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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!
If you are caring for a loved one who is living with Alzheimer’s disease, you do not need us to tell you that it’s not easy. This progressive disease is difficult to cope with – for both the person living with it and their loved ones. People living with Alzheimer’s may become frustrated when they find themselves struggling to do things they used to do without any problem. And it is hard for you, as the caregiver, to watch the person they once were gradually fade away. They may have brief moments of clarity where it feels like they are themselves again; only to break your heart when the moment is gone.
While there is nothing anyone can do or say to “fix” what you and your loved one are going through, we want you to know you do not have to face it alone. The Alzheimer’s Association has an abundance of resources for both those living with Alzheimer’s and their caregivers. There are support and educational programs available for both, as well. Take advantage of these resources. They are there to help make things a little easier.
It all starts with gaining a better understanding of the disease and how it progresses. Alzheimer’s leads to nerve cell death and tissue loss throughout the brain. This results in the brain shrinking dramatically over time which impacts nearly all its functions.
Although scientists are not completely certain what causes cell death and tissue loss in a brain affected by Alzheimer’s, plaques and tangles appear to be the culprits. Plaques form when protein pieces called beta-amyloid clump together, and tangles destroy a vital cell transport system made up of proteins. Plaques and tangles tend to spread through the cortex in a predictable pattern as Alzheimer’s disease progresses, but the rate of progression varies greatly.
In the earliest stages, plaques and tangles begin to form in brain areas involved in learning and memory, as well as thinking and planning. In this stage, a person can still function independently but may start to notice they are sometimes forgetting familiar words or where to find everyday objects.
Someone in this stage may struggle to:
In the middle stage, more plaques and tangles develop in the regions of the brain important for memory, thinking, and planning. This leads to the development of problems with memory or thinking that are severe enough to interfere with work or social life. In this stage, someone with Alzheimer’s may have trouble handling money, expressing themselves, and organizing their thoughts. Plaques and tangles also spread to areas involved in speaking and understanding speech and the sense of where your body is in relation to objects around you. It is in this stage that many people are first diagnosed.
Symptoms vary from person to person, but may include:
Most of the cortex is seriously damaged by the time someone reaches the late stage of Alzheimer’s disease. By this point, the brain shrinks dramatically due to widespread cell death. Individuals often lose their ability to communicate, recognize family and loved ones, and to care for themselves in this stage.
In this stage, symptoms are severe and may include:
The Alzheimer’s Association provides excellent resources for caregivers for each stage. Visit the links below to learn more.
When you take on the responsibility of caregiver, you also take on a lot of extra stress. Between tracking medications and keeping other family members in the loop, you have a lot on your plate. We want to help lighten the load so we’ve put together a list of a few free* mobile apps that you may find helpful in keeping it all together.
You have a lot going on. With work, home, and caregiving responsibilities pulling you in a million different directions, you feel the pressure. And we can’t blame you. So we’ve chosen a couple of stress management apps to help you remember to pause and take a breath. You need it.
Oak helps you decompress by transforming your meditation practice from an experiment into a habit. It includes both guided and unguided meditation and breathing exercises, as well as progress tracking. Help calm your mind at bedtime with the guided breathing exercises designed to help you relax as you drift off to sleep.
Journaling is a proven method to reduce stress. Use this digital journal to vent your thoughts and feelings, to track your mood, and increase happiness. Never journaled before? That’s ok! The intelligent journal system gives you personalized prompts and affirmations to help combat anxiety and build a healthier lifestyle rooted in mindfulness.
Caring for a loved one comes with a lot to keep organized. These apps can be helpful in keeping things in order, such as communicating health updates to other family members and keeping track of medications.
Sometimes part of the stress of caring for a loved one is keeping other family members in the loop. CaringBridge is a free, secure online tool to help you share healthcare updates with family and friends, all in one place. Simply create a site using your email address or Facebook account and start sharing updates. Features include a journal where you can post updates for family members to react to and a planner that allows you to ask for help with errands and tasks. Set up co-authors to allow other people to post updates.
You have a lot to keep track of, including medication management. This app allows you to ensure your loved one is taking their medication at the correct time and in the correct dosage. It also includes a visual of what the medication looks like to help make it easier to keep track of what is what.
Your to-do list is growing and growing, and you sometimes wonder how you will ever keep it all straight. The apps below can be helpful in keeping your tasks in order so you are sure not to miss anything.
With a never-ending to-do list, it may feel impossible to keep track of everything you need to do. With the Microsoft To Do app, you can create to-do lists, reminders, and notes to help keep you organized. Create lists so you can categorize your tasks, share tasks with others, and stay focused using the My Day daily planner feature.
Sometimes it can be difficult to find time to plan ahead for dinner. The Allrecipes Dinner Spinner app makes it easy to search for recipes by keyword, ingredients, cook time, and more. It also includes step-by-step instructions to follow along with, as well as a shopping list feature that allows you to add the entire recipe or individual ingredients to your grocery list.
These are only a few examples of the many apps available on the Apple App Store and Google Play Store. We hope you find them helpful in managing your journey as a caregiver. And remember, you’ve got this! You’re doing GREAT!
Hospice of the Midwest supports that our patients have the right to determine their own goals of care during the final stages of their illness. We focus on comfort, support, quality of life, and education. Hospice of the Midwest promotes a patient-centered approach.
Hospice of the Midwest 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.