christy.kessler

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 this type of care once per benefit period. Under special circumstances, you might be able to receive additional respite 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 “4 Places Where You Can 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 care, the best thing to do is talk to your hospice care team. They will help you prearrange dates for respite 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.

If you or a loved one have been dealing with an illness for a while, the words “hospice care” may strike your heart with fear and sadness. You may feel overwhelmed or out of your element as you hear new terms and definitions, but that’s okay. Take a deep breath. You will learn what you need to know.

To help you get started, we’re going to discuss the four main places hospice care is provided, so you know what the options are and can discuss them with your hospice care team.

The Purpose of Hospice Care

Before we begin, it’s important to realize that the hospice team is designed to support and guide the family as they care for a loved one during his or her final days. Family members (and friends) are the main source of care for the patient at home, but the hospice staff is available to help with additional care needs, including pain management and symptom relief. The ultimate goal of hospice care is to allow a person to die comfortably and with dignity at home, surrounded by people they love.

Now, let’s get started.

4 Places Where You Can Receive Hospice Care

Every hospice program is designed to give you access to a team of care professionals 24 hours a day, 7 days a week, no matter where that care is provided.

In general, care is provided at your “home,” wherever that home may be. However, as your specific needs and the severity of symptoms change, the place of care may change as well. Your hospice care team can help you determine which place may be the best option for your current health situation.

To learn more about the four levels of care that hospice provides and how each level may affect where you or a loved one receive care, make sure to read “Do You Know the Four Levels of Hospice Care?”

With that said, let’s talk about where you can receive hospice care.

1. At a Personal Residence

The most common place to receive hospice care is at a personal residence. This may mean a house, apartment, duplex, townhome, condo, etc. The hospice care team – made up of medical professionals, aides, and volunteers – will drop by for scheduled visits to check on the patient’s condition.

Most often, the hospice care team does not provide around-the-clock supervision – that responsibility falls on the family – but when needed, a hospice care member may stay for longer visits or even overnight.

2. At an Assisted Living or Nursing Home Facility

For some people, home may be an assisted living facility or nursing home. In this case, the facility may have specially trained nursing staff to care for hospice patients. Alternatively, they might decide to partner with a hospice provider in the area. For terminally ill patients who don’t have someone to care for them at home, an assisted living or nursing home facility is a good option.

A Quick Note Before We Move On

With hospice care, the primary goal is to allow a person to receive care in their own home. However, there are times when care at home isn’t enough. For these cases, you can receive hospice care at the following places instead.

 3. At an Independent Hospice Facility

In some cases, your hospice provider may have its own independent facility or “hospice house.” With its home-like atmosphere, a hospice house provides a comfortable place for in-patient, short-term stays when a patient needs around-the-clock care and supervision.

For the most part, a patient may stay at a hospice house if their symptoms have worsened and cannot be managed at home or they have requested respite care to give family members a break.

4. At the Hospital

At times, it may be necessary to receive hospice care while at the hospital. Depending on how the hospital has it set up, the patient may receive care:

• In a special hospice unit
• From a hospice team that visits patients on any nursing unit, or
• The medical staff at the patient’s current unit will act as the hospice team

Like a hospice house, there are two main reasons a person may receive hospice care at a hospital.

• Either pain and symptoms have progressed to the point of becoming unmanageable at home, or
• The family has coordinated respite care for a few days

The patient will return to at-home hospice care after respite care is complete or they feel comfortable enough to return home.

Remember…

Remember that you should always consult your insurance provider before making a change to the place of care. Most hospice benefits do not usually cover the cost of housing a patient in a nursing home or assisted living facility (also known as daily room and board costs), but these costs may be covered by traditional Medicare benefits or other benefits you have.

Hopefully you now have a better understanding of your options and can confidently converse with your hospice care team about your needs as they change.

On the hospice journey, every person’s life situation and illness are different. One person may have a large family that will split care duties, while another person may have one child and a close friend available to help. For one person, a terminal illness may manifest quickly while the same illness takes longer in another person.

Because situations are varied and could change at any time, Medicare (which covers the largest majority of hospice care expenses) requires that hospice care providers offer four levels of service. You may start the day at one level and be at another level later in the day as needs change, and that’s okay. Hospice programs are equipped to pivot and adjust quickly as things change.

Today, we’ll review the four levels (or “kinds”) of hospice care that are available to families.

1. Routine or Intermittent Home Care

More than likely, it is routine or intermittent home care that comes to mind when you think of hospice. With this level of care, nurses, aides, or therapists stop by the home for short, regularly scheduled visits. These visits are focused on pain management, symptom management, emotional and spiritual counseling for the patient and family, assistance with daily tasks, nutritional services, and therapeutic services.

Routine care takes place wherever the patient calls home. This could mean a residence, a skilled nursing facility, or an assisted living facility, to name a few options. Also, while visits are routine, if your family needs additional help, there’s a nurse on-call 24 hours a day.

2. Continuous Care

With continuous care (or crisis care), a hospice patient will receive nursing assistance for several hours at a time, or even overnight, during a time of medical crisis or intense symptoms. If the patient’s symptoms are severe, they will need more focused and frequent care, so the hospice worker will stay for longer periods of time.

If death is imminent, the hospice nurse may stay overnight or offer whatever support they can to the family. This type of round-the-clock nursing allows family caregivers the opportunity to step back from hands-on care and focus on simply being with their loved one.

3. In-patient Care

While it’s most common to receive hospice care at home, sometimes home nursing isn’t enough. If symptoms intensify or it’s become impossible to manage pain or symptoms at home, a hospice patient may receive in-patient care at a hospital, nursing home of their choice, or independent hospice facility (also called a “hospice house”).

The goal of in-patient care is to help a patient become stable enough that they can return home again. However, in some cases, the person chooses to spend their final days at the in-patient care facility rather than return home.

If the medical need that leads to in-patient care is related to a hospice diagnosis, your insurance’s hospice benefit will likely continue to pay the bills. With an unrelated medical issue, contact your insurance company to discuss what’s covered in your policy.

4. Respite Care

For caregiving family members, a terminally ill loved one’s physical needs can be demanding. To give family caregivers an occasional break, hospice providers offer in-patient respite care.

With respite care, the hospice patient is checked into a 24-hour personal care home. While there, the patient will receive round-the-clock care for up to 5 days. After 5 days, the patient returns home to receive either routine care or continuous care (as needed).

Though this level of care isn’t necessary for every family, it is available and covered by Medicare. Also, if your family needs respite care more than once, that’s fine, too. Just coordinate with your hospice team.

Who Determines Which Level of Care is Appropriate?

When you start using the services of a hospice provider, the hospice physician and nursing team will complete an assessment to determine which level of care is appropriate at that time. As symptoms change, the hospice medical personnel can keep tabs on the hospice patient’s status. They can adjust levels of care as needed.

However, don’t think you have to wait on the doctors to take notice. If you see a need to update your level of care, don’t be afraid to ask. Be proactive and talk to your hospice team about updating your care routine.

If you have more questions about the four levels, contact a local hospice provider and start getting answers. While there may be four “levels,” the best part is that no matter which level of care you or a loved one receive, the hospice philosophy will not change: to provide expert medical care and emotional support that respects the unique wishes of the patient. From the moment you begin a hospice care program, your family will be in good hands.