Caregiver Stress Awareness in Hospice CareBy: Joelle Jean, FNPCaring 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.What is a caregiver?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:BathingDressingEatingToiletingShoppingHousekeepingTransportationMedical tasks such as giving medications, changing wound dressings, and managing painA 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. What causes caregiver stress or burnout?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:EnthusiasmStagnationFrustrationApathy or loss of interestA 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.Who is most affected by caregiver stress?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.What are the signs and symptoms of caregiver stress?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.AnxietyAnxiety is a stress response, activating the fight or flight response that happens chemically in the brain. Physically, anxiety can be described as:Increased heart rateFeelings of doom or hopelessnessStomach pain and or spasmsHeadacheSweatingHeavy breathingFeeling weak or tiredWorryFatigueCaregivers suffering from stress may not realize they are fatigued. Fatigue is the bodys response to burnout and can be physical, emotional, or psychological.Weight changesStress 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.IrritabilityCaregivers may become easily annoyed or short-tempered with loved ones, family members, or friends. Feeling irritable may be a warning sign of caregiver stress.Feelings of being overwhelmedFeeling 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.DepressionLosing interest in activities can be a sign of depression due to the demanding responsibilities of caregiving. Signs of depression include:Little interest or pleasure in doing thingsFeeling down or hopelessChange in sleep patternsFatigue and tirednessThoughts of death or suicidePotential health risks as a result of caregiver stressChronic 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.High blood pressureCaregivers 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:StrokeAtherosclerosis or disease of the arteriesHeart attackOrgan damageWeakened immune systemThe 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:Inflammation throughout the bodyIncrease in fat in the blood and bodyChronic painFrequent colds and infections Short term memory lossStudies 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. Headaches and body painsStress 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. How to relieve or prevent caregiver stress and burnoutSelf-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.Exercise regularlyFinding 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.Asking and accepting help from othersAccepting 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.Eat and sleep wellEating 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 nights 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.Seek out support groupsSupport groups add immense value to caregivers who are caring for loved ones in hospice. Joining support groups reassures caregivers that they arent alone. Support groups:Allow you to talk about your feelingsHelp you realize others are going through the same situationReduces stress and depressionTeaches coping skills and ways to divert stressMaintain personal relationshipsMaintaining 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.
Now What? Your Post-Caregiving Grief Guide By Gary Bruland, Bereavement Counselor - Grane Hospice HarrisburgNow what? You may be asking yourself this question if you served as your late loved ones primary caregiver. You dedicated your time and talents, lovingly and sacrificially giving yourself, having offered your heart, soul, mind, and strength. You put your own needs and interests on hold. Now that your loved one or friend has died, you may feel sadness, loneliness, and an enormous void left by the loved one. But you may also feel a measure of relief. Youre not only grieving the loved one or friend that was lost, but you are also at a loss. Youre likely grappling with two basic post-caregiving questions: Who am I after having been a caregiver? What shall I do now? While grief often seems like a long and solitary journey, be assured that you are not alone. According to the AARP Public Policy Institute from 2017, there were an estimated 40 million caregivers in the US caring for another adult, such as a parent, spouse, sibling, son, daughter, other relative, friend, or neighbor. Today, many of these 40 million Americans are now former caregivers who are walking their own post-caregiving grief journey. What follows are some strategies for journeying through grief for you who have served as compassionate caregivers. In our Harrisburg-area Growing through Grief sessions, we focus on the four tasks of healthy grieving as set forth by Dr. J. William Worden. One of these tasks involves an effort to identify who you are as an individual apart from your late loved one. In other words, you will want to begin to reinvest your life in ways consistent with your own personal interests, vision, and values. But how do you do this? You can begin to identify who you are apart from your loved one by asking yourself three questions: Who were you before your loved one came into your life? Who were you when he/she was in your life? Who are you now without that person in your life? Asking yourself these questions to help determine who you are as an independent person is an essential part of making it through your journey of grief. Borrowing a principle from career counseling may also be helpful in your grief recovery. This principle asserts that you can find your new calling or new identity at the intersection of your strengths, your interests, and what most benefits others. Work on finding this intersection, as you drive the detour of grief, and you may very well discover ways to reinvest your life. Others may come alongside you to give care, comfort, and support for a time. But your grief journey will continue until you define and redefine yourself after their death. Death changes the roles we play, and these roles help to define us. Another factor in identifying who you are independent of your loved one involves reviewing the various interests and activities you may have participated in because of, or with, your loved one. Will you continue to do these things without your loved one? As you work on your grief recoveryand as you work on finding a new sense of purpose post-caregivinglet me close with a word of encouragement. You may still be feeling mad, sad, or bad about your loved ones death; or, you may feel as if you died with them; or, you may still feel that youll never adjust to a new normal without them. While feeling adrift or at a loss, Now what? is a perfectly natural and, sometimes necessary, response. You can be assured that as you do your grief work, the heaviness of your grief in these days will lessen and get lighter in days to come. The fog of grief will lift. You may discover that part of your new purpose in life is to be an advocate for a special cause. New advocacy or activism on behalf of an important issue or cause may become a powerful and positive part of your growing through grief. It may help you heal from your pain and loss. Be assured, youll always remember your loved one. Youll also remember your grief and pain, but as you work through your grief on this long journey, the pain will decrease and not be as intense. In time, you will heal. In time, you will move into a new normal, enjoying a revitalized life. In his booklet Rebuilding and Remembering, Kenneth Haugk talks about rebuilding your life: Give yourself permission to live again, to laugh again, to enjoy life again. Living again affirms your loved one, who would want the best for you. Susan Zonnebelt-Smeenge and Robert DeVries in their book, Traveling Through Grief, offer some helpful insights for you to consider: How can you know you are done grieving? While there are many evidences which suggest that your grief journey is drawing to a close, here are four major evidences youll want to look for: You are able to talk about your deceased loved one and recall special memories without strong emotional reactions like breaking down crying or feeling significant pain. You have dealt with all the feelings (such as anger, guilt, or sadness) that you may have felt about your relationship with the deceased. You can be by yourself and not feel intense loneliness or yearning for your deceased loved one. You made decisions about the disposition of their things and have chosen few keepsakes, having sorted and stored special memories to be retrieved and reviewed. You feel confident as a complete and whole person in yourself. You are able to smile again, and you feel you have positive things to contribute to others. On behalf of the compassionate staff of Grane Hospice Care, I wish you well as you continue in your journey of growing through post-caregiving. Gary Bruland, Bereavement Counselor, Grane Hospice Harrisburg
Transitioning Alzheimers Patients to HospiceMaking the Transition to Hospice with Alzheimers and Other Forms of DementiaAlzheimers disease and other forms of dementia are progressive diseases that eventually lead to end of life for those suffering. When your loved one reaches more challenging stages of dementia, hospice care is extremely valuable. Hospice is a specialized type of care that focuses on comfort and quality of life for patients who are terminally illwith a prognosis of six months or less if their disease runs its normal course.How to Transition to Hospice Care with Ease and Peace of MindTransitioning to hospice care can be a difficult decision, but it can also be a relief for both patients and caregivers. Hospice care can provide your loved one with the support and care they need during their final months of life. You do not need to wait until the very end to initiate hospicewhich is a common misconception. To transition to hospice care with ease and peace of mind, here are a few tips:Talk to your loved ones Primary Care Physician (PCP). If your loved one does not have a Primary Care Physician, we can help you obtain an order for hospice care. The PCP will write an order to initiate hospice. This is step one.Get to know the hospice team.Once you meet with us, you will be assigned a team of caregivers who will work with you to create a care plan for your loved one. The hospice team will include nurses, social workers, aides, and other professionals who are skilled in caring for people with dementia.Let us take care of the rest!We will bring in all necessary supplies and durable medical equipment (DME) that your loved one will need to be safe and comfortable in the place they call home.More Ways We Can HelpOur Hospice agency can provide a variety of services to help you and your loved one transition to hospice care. These services may include:Caregiver support. Hospice offer a variety of support services for caregivers, such as respite care, support groups, and counseling.Symptom management. Hospice will help manage your loved ones symptoms, such as pain, nausea, and anxiety.Spiritual support. Hospice offers spiritual support for patients and their families, regardless of their religious beliefs.Volunteers. Hospice volunteers are a vital part of our program and offer a variety of services to you and your loved one.If you are considering hospice care for your loved one with Alzheimers or another form of dementia, please contact us today. We make the process simple, letting you focus on what matters most!