a source of motivation. There is little in bingo that offers true risks or competition to benefit others.  The better games promote the physical and mental skills that can go unexercised as people grow older. For families and friends, an excellent plan is to tap into the data collected by Apple watches and Fitbit-style fitness trackers. How many steps a day can you record? How many days a week can you record steps that meet your goal? Instead of making it an individual competition, we see better gains and more fun overall when people are assigned to a team.  A team competition makes you responsible to others, not just yourself. Its human nature to push yourself harder when others are relying on you. Maybe the team is made up of family and loved ones. Maybe its friends and neighbors. The overall goal is to get everyone accountable and moving.   In our own health business, we have 1,000 seniors, aged 60s to 100 and up, who compete in Spark Performances, which include an annual TRY-athlon Tournament, a remote-control National Forklift Racing League, and The Grip Games. There also is the Spark Challenge, where community teams battle for the league championship using walkers, stationary bikes, and arm cranks. Every week the 32 teams in the league tune in to The Really Big Show, an ESPN-style Sports Center wrapup that features results and league standings. Established powerhouse teams are the Dragonflies, Cardinals, and River Rats. The competition is fueled by a $32,000 tournament purse. Of course, not everyone can do the more physically demanding tasks though a 95-year-old is one of our leading hallway runners but every team has a place for someone, including coaches, statisticians, and cheerleaders.  How is it safe to have great-grandmothers running down hallways in walkers? The truth is, its not completely safe. But thats the point. And its also really fun.  A few weeks ago, an 80+ woman was competing in the hallway run when she slipped, fell, and cut her knee. In the emergency room, the doctor asked her how the injury happened. I fell in a triathlon, she replied.  The doctor thought she was joking until the woman asked to be patched up as quickly as possible, so she could complete her remaining two events. She was extremely proud and definitely adamant she really, really did not want to let down her team.  What she saw was a chance to win. What our medical team saw was strength, purpose, and belonging. Whether in a senior community or in life, aging is a team sport. As our years go up, we depend more on others to reach our goals. Our team may include family, friends, medical professionals, or even a fellow hallway racer on a walker. Well do better together, if only we take that risk to challenge our minds and bodies with something new.  Joel Theisen, BSN, RN, is founder and chief executive of Lifespark, a Minnesota- based complete senior health company. Follow him on Twitter: @Lifespark_CEO.