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By: By Babatope Olusina, PT, DPT and Olaide Oluwole-Sangoseni, PhD, DPT, MSc.
Osteoarthritis is a degenerative joint disorder that affects the articular cartilage, underlying bone, and surrounding soft tissues. It is the most common form of joint disease in the United States (US), with an estimated prevalence of 27 million people,1 with an occurrence of about 10% in men and 13% in women, over the age of 60 years. 2 Hip osteoarthritis accounts for about 70% of total hip arthroplasties (THA) that are performed in the US due to severe pain, which limits the individual’s functional mobility and negatively affects his/her activities of daily living (ADLs), eventually limiting his/her participation in work and leisure activities. 3 Other indications for THA include but are not limited to trauma and osteonecrosis of the femoral head.4
THA is the surgical replacement of the natural hip joint with a prosthesis. 3 The first THA procedure was completed in the US in 1969 and as the procedure has grown in incidence, the technique has evolved and its efficacy has improved. 2,4 A 2010 prevalence study estimated 2.34% of individuals over the age of SO years in the United States have had THA, corresponding to 2.5 million people (1.4 million women). 4 A detailed breakdown of their study revealed a prevalence of 0.58% at age SO years, increasing to 1.49% at sixty years, 3.25% at seventy years, 5.26% at eighty years, and 5.87% at ninety years of age.4 The original or more popular technique is the posterior or posterolateral approach, with its associated precautions (no hip flexion above 90 degrees, no adduction beyond the midline, and no internal rotation of the surgical hip joint).
In the 1980s, an anterior approach was developed and gained popularity because of improved early outcomes in terms of pain and early functional recovery. 5 Hip hemiarthroplasty is the surgical removal of one of the components of the hip joint, most often the femoral head. Although it is less invasive, the Physical Therapy assessment and management will follow a similar path as for a THA.
Home health physical therapists (HHPT) are part of the multidisciplinary team-approach called upon to manage these patients upon their return home. Orthopedic surgeons seek the involvement of physical therapists (PT), as movement specialists, to facilitate the recovery and rehabilitation of THA patients to maximize their return to full function and participation in the activity. In consultation with the orthopedic surgeons, our home health agency established protocols that can be customized to fit the individual patient’s desired outcomes and surgeon’s preferences. These protocols guide the first few weeks of in-home rehabilitation before the transition to outpatient physical therapy. As a HHPT with a weekly caseload of about 50 percent of total hip and total knee arthroplasty patients, I recognize that no two patients’ status post-THA is the same.
The Medicare home health Conditions of Participation (CoP) require that a comprehensive assessment of each patient be performed by the admitting clinician to start the episode of care. This assessment includes the patient’s past medical history (PMH); a complete review of the patient’s medications, including any changes in dosage and patient’s response; and the integumentary assessment, all of which go into the process of formulating the patient’s plan of care.
Because most home health patients have multiple diagnoses, the evaluating PT incorporates the patient’s past medical/surgical history and the patient’s prior level of function into his/her physical therapy plan of interventions. A detailed assessment of the patient’s home is an essential aspect of the initial visit, as safety hazard/fall risks can be identified, and safety education and recommendations can be immediately communicated to the patient and their caregivers. The purpose of this case report is to highlight the physical therapy management of a THA in the home health setting with a focus on adapting exercise program based on pain and muscle fitness indices.
The patient is an 81-year-old female, retired nurse admitted to HHPT following right THA revision with weight-bearing as tolerated precautions. She resides alone in a single level house in a 55+ Age-in-Place community. Before this surgery, she was fully independent with all of her functional mobility, occasionally using a standard straight cane for ambulation. She was independent with all activities of daily living (ADL)s and was active in her community, participating in group exercise sessions every week.
Her PMH was significant for multiple comorbidities: hypertension, atrial fibrillation, type 2 diabetes mellitus, anxiety, neuropathy, general osteoarthritis, vertigo, history of lumbar laminectomy and fusion in 2017, reflux disorder, cystocele with prolapse, and recent urinary tract infection. Initial THA was performed in 2002; she had a dislocation in 2017, which resulted in persistent hip joint pain afterward.
• Apixaban, PO, 2.5mg, 1 tab, twice daily
• Diltiazem, PO, 240mg, 1 tab daily
• Norvasc, PO, 5mg, 1 tab PRN, if diastolic is above 90mmHg
• Pepcid, PO, 10mg, 1 tab Q 8 hours
• Xanax, PO, 0.5mg, 1 tab daily
• Tramadol, PO, 50mg, 1 tab Q 6 hours
• Purelax PO, 17gram/dose, 1 tab twice daily
• Potassium Chloride, PO, 20mEq, 1 tab twice daily.
• Tylenol Extra strength, PO, 500mg, 2 tabs Q 8 hours
The patient stated her goal is to return to walking independently without the walker.
On examination, “Nanette”(a pseudonym) was alert and oriented to person, place, and time, and able to follow a multi-level command. She presented with hypomobility of the hip joint and weakness of the proximal muscles of the surgical lower extremity. She required contact guard/minimal assistance to assist her right lower extremity into the bed during bed mobility assessment. She required close stand-by-assistance of the therapist for sit to/from stand and bed to/from chair transfers due to She was dependent on a rolling walker for ambulation, with forward-flexed trunk posture over the device, using a 2-point antalgic gait pattern. The Timed Up and Go test (TUG) was performed, with the “Nanette” requiring 36 seconds to complete. 6 A time greater than 20 seconds is indicative that the patient is dependent on transfers and confirms homebound status. 6 The family had hired a private duty company to provide personal care assistance for several hours during the day to assist her in the first 3 weeks.
Because the initial home PT evaluation was on the same day as the nursing start of care (SOC) visit, PT evaluation referred to the nursing integumentary assessment. However, the physical therapist assessed the surgical incision on each subsequent visit, per our agency protocol, performing dressing changes when needed. The status of the wound was documented and presented at the interdisciplinary case conference with the registered nurse as required.
Per Medicare CoP, Nanette’s pain was evaluated on the initial examination and all subsequent visits, using a numeric pain rating scale (0-10) and verbal description. She rated her pain at level 5/10; her goal was to be pain-free by discharge. The expectation was a gradual decrease in the pain level, and any movement in the other direction and/or a new type of pain warrants additional evaluation.
Based on the hypomobility of the hip joint and weakness of the proximal muscles of the hip and pelvis, the International Classification of Functioning, Disability and Health (ICF) model diagnosis of M25.651 or 652 (stiffness of hip joint, not elsewhere classified) was made.
It was determined that Nanette would benefit from a skilled PT intervention frequency of 2 times per week for 4 weeks. Her exercise prescription consisted of joint mobilization, ROM and strengthening exercises, instruction in a home exercise program (HEP), functional mobility training (including bed mobility, transfer, and gait training), balance reeducation, equipment training, safety education, to progress to independence in all areas (Figure 1).
Since the pain was the chief complaint, it was used as one of the outcome measures. Pain medication was to be taken an hour before the PT session. The patient’s pain level was expected to decrease to level 1/10 at discharge.
The patient achieved independence with her bed mobility by the first session of week 2 (3rd visit), and independence with her sit to/from stand and chair to/from bed transfers by the end of the second week (4th visit). She demonstrated independence with her shower stall and tub transfers by the third week (6th visit) and independence with car transfer in the 4th week. The patient progressed to gait training with a standard cane by the 3rd week. She had progressed to independence with gait training on level and uneven surfaces, including on her inclined driveway and to her community mailbox, which is about 450 feet away from her front door, with a numeric pain score of 0/10. Her functional score improved from 36 seconds at initial evaluation to 12 seconds using the TUG test. This score correlates with independence in all transfers and activities of daily living. Her right hip muscle strength had improved to 3+/5, and the patient demonstrated independence with her HEP. Nanette had achieved pain-free status by the final visit.
This patient presented with several impairments that created limitations at the body function level as well as at the activity and participation level, 11,12 as laid out above with the ICF model.
The HHPT used his/her expertise to provide an individualized, person-centered, evidence-informed treatment in the management of this patient. The plan of care was based on the interdisciplinary protocol developed by the surgeon and the home health agency, to help achieve the goals she stated as important to her. Nanette was motivated to return to driving and get back to her normal social life with her friends in the 55+ Age-in-Place community where she resides. The patient had multiple episodes of elevated blood pressure that warranted the notification of her primary care physician (PCP). To err on the side of caution, our home health agency policy requires physician notification for any systolic above 150 and diastolic above 90mmHg. Although her PCP decided not to take any immediate action, her blood pressure was carefully assessed at the start of each visit and response monitored throughout the interaction. The patient had a medical history of anxiety, which sometimes played a role in her exercise response and feedback to the therapist, especially related to her RPE rating and response. She required frequent reassurance, and it was well managed afterward.
Further, consistent with her medical history, constant adjustments had to be made based on observations and findings at the beginning of each visit. Some of her exercises were modified, considering her history of back pain and surgery to avoid aggravating old symptoms. She received a reiteration of education regarding home safety and community re-entry in the last week of the HHPT visit.
Nanette was discharged from home health nursing services in her second week and was discharged to outpatient therapy upon completion of her 8th and final visit. She planned to start driving, first inside her community, once she was released from home health services. An anonymous satisfaction survey was mailed to her by the agency after discharge, and she expressed her satisfaction to the therapist on her last visit, showing how quickly she was progressed to independence with physical therapy. This case report demonstrates a successful progression of an individual with a posterior approach THA from acute care to return to community living through a three-week course of HH services.
About the Authors
Babatope Olusina, PT, DPT, Certificate of Advanced Competency in Home Health (APTA Home Health Section). He is a member of the APTA and Home Health section. Dr. Olusina now works for a home health agency in Richmond, VA, but previously owned and ran a Contract Therapy Staffing Company.
Dr. Olaide Oluwole-Sangoseni, PhD, DPT, MSc, GCS, is an associate professor of physical at Maryville University of St. Louis. She is a Board Certified Geriatric Specialist and a home health PT. Dr. Sangoseni is an advanced physical therapy clinical specialist degree in neuro-orthopedics from the University College London, England. She is an APTA credentialed clinical instructor. She can be reached at osangoseni@maryville.edu.
References
By: By Babatope Olusina, PT, DPT and Olaide Oluwole-Sangoseni, PhD, DPT, MSc.
Osteoarthritis (OA) is a degenerative joint disorder that affects the articulating bones, the articular cartilage, and surrounding soft tissues. Other causes of joint pain and degeneration include rheumatoid arthritis (RA), osteonecrosis, post-traumatic degenerative joint disease, and other pathologic conditions. While joint pain is usually the first sign that prompts the decision to seek medical attention1, other symptoms soon develop, including but not limited to joint hypomobility and muscle weakness. The progression of the disease results in the development of functional limitations such as difficulties with transfers, gait abnormality, stair management, and completing activities of daily living (ADLs), eventually having negative impacts on work, pleasure, and quality of life.
The knee joint is the largest weight-bearing joint in the body, and chronic knee pain has been listed as a “leading cause of musculoskeletal disability in the United States (US)”. 2 Total knee arthroplasty (TKA) is the surgical replacement of the natural knee joint with a prosthesis. It was the first performed in the US in 1968, and with ongoing advances in the technique and materials used, significant progress has been made in its effectiveness and success rate. A 2010 prevalence study of TKA by Kremers el al3 estimated 1.52% in the entire US population, and 4.55% in those over the age of 50 years, have had TKA. Prevalence is higher in women as compared with men, and it increases with age. Inacio et al4 projects that the number of TKAs performed in the US will increase by the year 2050 to a prevalence of 2.58%, amounting to 2,854 procedures per 100,000 US citizens. Partial knee replacement is often performed when the degenerative changes are confined to a particular compartment of the knee and mostly in the younger patient. The PT management is similar to that of a TKA, as described later in this study.
Physical therapy (PT) plays a major role in the initial conservative management of the knee pain before TKA, not only for pain management but also to improve function and decrease the limitations afflicted by the condition. Following a TKA, the home health physical therapist is part of the multidisciplinary team approach that manages the patient upon discharge home. Our Home Health Agency (HHA) has developed protocols to manage these patient populations effectively. Based on previously established protocol with the referring Orthopedic Surgeon, a registered nurse (RN) completed the initial visit, performing a comprehensive assessment of the patient, including the past medical history (PMH), assessment and care of the surgical incision, medication review/training, and the OASIS elements. This HHA also has established protocol with other Orthopedic Surgeons where the PT is the admitting clinician. The initial PT evaluation consists of a detailed musculoskeletal assessment of the patient,
a review of the patient’s PMH, gait and balance evaluation, and a home safety evaluation. A PT plan of intervention is formulated to address noted impairments and functional limitations, with the patient’s self-stated goal as the endpoint.
The purpose of this case report is to highlight the physical therapy management of TKA in the home health setting.
The patient is a 50-year-old female office worker referred to home PT and Nursing following a right TKA revision due to instability and eventual failure of hardware. She resides with her husband in a single-level house, with 8 entrance steps, and she was fully independent with all of her functional mobility, including ambulating without an assistive device, but she was limited by right knee pain and the knee “locking up”.
Her PMH was significant for multiple comorbidities: Significant for Hypertension, Diabetes Mellitus, Hyperlipidemia, Asthma, Anemia, Cervical spine stenosis, Elevated Hemoglobin, Ehlers-Danlos syndrome, Depression, Metabolic syndrome, and Premature Ventricular Contraction (PVC). Her past surgical history is significant for Bilateral TKA, Anterior cervical discectomy with fusion, and Caesarean Section.
During her initial evaluation completed on 12/26/20, Valerie presented an alert and oriented to person, time, and place, and able to follow multi-level commands. She presented with hypomobility of her right knee (flexion ROM of 81 degrees and extension at negative 6 degrees) and weakness in her right quadriceps and hamstring muscle strength (2+/5 on the Manual Muscle Testing grade). She had difficulty with her bed mobility requiring close stand-by assistance, and she required supervision for her transfers. She was dependent on a pair of axillary crutches for ambulation using a 2-point gait pattern. She also used an antalgic gait pattern and exhibited poor arthrokinematics in the right knee. Her balance was assessed with the Timed Up and Go test (TUGT)5, with a score of 17 seconds; this identified her as having a high risk of falls.
The patient’s right knee surgical incision was covered with “Aquacell”, a non-removable dressing on the day of PT evaluation. It was removed by skilled nursing during the subsequent visit on 12/29/20. PT assessed the patient’s surgical incision during all follow-up visits, for signs and symptoms of infection. This is part of agency protocol that all clinicians will assess surgical incision and document appropriately; coordination of care is performed weekly with the RN case manager.
The patient’s pain level and description were assessed and documented during the initial PT evaluation and subsequent visits. The PT provided education to the patient and her husband regarding pain management strategies with her prescription analgesics, cryotherapy, and movement.
Based on the hypomobility of her Right knee joint and the weakness of her right hamstring and quadriceps muscles, the International Classification for Functioning, Disability and Health (ICF) model ICD diagnosis of M25.661 (stiffness of right knee, not elsewhere classified), was made.
PT determined that patient will benefit from skilled intervention with a frequency of 3 times per week for 3 weeks, per previously established protocol with referring surgeon. The intervention included therapeutic exercises (including a range of motion [ROM], strengthening exercises, and joint mobilization), functional mobility training (including bed mobility, transfer, gait, and stair training), instruction in-home exercise program, balance reeducation, safety education, equipment training, patient and caregiver education, and training, to progress her to independence in all areas.
Days 1-10 acute phase (with emphasis on ROM, isometric and isotonic exercises)
Days 11-21 the sub-acute phase (with progression to advancing ROM, strengthening exercises, and joint mobilization)
Home exercise program (HEP) – the patient was instructed to perform her HEP 2-3 times daily. HEP was upgraded from Phase 1 to Phase 2 as the joint effusion and pain decreased, the right LE muscle strength and coordination improved.
The patient completed 8 of 9 planned HHPT visits, and she had progressed to independent bed mobility and transfers by her third visit on 12/30/21. By the end of the 3rd week her progress was as follows:
The patient’s plan of care was developed based on a combination of her impairments following her right TKA, functional limitations, and goals. She made steady progress towards her stated goals of independence with all of her functional mobility and all of her ADLs, without pain and locking up of her Right knee joint. The patient regained full AROM of her right knee joint and regained muscle strength to engage in her regular activities. She progressed to and demonstrated independence with all of her mobility and planned to resume telecommuting the following week once cleared by her surgeon.
During HH services, the patient was diagnosed with postoperative anemia by her PCP, which is common among surgical patients.7 Following the initial incidence, her vital signs and symptoms were monitored more frequently. Her surgeon and PCP were contacted to report her symptoms, and because the patient was discharged from home health skilled nursing services on 12/29/21, the PT provided education to the patient regarding the possible drug interaction of her iron supplement prescribed by her PCP. Ferrous Sulfate can bind to Doxycycline in the Gastrointestinal tract, which may decrease their absorption and bio-availability. They should be taken 3-4 hours apart to avoid or minimize this interaction. The therapist also provided education to the patient and her husband regarding food rich in Iron to complement her medication.
Several studies have identified the common reasons for visits to the emergency room after TKA. (7-9) A study reported 15.6% of ED visits were for swelling, and 15.8% were uncontrolled pain.8 Another study reported that among patients who had ED visits after THA and TKA, the primary diagnosis in 17.84% was pain.9 To decrease unnecessary visits to the ER, our agency has developed a comprehensive education program for post-op THA and TKA patients. PTs share the information with the patient on the first visit regarding the red flags of infection and possible DVTs; and education regarding pain and edema management. The same information is reviewed on the 2nd and 3rd visits until the patient can verbalize the previously provided information.
This case report highlights the effective management of a TKA patient in the HH setting while incorporating the patient’s unique PMH and postoperative complications. Her exercise program and joint mobilization were modified to accommodate her Ehlers-Danlos condition and her vital signs more closely monitored with the postoperative anemia. Her exercise program was progressed from the initial set more suited for the immediate acute phase to more advanced exercises in the sub-acute phase. She was progressed to independent ambulation without an assistive device on a level surface and with a one-handed device on uneven surfaces.
About the Authors
Babatope Olusina, PT, DPT, Certificate of Advanced Competency in Home Health (APTA Home Health Section). He is a member of the APTA and Home Health section. Dr. Olusina now works for a home health agency in Richmond, VA, but previously owned and ran a Contract Therapy Staffing Company.
Dr. Olaide Oluwole-Sangoseni, PhD, DPT, MSc, GCS, is an associate professor of physical at Maryville University of St. Louis. She is a Board Certified Geriatric Specialist and a home health PT. Dr. Sangoseni is an advanced physical therapy clinical specialist degree in neuro-orthopedics from the University College London, England. She is an APTA credentialed clinical instructor. She can be reached at osangoseni@maryville.edu.
References
It can be stressful when an elderly loved one is admitted to a hospital or healthcare facility. You likely have a lot on your mind, and what to do when they are discharged may be one of the last things you are thinking about. However, it’s best to think about it early on so you are prepared to bring your loved one home.
You won’t know if you don’t ask. Don’t be afraid to ask your medical team any questions you may have. There are no silly questions when it comes to your loved one’s well-being.
While every person and situation is different, here are some questions you might want to ask (or might help you think of other questions you have):
Oftentimes, bringing someone home from a hospital or facility is more involved than simply getting in the car and driving them home. Whether they are going to their own home or to yours, there may be steps you need to take to make the home safe and accessible. A safe return home can be the difference between being readmitted to a hospital and a full recovery.
Let’s start with the first place your loved one will encounter when coming home: the entry. Make sure there are no cracks or other damage to sidewalks or steps that could cause them to trip. If there are steps (and they can use them), make sure there are sturdy railings for them to hold onto. If they cannot use steps, have a ramp installed.
Falls are a leading cause of injury for seniors, so it is important to reduce the risk for falls as much as possible.
The majority of seniors’ falls occur in the bathroom, so it’s an important room to focus on when preparing the home for your loved one. You can help make the bathroom safer by:
Remove fire hazards from the home, including:
Remember to check the batteries in and test all smoke detectors.
If your loved one lives in a home with multiple floors, make sure railings are sturdy and safe. Look into stairlifts if they are not able to use the steps. If possible, eliminate the need to use the steps at all and set up a one-level living environment.
If your loved one is able to live at home alone, medical alert systems can be great for their safety and your peace of mind. There are many options available that can be worn around their neck. If they fall, they can press a button and be connected to help right away.
Depending on your loved one’s needs, special equipment (known as durable medical equipment) may be needed when they return home. This can include:
Durable medical equipment (DME) that is prescribed by your doctor is covered by Medicare Part B. Medicare offers a great tool on their website that can help you find places near you to get the DME you need.
Have a plan for the day your loved one comes home. Who will be picking them up? What time? Do you need to get any medications or supplies on your way home? Having a plan will make the transition home go smoothly.
Talk to your loved one’s medical team about any other information you need to know. Ask them to go over things like medication and warning signs to look out for and when to call the doctor’s office.
If you can, include your loved one in conversations with the doctor about what to expect when they get home. Life at home will likely be different for them, and that can be difficult to cope with. Hearing it from the doctor and having the chance to ask questions can help make the transition easier for them.
There can be a lot to do before bringing a senior home from the hospital or a facility. Having conversations and starting preparations early can help make the transition smoother for everyone.
People often shy away from talking about end-of-life wishes. In fact, the Conversation Project found that although 92% of people feel it’s important to discuss end-of-life wishes, only 32% actually do. But it doesn’t have to be a scary topic that you avoid. In fact, it’s incredibly important to have the discussion.
As your loved one grows older, they may be hesitant to talk about their end-of-life wishes. And you may not want to bring it up because it forces you to face the fact that they won’t be here forever. Trust us, we get it. However, it is incredibly important to talk about it. Here’s why.
End-of-life conversations give us the chance to die well. What does that mean? It means our wishes are known and followed, and we have the opportunity to live our life – right up to the end – the way we choose to.
By discussing their end-of-life wishes, you will have a better understanding of how they want things to happen. This will prevent you from needing to try to guess or figure it out on your own.
That brings us to our next point. Knowing what a person wants makes it easier on those caring for them. If you discuss it with your loved one, you don’t have to worry about making the right decisions on their behalf because you already know what they want. If you don’t discuss it, you may worry if you are doing right by them. Talking about what they want and having a clear plan eliminates this pressure.
It’s also not uncommon – in situations where the patient becomes unresponsive, such as in a medical emergency – for the family to argue over what the right decision is. This just creates added and unnecessary stress and trauma for everyone. All of which can be avoided by knowing and understanding your loved one’s wishes ahead of time.
Your loved one may already know what their end-of-life wishes are. They might just be unsure of how to bring it up. Maybe they just need you to start the conversation. But how do you?
This Conversation Starter Guide is a wonderful tool to help us get the conversation started. It includes prompts to answer to help cover all the bases. Encourage your loved one to fill it out, with you or on their own. Then, you can sit down together and talk about their answers. If you have this guide printed out, you can take your own notes and save it so you are prepared.
It’s important to keep the conversation going. Our wishes can change over time so it’s important to keep one another updated.
End-of-life planning isn’t about dying – it’s about living. Understanding your loved one’s end-of-life wishes allows you to understand how they want to live their last months, weeks, and days. So, start the conversation and keep it going.
In 2020, an estimated 41.8 million adults in the United States were caregivers of someone 50 years of age or older. That’s one in six Americans. In honor of National Family Caregivers Month, we want to take the opportunity to applaud all these caregivers for all they do for those they love.
You work round the clock to care for someone you love. Maybe it’s a parent. Maybe it’s a spouse or partner. No matter who it is, you are committed to doing the best you can for them because you love them. And because you know they would do the same for you. But it’s not easy. We know that. So, we want you to take a minute to yourself right now to read this. Because this is for YOU.
You have taken on the responsibility of being the primary caregiver for a loved one who is ill. That’s no small task. You are there for them at all hours of the day and night- whenever they may need you.
Being a caregiver can be stressful on its own, but many of you are not only a caregiver. Whether you have a full or part-time job, volunteer, have children to care for, or anything in between – you have other responsibilities also. Juggling all those responsibilities can be overwhelming at times, and with all these things to take care of, you don’t often have time to stop to take care of yourself.
You don’t have to do it all on your own. Lean on friends and family for help and support. When it starts to feel like it’s too much, call a friend or loved one. Ask them for help or just to talk or listen. A strong support system is essential.
Maybe you feel like your friends and family don’t understand what you’re going through, and you want to talk to someone who has a similar situation. There are support groups available for caregivers. Through these, you can meet others who have similar situations as you. You can share stories with them or share tips with one another. At the end of the day, having someone you can lean on is so important.
With everything you need to get done in a day, we understand that it can be easy to neglect yourself and your own needs. However, it’s incredibly important that you take time for yourself. Do your best to carve out time to do something you enjoy. Do something that is for you and no one else. It’s not selfish. You NEED to do it.
It’s important to be able to take some time to do something that helps you decompress. Go for a walk. Read a book. Listen to a podcast. Whatever helps you unwind after a long day- do it! You need this opportunity to recharge so you can be at your best.
We understand it can feel overwhelming at times, but we want you to know you are doing great! You aren’t going to be at 110% every day. You may have an ‘off day,’ and that’s okay. We all have them. Just remember to show yourself some grace. You have taken on a huge role, and it’s not easy. You won’t be perfect – no one is. But each day, you rise to the challenge and do what you need to do to be there for your loved one. That’s what matters.
Don’t give up. And don’t ever doubt yourself. You are amazing!
By: Laura Mantine, MD
During periods of crisis, like the COVID-19 pandemic, family members and close friends continue to provide daily care for their loved ones. These caregivers provide the initial response and defense for individuals who are often battling chronic medical illnesses. Like many first responders, caregivers often experience stress due to heavy workloads, fatigue, and anxiety. There are important steps that caregivers can take to help manage and cope with this ongoing pressure.
Caregivers should develop habits and strategies to maintain their own physical health and emotional well-being. A caregiver can reduce transmission of a virus by diligent personal and patient hygiene. Washing hands with soap and water for at least 20 seconds frequently throughout the day has been shown to reduce viral spread. It is also important to wash your hands during food preparation, toileting, and blowing your nose, coughing, or sneezing. To be at your best, be sure to eat healthy, balanced meals, maintain a regular sleep routine, and find chances to exercise whenever possible. There is also a constant barrage of pandemic-focused news that can be overwhelming, so try to limit your intake to a certain time or times each day, and do not mistake social media opinion for fact. Remember to take care of yourself, as your loved one’s well-being relies on your ability to maintain your own.
Over any amount of time, caregiving can be physically, mentally, and emotionally exhausting. Caregiver burnout can happen in any caregiver-patient relationship, but the risk is heightened in times of increased stress like the COVID-19 pandemic. When suffering from burnout, a caregiver may experience hopelessness, overwhelming anxiety, sleep problems, or difficulty coping with everyday tasks. Although caregiving is a major responsibility, it shouldn’t completely overtake an individual’s life. Make time for yourself and take breaks when possible. Use these spare moments to listen to your favorite music, read, or work on a hobby. Also, stay connected to friends and family. Social distancing doesn’t mean total isolation so reach out to friends and family regularly for casual chats and wellness checks. Consider spending time together virtually, whether by watching a movie over a video chat session or playing games together online. If you live with loved ones, find ways to help and support each other.
During these uncertain times, caregivers remain a valuable constant for their loved ones. Please stay physically and mentally healthy as you perform your crucial role.
“Family Caregiving During the COVID-19 Pandemic.” Scott R Beach, Richard Schulz, Heidi Donovan, Ann-Marie Rosland. Gerontologist. 2021 Jul 13;61(5):650-660.
“Ensuring Adequate Palliative and Hospice Care During COVID-19 Surges.” Jean Abbott, MD, MH; Daniel Johnson, MD; Matthew Wynia, MD, MPH. JAMA. 2020;324(14):1393-1394.
By: Joelle Jean, FNP
Caring for a loved one who is terminally ill and on hospice is emotionally and physically taxing. In 2015, an estimated 39.8 million caregivers provided unpaid care to an adult with a disability or illness. The estimated value of the service supplied by caregivers is up to $470 billion since 2013.
Caregivers may deny help from others, perhaps out of guilt or obligation. However, 1 out of 6 caregivers report not being asked what they need to care for themselves. Caregivers can work up to 8.3 hours per day or 66 hours per week during their loved ones’ last days of life. Often, this is in addition to working a full-time job and caring for their own immediate family.
Caregivers are at risk for depression, severe fatigue, or burnout, or even health issues such as hypertension, stroke, obesity, or weight loss due to stress.
A caregiver, also known as an informal caregiver, is an unpaid individual or group of individuals who provide care to a loved one. Caregivers can be a spouse, family members, partner, friend, neighbor, or combination of these individuals.
A caregiver assists their loved ones with activities of daily living which include:
A caregiver can also play a significant role in coordinating care for their loved ones. Many are appointed power of attorney or the primary decision maker for their loved ones, managing finances, property, and most suitable medical care for the individual.
There is no clear definition of caregiver stress. The Merriam-Webster dictionary defines stress as “a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation.” Burnout can be a response to stress, defined as extreme emotional exhaustion. According to stress.org, stages of burnout are:
A caregiver with stress or burnout exhibits signs of feeling overloaded, overwhelmed, emotionally drained, tiredness, detachment from the person they are caring for, and a reduced sense of accomplishment.
Caregiver stress affects the person or people directly caring for their loved one. Stress can also affect caregivers in different ways. For example, one caregiver may find specific tasks stressful or overwhelming while another caregiver may find the task relaxing and rewarding.
Often, caregivers are not aware of their stress or feeling of burnout. Signs and symptoms of caregiver stress can be subtle or obvious. It is important to identify caregiver stress so it can be eased.
Anxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:
Caregivers suffering from stress may not realize they are fatigued. Fatigue is the body’s response to burnout and can be physical, emotional, or psychological.
Stress can cause weight changes and affect eating patterns. Weight change can occur when dealing with caregiver stress. Rapid weight gain or unexplained weight loss is a warning sign of caregiver stress and should be addressed appropriately.
Caregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.
Feeling overwhelmed or anxious is normal. Caregivers may become overwhelmed with the amount of care needed to provide to their loved ones. Trouble concentrating, changes in sleep patterns, and changes in eating habits may occur.
Losing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:
Chronic stress (or stress lasting for more than six weeks) can have lasting health problems. Caregivers exhibiting signs and symptoms of stress and burnout have a higher chance of developing health risks.
Caregivers can suffer from high blood pressure due to the stress of caring for a loved one in hospice. If caregivers have already been diagnosed with high blood pressure, stress can make the disease worse. Uncontrolled high blood pressure puts caregivers at higher risk for:
The immune system is in place to protect the body from illness and disease. Stress can cause a weakened immune system. With a weakened immune system, caregivers can become sick or develop chronic illnesses such as:
Studies have shown that a symptom of chronic stress is the shrinking of the brain. Shrinking of the brain causes short-term memory loss. Short term memory loss affects learning, judgement, and memory process.
Stress can cause headaches and body pains. On a hormonal level, the increase of cortisol causes headaches even at rest. The physical nature of caring for a loved one on hospice- lifting, standing, walking, and rotating- can cause severe body pain or injury.
Self-care is imperative for caregivers caring for their loved ones in hospice. Self-care means caring for yourself, so you can improve your health to care for others.
Finding the time and the energy to exercise might sound difficult. However, even carving out 30 minutes a day has positive effects on your health. Exercising whether it is running, walking, swimming, or doing yoga will lower blood pressure, increase energy, and improve mood.
Accepting help can be difficult for some caregivers. It is important to ask and accept help so that you are available for your loved one mentally and physically.
Under most insurances and Medicare, respite care is available to relieve the burden of caregiver stress. Respite care will give short term caregiver relief to those who are in need.
Eating and sleeping well are fundamental in protecting your physical and mental health. A well-balanced meal of fruits, vegetables, and plant-based foods is important for physical and mental well-being. Adding vitamins such as a multivitamin, vitamin D, or vitamin B-12 can also help improve your mood and energy.
Having a good night’s sleep has many health benefits. Feeling well-rested and energized will only benefit you, as the caregiver, and your loved one. Improved memory, mood, and overall well-being are all benefits of quality sleep.
Support groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they aren’t alone. Support groups:
Maintaining personal relationships is as important as joining support groups. Meeting up with friends or family members allows you to relax. It also allows you to take time for yourself and time away from your loved one.
Awareness of caregivers’ stress and burnout must be addressed and acknowledged for caregivers to feel supported and recognized for their challenging work. The hospice team and its services are a fundamental part of bringing this awareness to the forefront.
You’ve heard the expression before – “laughter is the best medicine.” But it’s more than just a cliché phrase. There is some truth behind it. Think about it. We’ve all had a tough day where things just weren’t going right. Then, something made you laugh. You instantly felt better, right? This is because laughter is healing. There is actually science that backs this up.
Besides just making you feel warm and fuzzy inside, laughter also has a ton of mental and physical health benefits that are proven to help you live a happier, healthier life.
Let’s face it, we are all stressed for one reason or another. But as a caregiver, you have an added layer of stress. So you need a way to reduce that stress. Think about the last thing that made you laugh. Now think about how it made you feel. Happy and relaxed? This is because laughter reduces your level of stress hormones, such as adrenaline; and increases your level of health-enhancing hormones, such as endorphins. These ‘feel-good’ hormones are then released into the area of your brain that is responsible for emotion. So the more you laugh, the better you will feel!
Stress is tough on your body. Being over-stressed and burnt out can weaken your immune system and cause you to get sick more frequently. On the other hand, the stress relief and increase in positive emotions caused by laughter can actually strengthen your immune system.
We don’t have to tell you how important it is to take care of your heart. It’s what keeps us going by providing oxygen and important nutrients to our brain and other vital organs. Laughing increases your heart rate and the amount of oxygen in your blood. This improves the vascular function and can actually decrease your risk of heart attack.
Laughing is an excellent way to improve your mood. Nothing cures a bad mood quite like laughter. It can eliminate anger and depression and produce a general feeling of well-being. And people want to be around happy people. So when you are in a good mood and laughing, you are likely to attract other happy people. Sharing a laugh with friends and family can help you feel more connected to them, forming a strong and lasting bond.
So how can you add more laughter to your life? It’s not like it’s something you can just add to your schedule. Here are some ways to naturally increase laughter:
When the stress feels like it’s piling up, take a deep breath and do something that makes you laugh. After all it is the best medicine!
Additional Information on Stages and Behaviors
AT Home Care & Hospice is an established, full-service Virginia home health and hospice agency that provides a superior quality of services in a caring manner.
AT Home Care & Hospice prides itself by partnering with the We Honor Veterans Program. We have a team of highly-trained individuals who work with our Veteran patients during their time of need.