Guide for Home Hospice Caregivers

HOSPICE CARE ESSENTIALS

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What kind of home hospice caregiver are you? Did you volunteer when you found out your loved one had a life-limiting illness? Did you get the job because there was no one else available? Do you feel overwhelmed and unable to cope? Do you feel hopeful that you can make your loved one comfortable in his or her final months, weeks, or days?

Home hospice is an important time for families. It’s a chance to make the most of the opportunities left -- to finish unfinished business, to say the final goodbye to someone you love. A practical caregiver is an educated caregiver. The more you know and understand about home hospice care, the better the care you will give. Why? You will understand that you cannot make your loved one better, but you can make him or her feel better. Comfort is the key to success in home hospice care.

When families work together to provide home hospice care, it can be extremely rewarding and bonding. A cooperative effort can help your loved one to prepare for his or her final journey with a sense of peace and sometimes even relief that the long, hard struggle is ending. 

Home hospice care is different from other kinds of home care. If you have been the family caregiver for your loved one, you’ve probably spent a lot of time running back and forth to doctors’ offices or the hospital. Now it’s likely that your loved one will spend the final days at home, in familiar surroundings. There will be people coming to the house to help care for your loved one. The hospice team will work to manage any of the pain or discomfort as your loved one moves closer to death. The effort is directed at making your loved one as comfortable as possible. Some things are inevitable as the body begins to break down, and these issues will be addressed by the home hospice team. In most cases, you will be doing a lot of the physical work in caring for your loved one, and the hospice team will help you to understand the stages as your loved one moves through them. Hospice programs have social workers, chaplains, and volunteers to help you. The stress of caring for a loved one in hospice can sometimes feel overwhelming, and it’s important that you work with the hospice team to get the kind of support you need to do the job.

CAREGIVER’S TIP – DON’T DESPAIR

Some family caregivers can find the challenges of home hospice care to be nearly impossible, especially if there aren’t a lot of family members, friends, or neighbors available to help, or if the physical demands of caregiving are more than they feel they can provide. It’s important to be creative in finding the kinds of resources that can help you get through it.

HOME HOSPICE CHANGES EVERYTHING

Experienced caregivers sometimes have difficulty transitioning into home hospice care. When you are used to providing care that is directed towards a cure, towards preventing problems, it can be hard to realize and accept that your loved one’s body is beginning to break down. You may find that some medications and treatments that you used to provide for your loved one are no longer being used. You may find your loved one is no longer interested in eating, and it can be tough to accept that fact. Home hospice care is often a very emotional experience. It is a time of uncertainty, doubt, and worry for many families. The better you understand what your role is as a home hospice caregiver, the better able you will be to meet the challenges of making your loved one as comfortable as possible at the end of life.

Comfort is more than just a body without pain. It is a mind that no longer worries that family life will change for the worse after death or that death will be physically painful. It is a heart that is not heavy with grief or anger because life is ending with so much left to do and not enough time or energy to do it. A practical home hospice caregiver learns that helping a loved one find peace at the end of life is all about empowerment. Listen to your loved one -- understand what is important to him or her. How should the last months, weeks, and days be spent? What is on that “to do” list, and how can you help him or her get as much done, even as the body begins to deteriorate?

Home hospice care is all about adapting your care to meet the rapidly changing needs of your loved one.

PRACTICAL HOME HOSPICE CAREGIVER SKILLS:

1. ORGANIZE YOUR HOME HOSPICE CAREGIVING

2. RECOGNIZE THE HUMAN NEEDS AT THE END OF LIFE

3. REALIZE THE NEED TO INCLUDE FAMILY AND FRIENDS IN THE CARE PLAN

4. MINIMIZE THE GROWING WEAKNESSES

5. MAXIMIZE CONTINUED STRENGTHS

6. UTILIZE HOSPICE RESOURCES AND EDUCATION

CAREGIVER TIP – DIRECT THE HOME HOSPICE EXPERIENCE TO BENEFIT YOUR LOVED ONE
A practical home hospice caregiver understands that time is growing short. Flexibility and adaptability are critical in meeting the needs of a dying loved one. Always ask yourself one question when you are making a decision that affects your loved one – “Will I regret doing or not doing this down the road?”

Home Hospice Caregiver Command Central

In order to focus your home hospice caregiving, you will need to create your Caregiver Command Central. This is where you organize and store all things related to the care you provide.

PHYSICAL RECORDS KEEPING

You need one central location to keep all of the printed information on your loved one’s medical, financial, insurance, and personal issues that you will be handling.

For many patients, hospice care and insurance coverage is very different than “cure care”. Check with your hospice team, so that you understand what is changing.

Use a file folder, file box, or file cabinet for this and keep it in one location. In an emergency, when you need to grab important papers to take with you to the hospital, you don’t want to waste time and energy looking for it. As time goes on, especially if your loved one’s health deteriorates, this becomes the official record of what occurs, and you will need to be able to access the information. Sometimes unexpected situations occur down the road – being able to review dates or procedures can be helpful.

ELECTRONIC RECORDS KEEPING

You may also want to create an electronic file on your computer for important information. (You may choose to take advantage of some of the many programs and apps available to caregivers that help them get medications organized. The costs vary for these, as do the features.)

Many hospice patients have limited activities outside the home. Your loved one may no longer go out for medical appointments, or may have a hospice physician or nurse make house calls when needed. At this point in time, it’s likely that the hospice program your loved one is in will take over the electronic records keeping. You may wish to share whatever records you have, so that the information the hospice team has is as up-to-date as possible.

Does that mean you will no longer track anything electronically? No. One of the biggest responsibilities for family caregivers is medication management, and there are several options for tracking electronically, from software to phone apps.

There may also be some issues that will surface after your loved one's death. Having an electronic record of what happened during hospice may be helpful.

CAREGIVER TIP – START (OR RESTART) YOURSELF OFF ON THE RIGHT FOOT

If you don’t already have one, take the time to set up your command center. Hospice caregiving sometimes moves very quickly, and errors can occur when things get hectic or disorganized. You will need to have an organized base for your caregiving in order to track your loved one’s medications, treatments, and any hospice team directions. It doesn’t have to be a big command center, with doodads and geegads. It does have to work for you, so that you can stay focused on providing the best hospice care to your loved one that you can.

Organizing Home Life Structure

If you are new to the hospice situation, it’s important for you not only to understand your loved one’s needs for care, but the benefits of having a caregiver structure. The worst thing in the world that a well-meaning caregiver can do is to micromanage the hospice setting. Every human being needs to feel that life is worth living, even if that means making more of an effort. This is especially true in hospice care. Time is growing short. There are often unmet needs and unfulfilled dreams. It’s important to recognize that hospice care changes everything.

1. NEEDS – You are the official care assistant.

Make a list of the things your loved one needs to do to prepare for death. Discuss this. Take the time to observe your loved one. When it becomes emotionally overwhelming, take a step back. When he or she seems interested in sharing final wishes, thoughts, and directives, be there to record instructions. If your loved one is physically uncomfortable, work with the hospice team to change it for the better.

2. STRENGTHS – You are the official skills optimizer.

Make a list of the things your loved one can do by himself or herself at this moment in time. These can be used to maintain a sense of self-worth in your loved one, even during hospice. The more you encourage the use of these strengths, the less dependent your loved one will feel upon you. Everyone wants to feel like a contributor, not a burden. (Remember that things can change and you may need to adapt tools and assistance to meet these needs.) Find ways to enable him or her to continue achieving. Let your loved one's voice be heard, whether it's to impart wisdom to the family or share stories of days gone by. Ask if you can record the conversations, either with audio or video, or write them down.

3. ACTIVITIES – You are the official social coordinator.

Many hospice patients can still participate in activities, so consider what is possible for your loved one. You may still get together for family gatherings, but keep it simple. Friends and neighbors may still come by, if your loved one agrees. If family members are having a hard time coping with their emotions, talk to your hospice team. There are social workers and bereavement counselors available to help any family member who needs it, even before your loved one dies. Remember that everyone's goal is to make your loved one as comfortable as possible. People who are having trouble managing their emotions may wish to use alternative means of communication, sending cards and letters to show their support. In some cases, children and/or your loved one may not mutually benefit from visits, but certainly there are ways that children can share the love they feel, through drawings and other special projects that can be shared with your loved one.

It's important to note that each hospice patient is different. Noise can trigger distress for hospice patients -- whether it's a scary movie on the TV, a barking dog, or a loud visitor of any age. Always pay attention to the needs of your loved one and make his or her comfort your priority. Even while sleeping, your loved one can hear what's going on in the hospice room. Loud conversations or rowdy music can disrupt your loved one's rest, even when no one thinks it matters.

4. ROUTINES –You are the official domestic routines coordinator.

Make a list of the routines you need help doing. Routines are done on a regular basis. Is it mowing the lawn, doing household chores or taking out the garbage? Will you need to hire someone, call upon a family member or friend, or do it yourself? Don't stretch yourself too thin during hospice caregiving. Use your resources to get things done. And don't be afraid to ask a family member to take over the responsibility of managing the household responsibilities when you need to focus on hospice caregiving. That's what a team is for -- to get it all done right.

5. SCHEDULES – You are the official schedule coordinator.
 
Make a list of the schedule your loved one normally keeps. What time does he or she usually get up? What time does he or she normally go to bed? When are meals usually eaten? One important thing caregivers need to understand is that their loved ones usually have an established schedule. When you are being treated for an illness or disorder, schedules can often be disrupted. This can create a sense of chaos for your loved one. By following his or her normal schedule, you can help bring focus and a sense of normalcy back to the family. You won’t always be able to do things on schedule, but understanding it can be very helpful for everyone.

Caregiver Support Team

What is your caregiver support team? This is a critical issue for you to understand because your caregiver support team help you avoid some of the biggest pitfalls of taking care of a loved one. Stress, depression, and physical neglect can take its toll on family caregivers. The better you understand your responsibility to take good care of yourself, the better the care you will provide to your loved one. You need to be able to focus, to manage crises that arise, and to meet the constantly changing demands of caregiving. You will need:

1. PHYSICAL SUPPORT – You need help to get it all done.

You should never do hospice caregiving all by yourself. You need to know who you can call on for those times you need help providing care. Make a list of the people you can count on, what they can provide, and what their strengths are. There may be some people who are good at visiting your loved one when you want to pop out to the store for a few things. There may be others who are willing to be involved in regularly helping you with your loved one. And remember to respect your loved one's needs when arranging for people to sit with him or her. Let the needs of the hospice patient be respected.

2. EMOTIONAL SUPPORT – You need a shoulder or two to cry on.

You will need emotional support during your time as a hospice caregiver, and the harder the challenges you face, the greater the need for quality support. You need good people who can help you troubleshoot issues and find realistic solutions for problems. Avoid pessimistic people for your support team. Consider people who have walked in your shoes as family caregivers. It's especially important for you to reach out to your inner circle, so you feel connected to life.

3. FINANCIAL/WORK SUPPORT – You need help balancing out the realities of caregiving.

If you are still working full-time when you take on the care of your loved one, you will need to work out the challenges of sometimes being in two places at once. When your loved one’s needs require you to scale back your job to take on full-time caregiver duties, how will you manage the financial burdens of caring for your loved one? Some families provide a stipend to family members providing care, to help cover the loss of wages. Caregivers still need to have medical and other insurances, but in some cases, it’s possible to downsize temporarily while being a family caregiver. Make a list of your financial needs, ways to adjust them to fit the caregiver situation, and ways that you can eliminate unnecessary costs.

Some people are able to work from home, and this can be an especially appealing choice during hospice. If your loved one is resting comfortably, you may be able get things done with a virtual office. You may be able to schedule video conferences or conference calls (in another room, to avoid disturbing your loved one). In that case, you may wish to ask a family member, friend, neighbor, or a paid companion to sit with your loved one while you handle your duties from your virtual office.

You may choose to take a leave of absence from work (if you have that option) in order to spend time with your loved one before that final good-bye. Some people are able to use their vacation time to cover some of their absence from work.

If you are having a difficult time juggling work and hospice care, it's sometimes possible to partner with other family members, friends, and neighbors to provide coverage. You may also hire a trained health care aide to be with your loved one during certain hours, if you can afford this. A team approach can help you overcome some of the obstacles in juggling work and hospice.

4. RESPITE CARE SUPPORT – Taking time for you is NOT optional.

Hospice caregivers need to understand and appreciate the critical need for respite care for themselves. When you take time off from your caregiving, you are recharging your batteries. You should never feel guilty. You are at a very emotional time in your life and you need some space from the hospice situation to compose yourself. Make a list of family members, friends, and neighbors you can call upon. Your hospice program has trained volunteers who can sit with your loved one, but you must request this service. If you can afford it, there may be times that you utilize paid home health aides to care for your loved one. It helps to stay fairly close to home when your loved one seems particularly frail, but there are still activities you can engage in to relieve the stress of hospice care. Go to the local gym, take a long walk in a local park, meet a friend for coffee and comfort -- just leave a phone number where you can be reached in an emergency. You'll feel better knowing that you can be there quickly if there's a problem.

CAREGIVER TIP – YOU NEED TO MAKE IT WORK FOR YOU AND YOU ALONE

This is your support team, your choice. It’s just for you. Pick the people you think are most likely to help. Recognize what each person can do for you. During hospice care, more than at any other time, you need to have people to share your emotions with, so emails, cards, letters, and calls are important tools that can help you feel connected to life as you watch your loved one moving towards death. You may not be able to leave the home whenever you want, so beef up your connections to the outside world in virtual ways. Help yourself not to feel so alone.


Organizing Medical Care in Home Hospice

The first thing any caregiver benefits from is to review the loved one’s health situation. Assess the needs of your loved one, so that you can begin to develop strategies to help your loved one get the best medical care available. In home hospice, the hospice team will come to the home, usually on an as-needed basis. The hospice team will rely on you to provide accurate observations and information on your loved one’s condition.
 
1. MEDICATIONS – You are the official pharmacy assistant.

In hospice, the hospice team will provide the medications you will need to keep your loved one as comfortable as possible. Many of these drugs are very powerful – some are controlled substances, such as morphine. Medication management is important in hospice caregiving. You need to understand the drugs you are providing, the dosages, and the times to give the medications. Some medicines are time-release or slow-acting. Some are quick-release and short-acting. Sitting down with your hospice team and going over each medication and how it works can help you avoid making critical mistakes.

2. MEDICAL HISTORY – You are the official medical coordinator. 

Generally speaking, by the time your loved one needs hospice care, there is significant reason to believe that cure is no longer an option. The hospice team may ask you for information on your loved one’s medical history during the initial visit. If you have records, you can share these. But once your loved one begins hospice care, his or her medical history may not play a role in hospice care, unless it creates a complication. You will be expected to update the hospice team on any issues or physical conditions as they occur, in order to address them in the most effective manner possible, to insure your loved one's comfort.

3. IDENTIFICATION AND INSURANCES – You are the official chief information officer.

By the time your loved one needs hospice care, he or she also usually needs a full-time caregiver. Generally speaking, your loved one will be treated only for complications that cause discomfort or distress. Keep your loved one’s identification card and insurance information in your command center. You may also want to keep copies in your wallet. In an emergency, this can be important. Some hospice patients occasionally need emergency hospital care. Check with your hospice team before you call 911. This is especially important if your loved one has a Do Not Resuscitate order. Remember, you’re not trying to cure your loved one’s illness any more. But occasionally, things happen and your loved one needs medical attention. For example, if there is an infection, your loved one may be treated with antibiotics. This doesn’t change the fact that your loved one is still moving towards death, nor will it prevent the natural course of death from occurring, but it may make your loved one feel more comfortable. In some cases, lab tests may be ordered. Some tests require your loved one to prepare ahead of time. Many medical laboratories have technicians that will come to the house to test your loved one. Be sure you understand all instructions, including any regarding fasting, taking required dyes, and medications. If you have questions, always call the laboratory or physician’s office to double-check.
 
4. NUTRITION AND DIET – You are the official nutrition coordinator.

If you are a long-time family caregiver, you will see some very big changes when your loved one enters a hospice program. His or her appetite is likely to change significantly. Discuss this with the hospice team, so that you understand these changes. Make a list of all nutritional information that is important for your loved one. What kinds of foods will be palatable to your loved one? When should you worry that your loved one is not eating? Some medications must be taken with food and if your loved one is not eating, it can create serious problems. Your hospice team will tell you what to do in these circumstances. 

Please note – food can be an issue that creates power struggles between patient and caregiver if it’s not properly addressed. Some hospice caregivers insist that a loved one eat, no matter what. Your job is to meet the real needs of your loved one. Dying patients lose their appetites because their bodies are breaking down as they move towards death. Their bodies can no longer process food successfully. Always seek nutritional advice from medical professionals, dietitians, and nutritionists on how best to help your loved one. If you find yourself upset by your loved one’s refusal to eat, talk to your hospice team. You need support and education to handle the stress that can result from the realization that your loved one is no longer interested in eating because he or she is dying.

CAREGIVER TIP – ORGANIZED HOME HOSPICE CARE IS SMART CARE 

Home hospice care is often very stressful, because things can constantly change. Your loved one may have good days and bad days. Take note of what you need to do. Don’t neglect the emotional and mental aspects of home hospice care. Ask yourself what’s more important at that moment in time -- to take care of the physical responsibilities or to emotionally connect with your loved one. Why not sit down with a cup of coffee or tea and relax for a few minutes with your loved one? When you really need to take care of physical responsibilities, you may ask a family member to sit with your loved one. Hospice care is comfort care and just having someone there can sometimes be reassuring to your loved one.


What you can expect when you provide end-of-life care:

-- You are likely to provide and/or coordinate around-the-clock caregiving
-- Hospice team comes to the home to provide treatment and to instruct you in care
-- You, as the family caregiver, work with the hospice team
-- This is a very emotional time for family and friends
-- Directed comfort care and pain management can ease suffering for your loved one
-- There are often rapid physical changes, and medical treatment is likely to change with each
-- Rest is important for your loved one and you may see a significant increase in sleeping
 
CAREGIVER TIP – COMFORT AND COMPASSION HELP YOUR LOVED ONE FIND PEACE AT THE END OF LIFE

Home hospice care is often very stressful, because things can constantly change. Your loved one may have good days and bad days. Take note of what you need to do. Don’t neglect the emotional and mental aspects of home hospice care. Ask yourself what’s more important at that moment in time -- to take care of the physical responsibilities or to emotionally connect with your loved one. Why not sit down with a cup of coffee or tea and relax for a few minutes with your loved one? When you really need to take care of physical responsibilities, you may ask a family member to sit with your loved one. Hospice care is comfort care and just having someone there can sometimes be reassuring to your loved one. 

Copyright Sara M. Barton 2013
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