In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents’ death panel.
For the many other families facing the same journey, experts’ best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if you’ve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. “It’s all pre-planning really,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. “People really do cope well if they have a conversation about care with their families early. When families don’t have the conversation, that’s when there’s turmoil because no one is prepared and it’s inevitable.”
Here are some tips for making end-of-life care easier to handle:
Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.”
Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says.
Involve your doctor. “I think it’s really important that when these medical decisions are made, the family and the doctor are present,” says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. “Not all doctors are comfortable talking about end-of-life kinds of issues.” Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed.
Get it in writing. “It’s not enough to just have a conversation once and not talk about it again and it’s also not enough to fill out legal documents and never discuss wishes with family members,” says Malley. “Both need to be done.” Aging with Dignity has created “Five Wishes,” a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or don’t want, and what they want loved ones to know.
Here are some other documents the National Institute on Aging recommends for everyone:
Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples.
“Doctors feel compelled to treat, no matter what, most of the time,” says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. “They are also afraid of getting sued for ‘hastening death.’ The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense.”
Recognize that you might not be the best person to take over. “The person who becomes the health care proxy needs to be comfortable with that,” says Levine. “Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be.” Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later.
Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. “I often see people who get into hospice care and wonder why they didn’t hear about it sooner,” says Davis. In many cases, that may be because people see hospice as “giving up” — though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients.
Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. “Talk about it early because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one,” says Davis.
Hearing loss is common as we get older, but that doesn't mean it should be ignored. For many older adults, hearing changes happen gradually. They may not realize how much their hearing has changed, or they may become accustomed to asking people to repeat themselves, turning up the television, or avoiding conversations in noisy environments.Family members are often among the first people to notice that an older loved one may be having difficulty hearing. Recognizing the signs and approaching the subject with patience and understanding can make it easier for a senior to receive the hearing care they need.Understanding Hearing Loss in Older AdultsAge-related hearing loss can develop slowly over time. Rather than suddenly losing the ability to hear, an older adult may gradually have more difficulty understanding certain voices, following conversations, or hearing higher-pitched sounds.Hearing loss can affect more than the ability to hear words. It can make communication more challenging and may cause an older adult to miss important information or feel frustrated during conversations.Because hearing loss often develops gradually, a person may not realize that others are speaking normally while their ability to hear and understand has changed.Signs Your Loved One May Have Hearing LossFamily members may notice signs of hearing loss before an older adult recognizes them.Some common signs include: Frequently asking others to repeat themselves Turning the television or radio volume up very high Having difficulty following conversations Struggling to hear in restaurants or other noisy environments Frequently misunderstanding what people say Having difficulty hearing on the telephone Watching people's faces closely while they speak Complaining that everyone seems to mumble Avoiding social gatherings or group conversations Responding inappropriately because they misunderstood a question If several of these behaviors sound familiar, it may be worthwhile to encourage your loved one to have their hearing evaluated.Hearing Loss Can Affect More Than CommunicationIt can be easy to think of hearing loss as simply a problem with hearing conversations. However, communication difficulties can affect many areas of an older adult's daily life.Someone who struggles to hear may become frustrated when talking with family and friends. They may stop participating in group conversations because they cannot follow what is being said.Over time, an older adult may begin avoiding restaurants, community activities, family gatherings, or other social situations where hearing is difficult.Helping a loved one address hearing difficulties can make it easier for them to remain engaged with the people and activities they enjoy.Why Some Seniors Resist Hearing CareIt isn't unusual for an older adult to be reluctant to acknowledge hearing loss.They may believe that their hearing is "good enough," feel embarrassed about needing hearing aids, or worry that others will view them differently. Some people may also assume that hearing loss is simply an unavoidable part of aging.Family members should approach the conversation with compassion rather than criticism.Instead of saying, "You can't hear anything anymore," try explaining how better hearing could make everyday conversations easier and help your loved one stay connected with family and friends.Start the Conversation With UnderstandingTalking about hearing loss can be sensitive. Choose a quiet, comfortable time to discuss your concerns rather than bringing up the subject during a frustrating conversation.You might explain that you've noticed they are having difficulty hearing and that you would like to help them find out why.It can also help to make the conversation about their quality of life rather than focusing on what they are doing wrong.For example, you can point out that a hearing evaluation could help them hear conversations more comfortably at family gatherings, restaurants, or other activities they enjoy.Encourage a Hearing EvaluationIf you or your loved one notices signs of hearing difficulty, the next step is a professional hearing evaluation.A hearing evaluation can help determine whether hearing loss is present and provide information about the type and degree of hearing difficulty.Depending on the results, a hearing professional can discuss available options and help determine what may be appropriate for the individual's hearing needs and lifestyle.It's important not to purchase hearing aids simply because someone else has had success with a particular model. Hearing needs vary from person to person, so professional guidance is valuable.Hearing Aids May HelpFor some people with hearing loss, hearing aids can make communication easier.Modern hearing aids come in a variety of styles and features. A hearing professional can help determine which options may be appropriate based on an individual's hearing loss, lifestyle, comfort, and personal preferences.It can take some time for a person to adjust to wearing hearing aids. Family members can support the process by being patient and encouraging their loved one as they become comfortable with their devices.How Family Members Can Improve CommunicationEven when an older adult is receiving treatment for hearing loss, family members can make conversations easier.Try these simple communication strategies:Get Their Attention FirstMake sure your loved one knows you are speaking to them before beginning a conversation.Face Them When You SpeakFacing the person can make communication easier and allows them to see your facial expressions and other visual cues.Reduce Background NoiseTurn off the television or move to a quieter area when having an important conversation.Speak ClearlySpeak at a natural pace and avoid shouting. Speaking louder does not always make speech easier to understand.Be PatientGive your loved one time to process what you've said and respond. If they don't understand, try rephrasing the statement rather than simply repeating the same words louder.Don't Ignore Sudden Hearing ChangesWhile gradual hearing loss is common, sudden changes in hearing should not be ignored.If an older adult experiences sudden hearing loss, particularly in one ear, they should seek prompt medical attention. Sudden hearing changes can have different causes and may require urgent evaluation.Other symptoms such as dizziness, severe ear pain, drainage, or sudden neurological symptoms should also be evaluated by a healthcare professional.Hearing Care Can Help Older Adults Stay ConnectedHearing is an important part of maintaining relationships and participating in everyday life. When an older adult has difficulty hearing, the effects can extend beyond conversations.Families can play an important role by recognizing potential signs of hearing loss, approaching the subject with compassion, and encouraging professional hearing care.If you suspect that a parent, grandparent, spouse, or another loved one is experiencing hearing loss, don't wait until communication becomes extremely difficult. A professional hearing evaluation can provide valuable information and help your loved one understand their options.Darrell M. Sipe Opticians & Hearing Aids provides hearing care services designed to help individuals better understand their hearing needs and explore appropriate solutions.Better hearing can mean more meaningful conversations, greater participation, and more opportunities to stay connected with the people who matter most.If you're concerned about a loved one's hearing, start the conversation today. A hearing evaluation can be an important first step toward better communication and a better quality of life.
Our eyes allow us to enjoy many of life's most important momentsfrom seeing the faces of family and friends to reading a favorite book, driving, working, and enjoying the outdoors. As we age, however, changes in our vision become more common.Some changes are a natural part of getting older, while others may be related to eye diseases or other health conditions. The good news is that there are steps you can take to help protect your vision and support healthy eyes throughout your life.Here are some important ways to care for your eyes as you age.Schedule Regular Eye ExaminationsOne of the best things you can do for your vision is to have regular comprehensive eye examinations.An eye exam isn't only about determining whether you need a stronger prescription for your glasses. Your eye care professional can also evaluate the health of your eyes and look for signs of potential problems.Some eye conditions can develop without obvious symptoms in their early stages. Regular examinations can help identify changes early, when they may be easier to manage.Your recommended examination schedule may depend on your age, health, family history, medications, and individual eye-care needs.Don't Ignore Changes in Your VisionAs you get older, you may notice changes such as needing more light to read, having difficulty seeing at night, or experiencing increased sensitivity to glare.While some vision changes can be associated with normal aging, you should not ignore significant or unexpected changes.Contact an eye care professional if you experience: Persistent blurry vision Difficulty seeing at night New or increasing floaters Flashes of light Distorted vision Double vision Loss of peripheral vision A sudden change in your eyesight A sudden change in vision can require prompt medical attention, so don't wait to have it evaluated.Protect Your Eyes From the SunYour eyes are exposed to ultraviolet (UV) radiation throughout your lifetime. Protecting them from excessive sunlight is an important part of maintaining healthy eyes.When outdoors, wear sunglasses that provide 100% UVA and UVB protection. A wide-brimmed hat can provide an additional layer of protection.If you wear prescription glasses, prescription sunglasses can provide both vision correction and protection from bright sunlight. Polarized lenses may also help reduce glare from surfaces such as roads, water, and snow.Eat for Your Eye HealthA healthy, balanced diet supports your overall health and can contribute to healthy eyes.Include a variety of fruits and vegetables in your diet, particularly colorful produce and leafy green vegetables. Fish, nuts, and other nutrient-rich foods can also be part of a balanced eating pattern.If you are considering vitamins or supplements specifically for eye health, talk with your healthcare provider or eye care professional before taking them.Manage Your Overall HealthYour overall health and your eye health are closely connected.Certain conditions, including diabetes and high blood pressure, can affect the eyes. Following your healthcare provider's recommendations for managing these conditions is an important part of protecting your vision.Take prescribed medications as directed, attend recommended medical appointments, and discuss any new vision symptoms with your healthcare providers.Protect Your Eyes From InjuryEye injuries can happen at any age. Wearing appropriate protective eyewear can help reduce the risk of injury when working with tools, chemicals, machinery, or other materials that could potentially harm your eyes.Protective eyewear may also be appropriate for certain sports and hobbies.Don't assume that an activity is safe simply because you have done it many times before. A moment of protection can help prevent a serious eye injury.Take Breaks From Digital ScreensComputers, smartphones, tablets, and other digital devices are part of everyday life for many older adults.Spending extended periods looking at screens can contribute to digital eye strain. Symptoms may include tired eyes, dryness, headaches, and temporary blurry vision.Try following the 20-20-20 rule: every 20 minutes, look at something approximately 20 feet away for at least 20 seconds.Adjusting your screen position, brightness, and lighting can also make digital devices more comfortable to use.Avoid SmokingSmoking can negatively affect your overall health and is also associated with an increased risk of several eye-related problems.If you smoke, quitting can be an important step toward improving your overall health and supporting your long-term eye health.If you are interested in quitting, speak with your healthcare provider about resources that can help.Get Enough SleepYour eyes need rest, just like the rest of your body.Not getting enough sleep may contribute to tired, dry, or irritated eyes. Establishing a consistent sleep routine and giving your eyes a break throughout the day can help promote greater comfort.If you regularly experience significant eye discomfort or dryness, talk with an eye care professional.Review Your Medications With Your Healthcare ProviderAs we age, many people take medications for a variety of health conditions. Some medications can affect the eyes or cause changes such as dryness or blurred vision.Don't stop taking a prescribed medication on your own. Instead, talk with your healthcare provider if you notice new vision-related symptoms or have concerns about your medications.Keep Your Prescription Up to DateYour vision prescription can change as you age. Even if your glasses are still in good physical condition, the prescription may no longer provide the clearest vision possible.Signs that your prescription may need to be updated can include: Squinting to see clearly Frequent headaches Blurry vision Eye strain Difficulty reading Trouble seeing at night Difficulty seeing clearly at a computer An eye examination can determine whether your prescription needs to be changed.Be Aware of Age-Related Eye ConditionsAs we get older, the risk of developing certain eye conditions increases. These may include cataracts, glaucoma, age-related macular degeneration, and other conditions that can affect vision.Some of these conditions may not cause noticeable symptoms during their early stages. That's another reason regular eye examinations are so important.Your eye care professional can help you understand your individual risk factors and recommend appropriate care.Protecting Your Vision Is a Lifelong CommitmentYou can't prevent every change that may occur in your vision as you age, but you can take steps to support your eye health and identify potential problems early.Regular eye examinations, healthy lifestyle choices, UV protection, appropriate protective eyewear, and paying attention to changes in your vision are all important pieces of a long-term eye health plan.Don't wait until a vision problem begins interfering with your daily life before seeking help. If you've noticed changes in your eyesight or it's been a while since your last eye examination, consider making an appointment with your eye care professional.Darrell M. Sipe Opticians & Hearing Aids is committed to helping patients maintain clear, comfortable vision with professional eye care and quality optical services.Your eyes have been with you for a lifetime. Taking care of them today can help you continue to see the people, places, and experiences that matter most for years to come.
Moving a loved one with dementia into a memory care community can be an emotional and challenging experience for both the individual and their family. Adjusting to a new environment, routine, and group of caregivers takes time, but there are ways families can help make the transition feel more comfortable and familiar. From having important conversations before the move to staying involved afterward, small steps can make a meaningful difference.Supporting Your Loved One Through the Transition to Memory CareHave a Conversation Before the MoveBefore a transition to memory care, it may be beneficial to have a conversation about the move with your loved one. Start by sitting down with them one-on-one in a calm and quiet space when you feel the time is right. Explain what they can expect from their move and new day-to-day in a simple, reassuring way and give them the opportunity to express any thoughts or concerns. Also try to involve them in decisions where possible.Make Their New Space Feel Like HomeYou dont want to move your loved one into a space that feels unfamiliar and cold. Not every piece of furniture or decor has to be brand new either. They want to feel comfortable and at home, and there are plenty of ways to do that for them. During the move, bring familiar furniture with them, their beloved photographs, knick-knacks, artwork, and other meaningful items.Another way to make their space feel like home is to incorporate familiar scents or items that remind them of home. Familiarity can be especially comforting for individuals with dementia, as recognizable belongings, surroundings, and even scents can give them a sense of security in an unfamiliar environment.You can also maintain that sense of familiarity by implementing their everyday routines into new daily life. Whether its enjoying morning coffee, listening to their favorite music, or enjoying daily walks, these familiar routines can help make the new environment feel a little more like home. Routines help to promote independence and reduce stress for individuals with dementia.Stay InvolvedStaying involved after a move provides a variety of emotional and situational benefits for both you and your loved one. For your loved one, seeing a familiar face regularly will help reduce feelings of anxiety and unease. Additionally, regular visits will help them feel valued, comforted, and connected to the people they know and love.For you, visiting your loved one and their community will allow you to build a relationship with staff. This can allow you to get to know the people who take care of your loved one day to day as well as share your own insight into your loved ones unique personality, habits, preferences, and history. You also will be able to get regular updates on how your loved one is doing and adjusting and receive updates on changes to their care plan.Your visits dont have to be lengthy, but ensure that youre getting the most out of them. You can participate in activities or community events or just drop in whenever youd like. Bring photos, your loved ones favorite snacks, or something you can do together like a game or craft.Give Them Time to AdjustA new environment, daily routine, and unfamiliar faces can feel overwhelming for someone with dementia. It may take time for them to become comfortable with their new surroundings and to recognize the people around them. If you experience a particularly difficult transition initially, its important to keep in mind that it doesnt mean you made the wrong decision. There may be good days and difficult days as your loved one adjusts, and thats okay.Let the Care Team HelpYou dont have to navigate a transition alone.From Executive Directors and nursing staff to the culinary and activities teams, your loved ones care team is there to support you both throughout the transition. The team will learn your loved ones preferences, routines, unique personality, and needs in order to make their experience lively and comfortable. Additionally, you should share any information with the care team that you think is relevant, whether its what comforts your loved one, what they enjoy, or what might cause frustration or discomfort with them. You can also check in with the staff whenever you feel the need.At Northland Heights, our team takes the time to get to know each resident as an individual and wants each resident to feel comfortable, valued, and at home every day.Give Yourself GraceLastly, as a caregiver and family member, its vital to give yourself some grace in the process.Its normal to experience guilt, sadness, or uncertainty during a transition to memory care. It can be difficult to let someone else take on some of the responsibilities of taking care of your loved one, and because of that your role may look different now. Choosing memory care for your loved one doesnt mean that youve stopped caring. Youre still a huge source of comfort, familiarity, and connection for them.If youre struggling with feelings of guilt as a caregiver, remember youre not alone. Learn more about caregiver guilt and overcoming these feelings in our recent blog post.Adjustment Takes TimeTransitioning to memory care is a big change, and its completely normal for both you and your loved one to take time to adjust.Its crucial to remember that you dont have to navigate any of it alone. By creating a familiar environment, staying involved, maintaining routines, and keeping in the loop with your loved ones care team, you can make the process feel more comfortable and reassuring. There may be challenges, but with time, patience, and support, your loved one can begin to feel comfortable, connected, and at home in their new community.
At Commonwealth Hospice, your well-being is our number one priority. We recognize you have many choices available for a hospice provider, and our goal is to provide a team of healthcare professionals that will fill these days with care, compassion, and support. Our experienced team is committed to giving our clients the care they want, while offering guidance through some of life's most challenging circumstances. We strive to make a positive difference in the lives of our patients, families, and the communities we serve. We invite you to find out more about our hospice program, our staff, and what makes Commonwealth Hospice a preferred provider.Experience matters. The leadership group at Commonwealth has decades of experience. We've seen what works and, more importantly, what could be done better. All of us have personally experienced hospice with a loved one, so we know what you're going through. Quality over quantity. Commonwealth is not a large, profit-driven healthcare network that treats people like numbers. We are smaller, local, and our only goal is to provide unparalleled care for our patients, their families and to support the facilities where many of our patients reside. Commitment to caregiver and family support. Being the primary caregiver to a family member on hospice is difficult. It is natural to experience self-doubt, anxiety and worry, in addition to the tremendous sadness associated with the impending loss of someone dear to you. At Commonwealth, we understand the challenges primary caregivers and other family members face, and have made it our mission to provide the best possible support and education. Our nurses and aides will take the time to sit with you, craft a comprehensive care plan, and make sure you have a full and complete understanding of what to expect. We'll discuss medications, any equipment that may be, or may become, necessary, as well as likely disease progressions so you are as prepared as possible for the road ahead. Should something come up between regular visits, staff are available 24 hours a day. Caregiver, facility and community education. Commonwealth has a dedicated Education Department to support primary caregivers and families, and to provide Pennsylvania Department of Human Services approved in-services for staff in facilities where our patients reside. Trainings cover a variety of topics, including infection control and proper transfer techniques, as well as First Aid/CPR, and medication administration. We also offer 'virtual dementia' training, designed to help us all better understand the struggles and challenges experienced by people suffering from dementia. Our goal is to support and educate our patients' caregivers in every way we can, whether that caregiver is an aide in a facility or a family member in the home.