For Caregivers & Families Archives

Oct 09

Two mature women sitting together outside, one comforting the other

Anticipatory Grief and How to Cope

By Christy Kessler For Caregivers & Families, Grief & Loss

Have you heard of anticipatory grief? If you have a terminally ill loved one, you may already be experiencing its effects. To help you better understand what you’re feeling and how to cope with it, let’s talk about anticipatory grief and several tips for coping with it as you make the most of your remaining time together.

What is Anticipatory Grief?

Anticipatory grief, also known as preparatory grief, is a type of grief that occurs before the actual loss or death of a loved one. This form of grief is a common experience among family members and friends of a terminally ill person. Anticipatory grief can be complex and challenging, as individuals may experience various emotions, including stress, sadness, anger, guilt, and anxiety.

Anticipatory grief can be a positive or a negative experience. On the one hand, having time to process the emotions of grief before the loss can spur you to make meaningful choices. For example, you could spend more time with your loved one, or take the opportunity to have meaningful conversations and say things you’ve always wanted to.

On the other hand, the stress of watching someone you love slip away a little at a time, such as with Alzheimer’s disease or cancer, can bring about feelings of helplessness, anxiety, and stress.

5 Strategies for Coping with Anticipatory Grief

If you are dealing with anticipatory grief, these five coping strategies can help you process your complex emotions and gain peace even in a difficult situation.

1. Practice Mindfulness

Anticipatory grief can be overwhelming and all-consuming. Practicing mindfulness can help you stay present and grounded. Take a few moments each day to focus on your breath and observe your thoughts and feelings without judgment.

You may reflect on the things you are grateful for learning from the person you love. What valuable lessons have they taught you? What values have they passed on that you will carry with you after they are gone? Feel free to share these thoughts with the person you love, if you can. It will mean more to them than you know!

2. Connect with Others

Anticipatory grief can feel isolating because the loss has not yet occurred. That is why reaching out to friends, family members, and mental health professionals who understand what you’re going through is so important. Understanding and acknowledging anticipatory grief can help you cope with the impending loss and find meaning and peace during a difficult time. Join a support group or seek out a therapist who can provide guidance and support throughout this journey and beyond.

3. Take Care of Yourself

Grief of any kind can be physically and emotionally exhausting. Take care of yourself by getting enough sleep, eating well, and engaging in activities that bring you joy.

If you are a primary caregiver for a terminally ill loved one, practicing self-care is crucial to your well-being. Feelings of frustration and burnout can make anticipatory grief even more challenging because you might feel guilty for getting angry or losing patience.

Ensure that you are not neglecting your needs as you care for another individual. You might take a walk to clear your mind, take a nap if you are exhausted, and follow routines that keep you grounded and centered.

4. Express Your Feelings

It’s essential to allow yourself to feel your emotions and express them in healthy ways. Write in a journal, create art, or talk to a trusted friend about your thoughts and feelings.

Emotions can hold power over us if they go unacknowledged and unexpressed. But when you name an emotion, it loses some of its power. Even if your emotions are not what you want them to be, take the time to understand them and find a way to express them.

5. Focus on What You Can Control

Anticipatory grief can feel overwhelming because it involves so many unknowns. Focusing on what you can control rather than what you can’t control is helpful.

Preparing for a loss in practical ways may help bring a sense of control. You may want to focus on estate planning, funeral planning, and even writing the obituary in advance.

Gather a team of experts around you to help you. Your team might include an estate planning attorney, a funeral planning specialist from the funeral home, hospice nurses, caregivers, and an accountant who can assist with tax issues and questions.

The more prepared you are for a loss, the more you will be able to be in the moment with your loved one in their last days and weeks.

Woman sitting quietly at home with a cup of tea, looking out window and thinking

Anticipatory grief can be a challenging and emotional experience. However, these five strategies can help you cope and navigate this difficult time with grace and strength. Remember that grief is a natural part of the human experience, and it’s okay to seek help and support when you need it. With time and patience, you will find a way to honor the memory of your loved one and move forward with peace and healing.

Aug 16

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4 Benefits of Laughter for Hospice Patients and Their Families

By Courtney Cook For Caregivers & Families, Hospice

When you or someone you love receives a terminal diagnosis, laughter may be the last thing on your mind. As the transition to end-of-life care begins, you may feel overwhelmed by various emotions, like fear, anger, sadness, or despair.

But a positive mindset and humor can improve the quality of life of a hospice patient, boost their physical and mental health, and help them cope with their new situation. As you and your family begin to process the terminal diagnosis, laughter – at appropriate times – can bring you together and help you grieve well.

Here are four ways laughter and humor benefit those in hospice care. Plus, make sure you read to the end for some helpful tips for creating a positive atmosphere during this difficult time!

Benefit #1: Laughter helps you cope

family laughing together

Coping with a terminal diagnosis can be difficult for both a hospice patient and their family. But humor can help you change your perspective and make the most of the time you have left together. While death is serious, end-of-life situations often come with weird, peculiar moments, and laughing at those situations can help you have a more positive mindset. Plus, humor is a positive coping skill that can show acceptance, rather than avoidance, of the situation.

Benefit #2: Laughter provides relief

couple laughing in hospice care

Laughter can also benefit those in hospice by relieving stress and tension. When we’re in a stressful situation, we often hold in our emotions. These emotions build within us, creating pressure. Laughter releases that pressure and brings those emotions to the surface, providing relief from the stress and tension. This doesn’t mean that negative emotions disappear; instead, laughter helps us relax and cope with our emotions in a healthier way.

Benefit #3: Laughter boosts physical health

couple laughing outside together

Most of us know the old cliche, “Laughter is the best medicine.” While this statement is an exaggeration, laughter does have some healing properties! Hospice is about improving a patient’s quality of life, and laughter can help. Laughter increases oxygen intake, which provides a boost for your internal organs, and it can alleviate pain by releasing positive endorphins. Plus, laughter helps boost your immune system, improve your blood flow, and burn calories – all of which can improve your health.

Benefit #4: Laughter connects you to others

group of elderly friends laughing together

Have you ever seen or read something so funny that you had to share it with someone else? Humor has a way of bringing people together and creating connections. Laughing with others helps you let down your walls and be less defensive, encouraging you to be more vulnerable. Laughter can also decrease loneliness, which can be a big problem for some hospice patients.

Laughing with others can also help decrease relationship tension and stress. During stressful situations, like coping with a terminal diagnosis, tensions can run high, creating conflict. Humor and laughter (at appropriate times) can alleviate tension in these difficult situations. Learning to make light of the awkward moments that may come with end-of-life care can help the patient, family, and hospice workers feel more comfortable with each other.

How can you create a more positive atmosphere?

family playing watching games together and laughing

After you or a loved one receives a terminal diagnosis, it may be hard to find ways to laugh. Here are a few different ways to incorporate more humor into your daily life.

Find humor in situations. Little funny things happen around us all the time, and finding humor in those moments is great! Just make sure that you’re laughing with someone, not at them.
Watch a funny TV show, movie, or video. Everyone has a different type of humor that makes them laugh. You can watch a favorite movie that you’ve always found funny or try something new!
Talk with kids. Kids can say the silliest things sometimes. If you have kids, grandkids, or know anyone with kids, take time to talk to them, play with them, and ask them questions.
Have a game night. Playing games with friends and family can often lead to shenanigans. Just stay away from Uno Draw Fours and Monopoly’s Boardwalk!
Share a cheesy joke. The best part of telling someone a cheesy joke or terrible pun is making yourself laugh! Even if no one else finds the joke funny, their groans are sure to make you laugh.

As you look to laugh more, remember that timing matters! Not everyone will feel like laughing during this time, and it’s important to be sensitive to the emotions of those around you – whether you’re the patient or your loved one is. Above all, focus on using laughter to create a positive atmosphere and mindset to make this difficult time a little easier for everyone.

Aug 03

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Assortment of medical supplies, like gauze, bandages, and scissors

Does Hospice Care Include Medical Supplies & Equipment?

By Christy Kessler For Caregivers & Families, Hospice

For most families, hospice care takes place right inside the home. But your home isn’t a medical facility – how do you access the medical equipment and supplies needed to properly care for your terminally ill loved one?

Thankfully, Medicaid, Medicare, and most private insurance companies provide generous coverage for hospice care, including medical equipment and supplies. In most cases, the family won’t have to pay for any medical equipment or supplies out of pocket, but always confirm with your insurance provider so you don’t end up with unexpected expenses. Some insurance companies require that you acquire equipment from certain sellers.

Now, to give you a well-rounded understanding of hospice medical equipment and supplies, let’s review 6 frequently asked questions.

How do I know which medical equipment or supplies my loved one needs?

Short answer: Talk to your terminally ill family member’s doctor. When you first request hospice care, both the primary care physician and the hospice medical director will assess your loved one’s overall health. If they certify that your loved one is eligible for hospice care, they will also determine what medical equipment and supplies are needed for your family member’s care.

Then, your hospice team of experts will work closely with you to coordinate the delivery and set-up of any equipment at your home. As your loved one’s condition changes, the equipment and supplies will change. For example, an oxygen tank may not be needed in the first month of hospice care, but it becomes necessary in the third month. Your loved one’s care is a continually evolving process, and your hospice team will help you navigate those changes.

What items qualify as “medical equipment”?

Medical equipment refers to items that are re-usable or intended for long-term use. Every hospice patient’s situation and care regimen are different, but some items commonly considered “medical equipment” are:

Hospital bed
Oxygen equipment
Geriatric recliner
Bedside commode or bedpan
Nebulizer
Shower chair
Wheelchair
CPAP machine
Blood pressure monitor
Walker or crutches
Bed lift
Feeding pump

This is not a comprehensive list, but it gives you a sense of which items are considered medical equipment. Your hospice team will continually assess your loved one’s condition and ensure that the right equipment is delivered when it becomes necessary.

What items qualify as “medical supplies”?

On the other hand, medical supplies are designed for one-time use. They are often easier to acquire and will be replaced as needed. Here’s an example list of medical supplies:

Bandages and gauze
Briefs, pads, and other continence care supplies
Disposable gloves, needles, or syringes
Oxygen tubing
Personal care products, like soap and shampoo
Cushions and wedges
Catheters

You can certainly purchase any personal care items on your own, but hospice care will provide them, if you wish.

Will someone show me how to use the medical equipment and supplies?

Absolutely. A member of your hospice team will clearly explain how to use each piece of medical equipment. They will also educate you on the correct use of any medical supplies, as you may need to clean wounds or administer medications. If you have questions, your hospice provider will provide an emergency assistance number.

What happens when the medical equipment is no longer needed?

As your loved one’s condition evolves, medical equipment will come and go in your home. When something is no longer needed, your hospice team will arrange its removal.

Are there any extra supplies I should gather?

When you sign up for hospice care, the admissions nurse may suggest that you purchase a few supplies. While most things are provided through your insurance policy, there may be some items to purchase on your own. Confirm with your chosen hospice provider, but here are a few items you might choose to have on hand.

Twin sheets (two sets)
Disposable or cloth under-pads
Baby monitor or bell for the patient to use when they need help
Thermometer (forehead type is best)
Bendable straws (if the patient does not have swallowing issues)
Mild or bland food (like oatmeal, applesauce, pudding, or yogurt)
Night lights for hallways and rooms
Wastebasket near the bed
Loose nightshirt or nightgown

You are not required to have any of these items on hand, but it may make the transition to hospice less stressful if you are prepared in advance. You can always double-check with the hospice provider to see if they will provide these items. In some cases, they will.

If you have more questions, reach out to a respected hospice provider in your area. They can answer any additional concerns you may have, regarding medical equipment or hospice care in general.

Sep 01

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older woman in hospital bed receiving care from nurse

When is it Time for Hospice Care?

By Daniel Zepeda For Caregivers & Families, Hospice

Choosing hospice care can be a difficult decision. Often, the conversation is hard and can bring a weight of reality to your situation. Even so, choosing end-of-life care may be the right and best next step for your family. Hospice care can actually lighten your load as a caregiver and make your remaining time as a family more enjoyable and comfortable.

If you’re wondering if it’s time for hospice care, here are 6 signs to consider. But first, let’s start with a basic understanding of the purpose of hospice care and how it can help your sick loved one as well as the rest of your family.

The Purpose of Hospice Care

While the phrase “hospice care” may seem a little scary, it’s important to remember the true mission and purpose of hospice care organizations. Hospice programs are designed to support and guide families. The experienced staff will care for your loved one during their final days and assist your family with caregiving needs. The goal of hospice is to allow a person to die comfortably and with dignity in their home or hospice centers, surrounded by those they love.

6 Signs That it’s Time for Hospice Care

Now, let’s talk about 6 signs that may signal it’s time to consider whether hospice might be the right option for your family.

1. Rapidly declining overall health

Perhaps the biggest sign that it’s time to consider hospice care is when there is a significant decline in health. Frequent trips to the hospital or reoccurring infections can quickly lead to a lower quality of life. Even less severe trends such as increased sleeping, mental confusion, and falls can be causes for concern.

Another clear sign that end-of-life care may be needed is if the individual is experiencing constant pain or shortness of breath. Hospice nurses are equipped to care for these types of health issues and can offer relief from pain or discomfort.

2. Given six months to live by a doctor

When a loved one receives a terminal diagnosis, end-of-life care is usually the next conversation to have. Hospice care organizations offer medical care, comfort, and support to families. If you have financial concerns, Medicare or Medicaid often cover many aspects of end-of-life care, provided the doctor determines that life expectancy is six months or less.

Even if you enroll in hospice care, it’s possible that the terminally ill person could make a full recovery or symptoms may lessen. If this occurs, great! You can always discontinue care or request to receive care for longer than the standard six months after talking with a doctor. If it seems likely that they won’t recover, though, end-of-life care could be the right option for maintaining the best quality of life.

3. Eating and drinking less

Have you ever had an older pet that stopped eating and drinking? Similarly, human beings also have a sense of when the body is letting go. Whether because of disease, diminished mental capacity, or simply old age, loved ones typically tend to eat and drink less when their time gets closer. They also tend to lose weight and experience changes in their body composition during this time. If you see this occurring, it may be time to consider asking hospice care to help.

4. Unable to perform daily tasks

When a loved one is unable to care for themselves, especially if they live alone, it may be time to consider hospice care. Everyday tasks such as eating, getting dressed, walking around, using the restroom, maintaining personal hygiene, and more become very difficult as health deteriorates.

Talk to a doctor to have your loved one’s health assessed, and with approval, you can look into your care options. A hospice care professional can make sure that your loved one has all the assistance needed, while maintaining their dignity and making everyone feel as comfortable as possible.

5. Displaying unusual or abnormal behavior

It can be emotionally distressing to see a loved one go through sickness and enter the final stage of life. Not only do you see the sudden physical changes, you also witness changes in their behavior and actions, such as changes in how they interact with friends and family.

Many loved ones who are in hospice care often make statements and requests that seem out of character. They might also begin to give away their personal belongings on a whim. Another sign to keep in mind is if your loved one is making apologies or saying goodbye. Ideally, a person will already be receiving hospice care by this point, but if not, it’s okay. There is certainly still time to request it.

6. Feeling stressed and overwhelmed as a senior caretaker

Being a caretaker is a serious commitment. While you may want to commit to caring for your loved one, which is admirable, it can be stressful to take on that responsibility and maintain the other parts of your life. Choosing hospice care for your loved one is not a selfish decision, but an act of love. It’s giving them the care they need and deserve, just as they loved and cared for you.

In some ways, deciding to enroll in end-of-life care may feel like you’re giving up or that you’ve stopped caring. That couldn’t be further from the truth. Enrolling in end-of-life care is about making your loved one’s life more comfortable. It’s about doing everything possible to ease their pain and make life better.

What’s Next?

If your loved one is exhibiting any of these signs (or many of them), the first step is to get them an appointment with a doctor. It could be that something else is wrong, and it’s better to catch it early. However, if the doctor does determine that the end of life is near, you can request hospice care assistance.

With the help of a trained end-of-life care professional by your side, you and your family can cherish your loved one’s final days to the fullest and offer each other loving support during a trying time.

Feb 22

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illustrates how patient can benefit from respite care

What is Hospice Respite Care?

By Christy Kessler For Caregivers & Families, Hospice No Comments

Caring for a terminally ill loved one is often equal parts rewarding and exhausting – physically, mentally, and emotionally. There are some amazing days where you make meaningful memories that will last a lifetime. Other days challenge you to the end of your endurance. To help caregivers stay balanced and prevent caregiver burnout, respite care is available to help.

What is Respite Care?

Respite care is short-term, in-patient care, designed to give family caregivers an occasional break to re-charge and rejuvenate. In many cases, Medicare benefits pay for patient transport and up to five (5) consecutive days of in-patient care at a Medicare-approved nursing home, hospital, or hospice facility. You can use respite care more than once, but only once during each benefit period. In case the term “benefit period” is unfamiliar, it refers to a 90-day period of care that your loved one can receive before they must re-certify that they are still eligible for hospice care.

Also, while many insurances (including Medicare) help cover this type of care, there may be a minimal cost to the family. Check with your insurance provider before entering into respite care.

Why Would I Request Respite Care?

Being a primary caregiver is an admirable undertaking. Caregiving takes strength, patience, and perseverance. It is not an easy task, and the demands on your time can pile up quickly.

With the challenges of caregiving, you might request respite care for many reasons, including:

Taking a Break

Caring for a dying loved one requires a lot of time, energy, and commitment. Over time, you may begin to experience “caregiver burnout” – physical and emotional exhaustion. With respite care, you can take a few days off to re-charge and care for yourself. This break provides an opportunity to rest and relax without worrying about the level of care your terminally ill loved one is receiving.

Focusing on Personal Health

Caregivers often neglect their own needs and are continuously giving their time, energy, and effort to caring for their dying loved one. Unfortunately, it’s not uncommon for family caregivers to experience depression, insomnia, changes in appetite, or become more susceptible to illness. Respite care gives you an opportunity to focus on your own health and wellness, so that you can come back with renewed energy.

Recovering from an Illness

Though this reason is similar to focusing on personal health, it’s more focused on sickness. If you catch a cold, the flu, or some other transmittable sickness, you definitely don’t want to pass that illness on to your terminally ill loved one. With respite care, you can take a few days to recover from your own sickness before returning to care for a loved one.

Attending Important Events

Life keeps moving forward, even when someone you love is dying. That means, there may still be weddings, graduations, or other events that you must attend. With respite care, caregivers can take a few days to attend these events without worrying about medical care.

Getting Increased Care for Your Loved One

Throughout the hospice journey, your loved one will experience ups and downs with their health. There will be times when their pain and symptom management is too much for you to handle on your own at home. During these times, you can request in-patient care where your loved one can receive the medical care they need for more severe symptoms.

Now that we’ve discussed a few reasons why you might request respite care, let’s talk about the benefits.

How Does the Caregiver Benefit from Respite Care?

For those who still aren’t sure about taking time away from a loved one, here are some of the biggest benefits caregivers see when they take advantage of respite care.

Improved sleep
Increased energy
Improved outlook
Reduced levels of stress and anxiety

Requesting respite care may feel like claiming a weakness or demonstrating that you don’t have what it takes to care for a loved one, but that couldn’t be further from the truth. The reality is – what you’re doing is hard and exhausting. Knowing your limits and taking time to care for yourself is a good thing. It will give you the energy you need to provide better quality care for your loved one and be at your best when they need you most.

How Does the Patient Benefit from Respite Care?

While respite care may seem like it mostly benefits the caregiver, there are also many benefits to the patient, including:

Reduced guilt over their caregiver’s stress or anxiety; glad to give their caregiver a break
Increased social interaction opportunities
Improved relationship to caregiver; stress affects both the caregiver and the patient

It’s beautiful and good to receive care at home from a loved one, but at times, everyone needs a break. With respite care, both caregiver and patient can come back together more refreshed.

How Often Can I Request Respite Care?

With hospice care, there are benefit periods, and you can request respite care once per benefit period. Under special circumstances, you might be able to receive additional care, but you will likely need supporting documentation to ensure the request is valid.

Every caregiver’s life comes with its challenges. If you just can’t provide the at-home care necessary for a dying loved one, consider looking into another living situation. Perhaps a different family member can step in to assist or you can look into care at a hospice facility or nursing home. To learn more about the options, go to “Where Can You Receive Hospice Care?”

But remember – to the hospice team, your loved one’s wishes always come first and supersede anything else. Be sure to discuss the options with your loved one before talking to the hospice team about any changes in location of care.

How Do I Request Respite Care?

If you’d like to request respite care, the best thing to do is talk to your hospice care team. They will help you prearrange dates for care and ensure that all the details are taken care of. If you aren’t sure when it would be a good time to be away, the hospice team can assess your loved one’s medical situation and give you guidance on timing.

Now that you understand the value of respite care – to both the caregiver and the patient – don’t be afraid to use this beneficial service for your well-being.

Jun 22

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Man looking out window, friend places comforting hand on shoulder

Self-Care Recommendations When Someone You Love is Dying

By Christy Kessler For Caregivers & Families No Comments

If you have a friend or loved one who is dying, you’re likely dealing with a lot of feelings right now: sadness, shock, disbelief, anger, anxiety. It’s normal to experience these emotions, and you have every right to feel the way you do. As you juggle your own grief with the need to be there, physically and emotionally, for your friend or loved one, you will need to care for yourself and realize that you can’t do it all on your own. Below, we will discuss 6 self-care recommendations that will help you tend to yourself and stay emotionally stable as you care for your friend or loved one in their final days.

1. Share Your Feelings

Someone you care deeply about is dying and will soon be gone. Odds are, you will also need support as you explore your own feelings about this illness and the changes you see in your friend or loved one. Find someone who will listen to you without judgment as you talk out your own feelings. To stay available to your loved one, you need to be able to work through your own feelings. Do this with someone you trust.

Grief support group with five people

Additionally, many hospices offer support groups for friends and family of the dying—both before and after the death itself. Take advantage of these compassionate resources.

2. Care for Your Body

Visiting or caring for a terminally ill person will zap a lot of your energy – both mental and physical. To make the most of the time you have left with your loved one, you need to make sure you aren’t running yourself ragged. Make sure to eat nutritious meals. Get plenty of rest. Continue to exercise. Spend time doing things that make you happy. Take a break from the sick room.

Nutritious meal with grilled chicken, tomatoes, and green salad

If you’re a primary caregiver, it may feel counter-intuitive or just plain wrong to take time away for self-care or to enjoy simple activities, but you will need these times to help you stay afloat. No one can sustain continuous stress, anxiety, and sadness without starting to crack. Adding a few self-care habits will help you keep it together and have the energy you need to be fully present with your loved one. Self-care has become more and more valued in our society, so make sure to take the time to do it.

3. Realize Your Own Limitations

It’s important to realize that not everyone can offer ongoing support to someone who is dying. If you feel you simply can’t cope with the situation, try to understand your reticence and learn from it. Ask yourself, “Why am I so uncomfortable with this?” and “What can I do to become more open and compassionate in times of need?”

Do not, however, avoid your friend or loved one altogether. Phone rather than visit. Write a letter or email if you can’t bring yourself to phone. Let them know that this situation is difficult for you while at the same time acknowledging that your friend or loved one’s fears and needs come first.

On the other end of the helping spectrum, don’t become obsessed with the illness or feel that you must be your loved one’s only means of support. Do not emotionally overburden yourself.

4. Establish a Routine

After a terminal diagnosis, everything may feel out of control. Your routine is upset. You are suddenly dealing with events, people, and emotions you didn’t expect. Your life has lost its normalcy and has been thrown into disarray. By establishing a routine, you can begin to gain back some of the normalcy and control you lost. When you feel comfortable in your routine, you can begin to process what’s happened and learn how to deal with and manage your feelings.

Man writing in day planner

Additionally, establishing a routine will help your dying friend or loved one. They also need structure to rely on, as their life has been thrown into just as much, if not more, disarray than yours. If you are a close caregiver, establish a routine together. If you are more on the periphery, make sure to communicate your wish to visit on a regular basis and find a time that works best for both of you.

5. Embrace Your Own Spirituality

If faith is part of your life, express it in ways that seem appropriate to you during this difficult time. Pray with your friend or loved one and with their family. Allow yourself to be around people who understand and support your religious beliefs. Read spiritual verses or poems. Sing songs. Find the comfort that your faith can bring to the hard seasons of life.

Woman praying in a religious building

If you are angry at God because of your loved one’s illness, that’s okay. Find someone to talk with who won’t be critical of whatever thoughts and feelings you need to explore. It’s normal to have questions or doubts when faced with death, but as you embrace your own spirituality, you will find the answers you need.

6. Seek Hope and Healing

As much as you may not want to face it, in time, your friend or loved one will die. To love and live wholly again, you must find a way to mourn. In fact, you cannot heal unless you openly express your grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming. As painful as it may be, you must embrace your grief in order to begin to heal.

Dr. Alan Wolfelt, a nationally recognized grief counselor and author, puts it this way: “You might fall into the common thinking of our society that denying these feelings will make them go away. You might have the urge to ‘keep your chin up’ and stay busy and wait to ‘get over’ your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.”

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient with yourself. Never forget that the death of someone loved changes your life forever.

With these 6 self-care tips in mind, start choosing the best ways to maintain your own self-health while supporting your dying friend or loved one. More than likely, you will still be tired and emotionally worn. However, these recommendations for self-care can help prevent you from reaching burnout as you journey alongside someone you love during their final days.

*Based heavily on a brochure by Dr. Alan Wolfelt. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping a friend in grief. Published with permission.

Jun 10

Love0

Husband talking to wife as she lies in hospital bed

8 Tips for Helping Your Family Through a Family Member’s Terminal Diagnosis

By Christy Kessler For Caregivers & Families No Comments

Learning that a member of your family is dying is often the most devastating news a family can receive. Your family is starting a journey they didn’t ask for and don’t want – with hospital visits, hospice care, grief, sorrow, and tears. But it doesn’t have to only be rainy days! You can create beautiful memories to cherish and turn your love and concern into positive actions. Together, let’s discuss ways you can help your family process a loved one’s diagnosis and how you can grieve well together.

1. Take Time to Accept What’s Happened

It’s going to take time to cope with your family’s new reality. Before the diagnosis, you may have thought this type of thing only happens to other families, and it’s hard to grasp that it’s now happening to yours. If the onset of the illness was sudden or unexpected, you and the rest of your family will likely feel shock and numbness at first. This is a natural and necessary response to painful news.

Don’t try to take it all in at once. Accept your new reality in doses or increments. First, try to understand the diagnosis in your head. Then, over the weeks and even months to come, you will come to understand it with your heart. Just take it one day at a time.

2. Be Aware of Your Family’s Coping Style

How you and your family respond to this illness will have a lot to do with how you as a family have related in the past. If your family is used to openly talking about their feelings with each other, they will probably be able to communicate more easily about the illness and the changes it brings. Families where people don’t talk about feelings and tend to deal with problems individually will probably have difficulty acknowledging the illness and its impact.

As you have conversations, you will find that some family members want to discuss the illness, while others seem to want to deny the reality and refuse to discuss it. Right now, your family may feel like a pressure cooker: you all have a high need to feel understood, but little capacity to be understanding. Try not to force anything and give each family member room to come to grips with reality in their own way.

3. Adjust to Changing Family Roles

A family member’s illness is going to necessitate changes – in routine, in roles and responsibilities, activities, and more. Your family may have a hard time adjusting to the changing roles. For example, if the head of the household is dying, the other spouse may now have to find a job in addition to caring for the home and children. If grandma acted as the family’s binding force before she was ill, her family may now feel confused and disjointed where they once felt strong and cohesive.

These changes can cause upheaval and high emotions, affecting how your family interacts. Depending on temperament and age, some may act short-tempered, overly dependent, or stoic, to name a few options for altered behavior. Each person’s stress, anxiety, or fear will manifest in different ways, so be on the lookout for it. Try not to take any outbursts personally.

4. Consider Getting Outside Help

One of the most compassionate things you can do for your family during this stressful time is to reach out for and accept help. If someone in your family is caring for the dying person at home, look into end-of-life care options. Have groceries delivered. Hire a housekeeper to come in twice a month. Talk to your church or other community organizations and ask for volunteers to help. And family counseling can be a healing, enriching experience that helps family members understand one another now and long after the illness.

Additionally, hospices are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is two-fold: 1) to help the dying die with comfort, dignity, and love, and 2) to help survivors cope both before and after the death. Contact your local hospice early in the dying process. Too often families wait until the last few days of the sick person’s life to ask for hospice care. When contacted early, hospices can provide a great deal of compassionate support and care up to six months before the death.

5. Understand What the Dying Person May be Feeling

Experiencing illness affects a person’s mind, heart, and spirit. While you don’t want to make assumptions about what another person may feel, do be aware that terminally ill people may experience a variety of emotions following a diagnosis. Fear, anxiety, anger, guilt, sadness, and loneliness are just a few of the emotions they may feel—one at a time or simultaneously.

These feelings are a natural response to terminal illness. Your role as caring family member should be to listen to the sick person’s thoughts and feelings without trying to change them. If they are sad, they’re sad. Don’t try to take that necessary emotion away. If they are angry or feeling guilty, that’s okay too. You may be tempted to soothe away or deny these painful feelings, but a more helpful response is to simply acknowledge them. Listen and understand.

6. Help Family Members Tend to their Own Needs

When a family member is dying, that person becomes the focal point for the entire family. Suddenly everyone is concerned about that one person and their coming death. This is normal, but family members should not lose sight of their own needs during this difficult time.

Encourage everyone to nurture themselves as well as the sick person. Get enough rest. Eat balanced meals. Lighten schedules as much as possible. And even though the family is experiencing a serious time, they should still give themselves permission to be happy. Plan fun events. Allow time to laugh, love, and enjoy life.

7. Embrace Your Spirituality

If faith is part of your family’s life, express it in ways that seem appropriate to you. Singly or together, you may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourselves to be around people who understand and support your religious beliefs. If one or more family members are angry at God because of the illness, realize that this is a normal and natural response. Try not to be critical of whatever thoughts and feelings each family member needs to explore.

8. Seek Hope and Healing as a Family

When a family member dies, each surviving member of the family must find a way to mourn if they are to love and live wholly again. It’s impossible to heal if you aren’t willing to openly express grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming.

Woman wearing black as she stands next to grave marker and holds white flowers

Remember, every family member will grieve in a different way. Leave room for different expressions of grief. Some will feel sad, others angry, guilty, or even relieved. Don’t judge the reactions of the other people in your family – simply realize that each of you will face the pain differently. Look for ways to honor and remember the person you’ve lost. These healing actions will help you find a way to move forward.

Reconciling your grief will not happen quickly. Grief is a process, not an event. Encourage your family to be patient with each other and kind to themselves. Your life as a family has changed forever, and it will take time, open sharing, and intentionality to discover the way forward.

Jun 08

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15 Bible Verses to Bring Comfort During Hospice

By Christy Kessler For Caregivers & Families, Grief & Loss No Comments

When you or a loved one are entering into hospice care, you may experience a wide variety of emotions: sadness, anger, shock, denial, relief, and guilt, to name a few. In the midst of the emotional turmoil, words of comfort from the Bible can be exactly what you need to bring comfort during a difficult time. Here are a few verses you can meditate on as you deal with the stresses of hospice for yourself or a loved one.

Verses to Bring Comfort

Matthew 11: 28-30

Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.

2 Corinthians 1:3-4

All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

Psalm 23

The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; leads me beside peaceful streams. He renews my strength. He guides me along right paths, bringing honor to his name. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. You prepare a feast for me in the presence of my enemies. You honor me by anointing my head with oil. My cup overflows with blessings. Surely your goodness and unfailing love will pursue me all the days of my life and I will live in the house of the Lord forever.

Matthew 5:4

Blessed are those who mourn, for they will be comforted.

Psalm 34:18

The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.

Lamentations 3:22-26, 31-33

The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. I say to myself, “The Lord is my inheritance; therefore, I will hope in him! The Lord is good to those who depend on him, to those who search for him. So it is good to wait quietly for salvation from the Lord. For no one is abandoned by the Lord forever. Though he brings grief, he also shows compassion because of the greatness of his unfailing love.For he does not enjoy hurting people or causing them sorrow.

Verses to Remember God’s Promises

Remembering the promises God has made to his people can not only comfort those who are mourning, but in many ways, they will also bring a renewed perspective of who God will be through this trial.

John 14:1-3

Don’t let your hearts be troubled. Trust in God, and trust also in me. There is more than enough room in my Father’s home. If this were not so, would I have told you that I am going to prepare a place for you?When everything is ready, I will come and get you, so that you will always be with me where I am.

Romans 8:35, 37-39

Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death?No, despite all these things, overwhelming victory is ours through Christ, who loved us. And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

John 14:27

I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.

Psalm 56:10-13

I praise God for what he has promised; yes, I praise the Lord for what he has promised. I trust in God, so why should I be afraid? What can mere mortals do to me? I will fulfill my vows to you, O God, and will offer a sacrifice of thanks for your help. For you have rescued me from death; you have kept my feet from slipping. So now I can walk in your presence, O God, in your life-giving light.

Verses of Hope for the Future

In addition to feeling God’s comfort and remembering His promises, many Bible verses give hope for the future – an eternal life in God’s presence. Moreover, verses that talk about Christ’s sacrifice and his victory over death give comfort that earthly death is not the end. Jesus has conquered death, as have His children. Because of His sacrifice, there is hope. Hope for a future filled with God’s goodness. Hope for life with Him in heaven.

1 Corinthians 15:50-57

What I am saying, dear brothers and sisters, is that our physical bodies cannot inherit the Kingdom of God. These dying bodies cannot inherit what will last forever.But let me reveal to you a wonderful secret. We will not all die, but we will all be transformed! It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed.For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies. Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: “Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?” For sin is the sting that results in death, and the law gives sin its power.But thank God! He gives us victory over sin and death through our Lord Jesus Christ.

John 11:25-26

Jesus told her, “I am the resurrection and the life. Anyone who believes in me will live, even after dying.Everyone who lives in me and believes in me will never ever die.

Job 19:25-27

But as for me, I know that my Redeemer lives, and he will stand upon the earth at last. And after my body has decayed, yet in my body I will see God!I will see him for myself. Yes, I will see him with my own eyes. I am overwhelmed at the thought!

Philippians 1:21-23

For to me, living means living for Christ, and dying is even better. But if I live, I can do more fruitful work for Christ. So I really don’t know which is better.I’m torn between two desires: I long to go and be with Christ, which would be far better for me.

*All Scripture verses are from the New Living Translation of the Holy Bible.

May 25

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Older man sitting quietly on stone steps as he thinks

Processing & Accepting Your Terminal Diagnosis

By Christy Kessler For Caregivers & Families, Hospice No Comments

You’ve just received the news you’ve been dreading ever since you had that first appointment: your medical condition is terminal. Right now, you may be feeling so many emotions – shock or disbelief chief amongst them. Even as you grapple with your feelings, you’re faced with an exceedingly difficult challenge: accepting that you are dying while striving to make the most of your days. In this article, we will discuss how to process the reality of your terminal diagnosis while also finding a way to continue to live fully even though you are dying.

Processing & Accepting the Reality of Your Diagnosis

The initial shock of your diagnosis may have faded, or it could still be front and center. Take a few days to allow the strength of your emotions to abate a little. Then, for both your own sanity and your family’s, start processing through your new reality so that you can make the most of your final days.

1. Acknowledge You Are Dying

Acknowledging you are dying is the first step to living the rest of your life. If your illness was sudden or unexpected, you’re going to deal with shock, disbelief, or numbness at first. This is a natural and necessary response to painful news. Don’t try to deal with everything at once; take your time. At first, you will understand everything with just your head, but in time, you will come to understand it with your heart.

To acknowledge you are dying is to let go of the future. It is to live only in the present. There is no easy way to do this, and you will probably struggle with this every day. However, by acknowledging and not denying the reality of your coming death, you will open your heart and mind to the possibility of a new, rich way of living.

2. Question the Meaning of Life

Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears, and hopes. Illness often establishes a new direction for our lives and makes us question some of our old habits. New thoughts, feelings, and action patterns will begin to emerge; embrace them. The unknown invites you to question and search for the meaning of your life, in the past, present, and future.

3. Accept Your Response to the Illness

Each person responds to news of terminal illness in their own way. You, too, will have your own response. You may feel fear, excitement, anger, loss, grief, denial, hope, or any combination of emotions. By becoming aware of how you respond right now, you will discover how you will live with your terminal illness. Don’t let others tell you how you feel. Instead, find people who encourage you to teach them how you feel. After all, there’s no right or wrong way for you to think and feel.

4. Respect Your Own Need to Talk or Stay Silent

You may find that you don’t want to talk about your illness at all. Or you may find that you want to talk about it with some people, but not with others. In general, open and honest communication is a good idea. When you make your thoughts and feelings known, you are more likely to receive the kind of care and companionship you need.

But if you don’t want to talk about your illness, don’t force yourself. Perhaps you will be able to open up more later on, after you have lived with the reality of your illness for a time.

5. Tell Your Family and Friends You Are Dying

As hard as it may be, your family and closest friends deserve to know that you are dying. Tell them when you feel able to. If you simply cannot bring yourself to tell them, ask a compassionate person you trust to share the news on your behalf.

Just as every terminally ill person reacts differently to a diagnosis, each family member or friend will react differently to your news. Some will sit in shock, cry, or refuse to believe it. Others will spring into helpful action by running errands for you, offering to clean your house, etc.

Many will not know how to respond. Because they don’t know what to say or do, or because your illness reminds them of their own mortality, they may even avoid you altogether. Please know that their apparent abandonment does not mean they don’t love you. Give them time to process.

Make sure not to neglect telling children. They, too, deserve to know. As with all people, children can cope with what they know. They cannot cope with what they don’t know. Be honest with them as you explain the situation in language they will understand. Don’t overexplain but do answer any questions they may have.

6. Be an Active Participant in your Medical Care

Many people are taught to be passive recipients of the care provided by medical experts. But don’t forget—this is your body, your life. Don’t fail to ask questions that are important to your emotional and physical well-being out of fear that you will be “taking up someone’s time.”

Learn about your illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. Ask questions of your doctor, home health or hospice nurses, and other caregivers.

If you educate yourself about the illness and its probable course, you will better understand what is happening to you. You will be better equipped to advocate for personalized, compassionate care. You may not be in control of your illness, but you can and should be in control of your care.

7. Be Tolerant of Your Physical and Emotional Limits

Your illness will almost surely leave you feeling fatigued. Your ability to think clearly and make decisions may be impaired. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Nurture yourself. Get enough rest. Eat balanced meals. Lighten your schedule as much as possible.

8. Say Goodbye

Knowing you will die offers you a special privilege: saying goodbye to those you love. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up for it, you might have a gathering for friends and family. Other ways of saying goodbye include writing letters, creating videos, and passing along keepsakes. Your survivors will cherish forever your heartfelt goodbyes.

9. Find Hope & Embrace Your Spirituality

When people are seriously ill, we tend to get caught up in statistics and averages: How soon will the illness progress? How long do I have left? These can be helpful to know, but they don’t always provide spiritual and emotional comfort.

Man and woman praying before a meal

Even if you are certain to die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. Hope means finding meaning in life—whether that life will last five more days, five more months, or five more years.

If faith is part of your life, looks for ways to express it. You may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of your illness, that’s okay; it’s a normal and natural response. Find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.

10. Reach Out for Support

While you may have been raised to be fiercely independent, confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to others, specifically the people you feel most comfortable with in stressful times. Give yourself permission to reach out for prayers, support, and practical assistance.

Hospice nurse helping older woman stand

Additionally, hospices are an indispensable resource for you. They are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. Whatever you do, don’t isolate yourself and withdraw from people who love you.

You still have a journey ahead of you – as you learn to accept and live with your diagnosis. Hopefully, these words have given you hope and a place to start as you process through your feelings and decide how to live the remainder of your days with purpose and intentionality.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping Yourself Live When You Are Dying. Dr. Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about the natural and necessary process of grief and mourning and to order Dr. Wolfelt’s books.

May 21

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Man sitting on rock outcropping, resting and recharging in nature

Caring for Yourself When Caring for a Loved One in Hospice

By Christy Kessler For Caregivers & Families No Comments

If you are caring for a loved one in hospice, you may be so preoccupied with your family member’s condition that you have very little time to process your own needs for self-care. Even if it’s been months, it’s usually not nearly enough time to come to grips with the reality that your loved one is dying. The fact is that you are experiencing prolonged anticipatory grief. And grief is hard! It’s unpredictable and grueling. It’s mentally, physically, and emotionally taxing.

Man sitting on rock outcropping, resting and recharging in nature

Depending on the nature of your relationship with your loved one, these feelings may persist for quite some time. That’s why self-care is so important. Every person’s grief journey is different, encompassing a range of emotions and an unknown time span, but in the midst of it all, taking care of yourself is important. You may not feel like you have time to take care of yourself right now, but self-care is one of the most beneficial things you do for yourself…and your family.

When you think about self-care, personal fitness may first come to mind, but really, it’s a much broader term. It does mean taking care of yourself physically, but it also encompasses your emotional, spiritual, cognitive, and even social health. So, what can you do to take care of yourself while you’re caring for a loved one in hospice?

1. Don’t be afraid of your feelings.

You feel what you feel. It is what it is, and there is absolutely nothing wrong with the emotions that may be coursing through you. We all feel loss differently, and every loss is different because every person and individual relationship is unique. Try not to stifle or ignore your feelings; don’t stuff everything down. Instead, accept that you feel what you feel and that it’s okay.

2. Give yourself time.

Grief is a journey, not an event. You will need time to come to grips with what it will mean to live without your loved one. While your loved one is in hospice care, you may have fallen into a particular routine, and you may not feel like you have time to grieve your loss as it’s happening. It’s okay to give yourself a little space and to take more breaks. Losing a loved one is hard, and you need time to work through your emotions, so you can be present in the moment with the person you are caring for.

3. Find ways to express your feelings.

It’s important to express your feelings in some way, but what you do is going to depend on your personality. For some, it’s helpful to go out into the backyard and chop wood or go to the batting cages and just whack the ball over and over again. For others, creative expression is helpful. Many times, journaling, creative writing, painting, drawing, arts & crafts, or other types of self-expression help us make sense of the seemingly senseless feelings going on inside. And if you are a person of faith, prayer, meditation, worship, or traditional rituals can help you express your grief.

4. Don’t neglect your health.

Most people feel more tired and less energetic when they are caring for a sick loved one. For this reason, it’s important to get plenty of sleep. If you are having trouble sleeping, try to stay hydrated, limit your caffeine intake in the afternoons, and make sure that your bedroom is dark and relaxing. Additionally, make sure that you are eating healthy foods and taking time to participate in some kind of physical activity on a regular basis.

One thing to watch out for is numbing activities. It may start out as a coping mechanism but beware of allowing numbing activities to distract you from dealing with your emotions. Common numbing activities are: overeating, alcohol or drug abuse, anger outbursts, excessive exercise, binge watching TV or movies, escaping into books to distract yourself, isolating yourself, shopping to feel better, or overworking to stay busy. While these activities may help you cope for a while, they only hit the pause button on your emotions. They won’t help you move toward reconciling to your loss and moving forward in a healthy way.

5. Allow others to walk alongside you.

You don’t have to walk this road alone. In fact, it will be much less stressful if you do accept help from others. You are going through an experience that is changing you in an irreversible way, and that’s not something you should have to process alone. Take your friends along with you on the hard journeys in life. They can’t carry your burdens for you, but they can help carry you along, and they can provide the support you need to move forward and find new life and new meaning.

Self-Care vs. Keeping Busy

It’s important to remember that self-care is not about “keeping busy.” It’s about taking care of yourself as you grieve and process a loss as it’s happening. Nationally respected grief expert Dr. Alan Wolfelt puts it this way: “Remember—self-care fortifies your long and challenging grief journey, a journey which leaves you profoundly affected and deeply changed. To be self-nurturing is to have the courage to pay attention to your needs. Above all, self-nurturing is about self-acceptance. When we recognize that self-care begins with ourselves, we no longer think of those around us as being totally responsible for our well-being. Healthy self-care forces us to mourn in ways that help us heal, and that is nurturing indeed.”

Caring for yourself will contribute to giving you the strength you need to face each new day with its unique challenges. So, take a relaxing bubble bath. Exercise. Talk with friends. Take walks. Stick to a daily schedule. Enjoy a healthy, revitalizing meal. No matter what you decide is best for you, be kind to yourself. It’s okay to have a bad day, and you don’t need to feel guilty when you have a good day. Being kind to yourself will help you reconcile with your loss and find a way to move forward each day, with enough energy to celebrate the successes and mourn the heartbreaks.