Taking Care of Yourself
Being your loved one’s caregiver is an act of love and generosity. As you take care of your loved one, remember to also take care of yourself. Here you will find information and resources for caregivers.
When considering hospice, you or your loved one may have questions about documents or available resources that can help with planning for the future.
Here are some helpful resources:
Life Care Planning, including the Advance Health Care Directive
Life Care Planning is Kaiser Permanente’s name for advance care planning. An important part of Life Care Planning is selecting someone to make health care decisions on your behalf in the event that you cannot communicate for yourself. We recommend all adults select a health care decision maker.
Wills and Trusts
The State Bar of California has helpful information on their website about wills, estate planning, and trusts, as well as a simple will form. Kaiser Permanente does not endorse any legal sites as replacement for individual legal consultation.
Family Caregiver Alliance is a community-based nonprofit organization addressing the needs of families and friends providing long-term care for loved ones at home.
Please talk with a hospice social worker as they may provide additional help with locating resources, assist with paperwork, and answer questions.
The Emotional Journey of Being a Caregiver
Being a caregiver for a loved one who is on hospice will likely take you on an emotional journey.
Caregiving can be exhausting emotionally, physically, and even spiritually. It is difficulty to experience the physical and mental decline of a loved one. It may be hard to watch your loved one have difficulty with daily activities that were once easy to do, like eating, talking, brushing their teeth or showering. Witnessing these struggles may make you wish you could do something to change the situation, but remember, you can’t do anything to change your loved one’s health. What you can do is be there for them, which is the best gift for your loved one. You are demonstrating your love through your very presence.
Being with someone you love as they get weaker or feel sicker may make you feel sad and helpless, and may cause symptoms of anticipatory grief. These are feelings of despair and sadness that may arise as your loved one is on hospice. Sadness, trouble concentrating, lack of appetite, difficulty sleeping and anxiousness or worry may all be symptoms of anticipatory grief.
At the same time, you may also have an awareness of the preciousness of your time together. Being able to provide care for someone you love is a gift of love for both you and your loved one. While bittersweet, you may feel blessed that you can keep them company and be with them during this precious time. During you this time, whenever possible we encourage you to have meaningful conversations and share what is important to you. Ask your loved one to share what is most important to them.
These two experiences — anticipatory grief and the gift of being there at the end of your loved one’s life — are part of the emotional journey for you and your loved one. If you feel comfortable doing so, share your feelings with a family member or the hospice social worker.
We encourage you to reach out for help if the hardship of taking care of a loved one feels too great or you need a break or need additional assistance. You may be able to get a break for a few hours by having a hospice volunteer spend time with your loved one while you go for a walk, get some fresh air, go to a movie, or do something nourishing or nurturing. You may also want to ask the hospice nurse for information about a home health aide to see if you can get help with daily activities.
Advocating for Your Loved One
As a caregiver, your loved one’s well-being is your main concern. Your loved one may rely on you to speak on their behalf as their advocate, so you have a very important role. If you have a question about your loved one’s care, your first points of contact should be the hospice care team’s nurse and social worker. These two team members can be reached by phone and will also visit the patient.
As your loved one’s voice, it’s important for you to proactively communicate their needs. You are their voice. Don’t wait for the nurse or social worker to notice if something is wrong. This is especially true when the problem may not be not easily seen, such as pain or loss of bowel control. Remember, you are never burdening the hospice care team or embarrassing your loved one by sharing information or asking for help.
Topics to communicate related to your loved one’s physical and mental condition are the following:
- new or worsening symptoms, like increasing pain
- difficulty carrying out the care plan
- difficulty in helping with daily tasks such as feeding, going to the bathroom, or bathing
- desire to talk about sensitive or emotional issues
- need for more care support
- any questions you or your loved one may have
Give clear, specific examples of what is going on or what you need, like “It seems like my mother needs more pain medication more frequently than she did before” or “It’s becoming very hard for me to lift my husband up from bed so he can use the bathroom.”
If you can, document your communication, take notes, and record the name of the person with whom you talked. Your main goal is to make sure your loved one, and you as a caregiver, get what is needed for care and support.
If the hospice nurse or social worker are unavailable and you need to talk to someone right away, call your local Kaiser Permanente hospice office or the after-hours number. Our Kaiser Permanente staff can answer your questions and connect you with needed services twenty-four hours a day, seven days a week.
You may have heard the term sandwich generation. It refers to adult children who are caring for both their children, as well as their aging or ailing parents.
Having overlapping priorities can be stressful. Many times, it means not being able to do something because of a competing priority. An example of this might be caring for your children — taking them to school, helping them with homework, grocery shopping, cooking, cleaning, bath time — as well as working at a job outside your home with its schedule and deadlines. When a parent gets sick, is aging, or is on hospice, they may likely need your help. The extent of your role is often based on how close you live, your other responsibilities, who else might be available to help care for your parent, and your relationship with them.
If you end up being the primary caregiver for a loved one on hospice, or are one of the key caregivers, you may experience sandwich generation tension. Although the feelings may seem insurmountable, you may be able to place some of your responsibilities on hold while you take care of your parent. For those who are employed, you may want to request a leave of absence from work, called the Family Medical Leave Act, or “FMLA,” if available. The hospice social worker can help you complete the FMLA paperwork.
It also helps to reach out for support. A close friend, family member, or spouse may be able to help with practical things, such as meal preparation, or school drop-offs and pick-ups. Sometimes people may want to help you, but don’t know how. We encourage you to ask for the help you need. Many people welcome the opportunity to walk alongside you during this challenging time. For more help juggling work, children, and caregiving, please speak with the hospice social worker. They welcome the opportunity to support you through this process.
As a caregiver, you may experience emotional, physical, and, sometimes, financial strain. We encourage you to read Caregiver Self-Care and reach out to others. It’s important to talk about how you are doing and to ask for help.
Self-Care: Handling Stress and Burnout
As a caregiver, you will likely spend a lot of time thinking about how you can help your loved one. It is challenging to care for others if you are not caring for yourself. It’s similar to the safety instructions you hear when boarding an airplane — you need to put on your oxygen mask first before helping others.
It’s important to know that feeling stressed or burned out is common. In fact, caregivers of all ages and backgrounds report issues such as not getting enough sleep, not able to rest when sick, skipping appointments, eating poorly, and not exercising. Caregivers often feel physically and mentally exhausted. They may juggle feelings of guilt and frustration around balancing their needs and those of their loved ones. No one will be able to anticipate how physically and emotionally exhausting it may be. Before you become so tired that you become impatient, or are slow to respond to requests, make sure you take little steps to take care of yourself. It also may help to forgive yourself for being a less-then-perfect caregiver. No one is the perfect caregiver.
Step one in taking care of yourself is to remember that if you become exhausted or sick, there is very little you can do for your loved one. That is why it is so important to give yourself permission to take care of yourself. Try to identify attitudes or beliefs you hold that are barriers to your self-care. For example, have you ever thought:
- If I am not there for my loved one every time they need me, no one will be there.
- If I take time away from caring for my loved one, people will judge me for it.
- What if something happens the minute I step away?
- If I ask for help, I am not a strong enough person, or may be burdening someone else.
Many caregivers frequently have these same erroneous thoughts. When a caregiver continuously tries to keep up with everything without caring for themselves, or tries to control situations that can’t be controlled, they may feel a sense of failure. This negative self-talk is defeating for both caregivers and for loved ones. It may help to remind yourself of the successes you have each day, such as “I did a good job helping my dad get to the bathroom” or “I sat with my Mom to read her favorite book.”
Working your way past these thoughts can be hard, but you can do it. Once you do, then you can take steps to care for yourself.
While this is very difficult given all you are facing, there are steps you can take. For example, you can:
- Identify what’s causing you stress. Is it the number of tasks to do? Your relationship with your loved one? Difficult conversations you are having or avoiding?
- Determine what is under your control. Many things that cause stress are out of our control, such as the progression of your loved one’s illness. Figuring out what things you can control, such as when to take breaks, identifying who can help you, or even how fast you breathe, are the best starting points for reducing stress.
- Take small steps towards change. Once you’ve identified the stressors under your control, what steps can you take to change them? Can you talk to a good friend once a week? Can you take a ten-minute walk? Can you convince a family member to help out, or reach out to the hospice care team for support?
- Surprisingly powerful, exercise can improve sleep, appetite control, concentration, and mood. This creates a “virtuous cycle,” meaning the more you exercise and improve other aspects of your health, the easier it becomes to continue exercising. Remember, exercise doesn’t mean you have to go to a gym for an hour. Taking a 20-minute walk, three times a week, can provide benefits.
- Prioritize quality time. Sometimes all the “tasks” leave no time for just sitting and holding hands, sharing memories, or asking your loved one how they are doing. Most people live with regrets that these important times were put off until it was too late. Order a pizza, leave the dishes undone, and just sit and visit when you can.
When caregivers get stressed, it is easy to get frustrated, irritable, or upset. This, in turn, causes caregivers to communicate poorly — often searching for someone or something to blame or criticize. While normal, it isn’t helpful. Here are suggestions to help you communicate in a constructive and productive way:
- Use “I” statements when discussing a problem. For example, instead of saying “you are so annoying. You say you’ll help me clean but you never do,” you can reframe it as “I feel really frustrated when you agree to help me clean, but you don’t follow through.”
- State facts before your interpretation. For example, instead of saying “Either you don’t care about me or you just don’t care because you’re always late to take your shift” you could say “I noticed you showed up 15 minutes after the time you told me you would arrive. When that happens and you don’t notify me ahead of time, it feels to me like you don’t care about my time.”
- Open up the conversation. After you tell someone what has happened and how you feel about it, directly ask them what their thoughts are. It’s important to make sure you give others a chance to share their own thoughts and feelings. Take time to listen.
- Remember, others may be feeling very stressed too, and may be more defensive or frustrated than usual. Take a moment to understand their perspective. It’s important to give yourself and others time to calm down if either person is feeling overwhelmed or upset. When emotions are running high, it is hard to have a productive conversation.
Ask for Help
As a caregiver for someone on hospice, know that you are never alone. You always have the Kaiser Permanente hospice care team as support. The hospice nurse and social worker are great resources who can help answer your questions or connect you with what you may need. In addition, you can:
- Ask friends and family to take a shift caring for your loved one.
- Ask friends and family members to do non-care related tasks, such running errands or cleaning.
- Join a support group. There are many free support groups, both online and in-person.
- Talk with your own doctor about taking care of your stress or any physical effects you are experiencing from being a caregiver.
- Consider hiring a caregiver. You can learn more by using the resources provided by the hospice care team nurse or social worker.
Being a caregiver for someone on hospice is challenging. Try to use the three steps above — reducing stress, communicating positively, and asking for help — to move forward. Caregiving, despite how difficult it may be, is ultimately a great gift that allows you to be with the one you love when they need you most.
Anger and Resentment
Being a caregiver can be emotionally difficult. Caregivers often juggle thoughts and worries about a loved one, the logistics and physical toll of daily caregiving, and life responsibilities outside of caregiving. Going through all of this can lead to many emotions. Some of the emotions may be uncomfortable to experience, like anger, anxiety, guilt, or resentment. A caregiver may wonder if others will judge them for having those feelings, or they may question whether having those feelings is a sign they aren’t doing a good job for their loved one. This is not the case, the truth is caregiving is hard work.
The first thing to know about having negative thoughts or feelings is that they are completely normal. Refusing to accept or acknowledge challenging feelings can make it harder for you to cope and may lead you to bottle up your emotions. Accepting your feelings is a step toward managing them in a healthy and productive way. You may want to talk about your feelings with someone like the hospice social worker or a family member.
What are some of the thoughts or feelings you might experience?
Anger: At times, caregivers may feel anger or frustration. It can be easy to feel on edge when there are so many tasks and possibilities for mistakes. Caregivers whose loved ones suffer from dementia or drug side effects can feel angry that their loved ones can’t acknowledge or appreciate their efforts.
It is important to forgive yourself. Realize it is okay to feel angry. There are some effective strategies to help you cope. Are you able to briefly step away from the situation to calm yourself? Would it help to take a walk or to take a few slow deep breaths? Are there supportive people you can talk with to just vent and get your thoughts off your chest? Releasing your feelings can be the best way to let things go and allow you to move into an easier frame of mind. It may help to speak about your feelings with the hospice social worker, or you may want to talk through the situation directly with whomever is involved.
Resentment: Caregivers work incredibly hard. Some caregivers find themselves doing work that seems to have come from out of the blue. Their work may feel unrecognized, or may seem to be consistently ignored by others that they feel should also be helping. These situations may cause you to feel resentful. When you feel overwhelmed, small things that under normal circumstances would be easy to handle, may suddenly become a big deal.
For many people family dynamics or dysfunctions get worse at times of crisis. In the movies, families come together at the illness and death of a loved one, but in real life, most people resort to old habits, and tensions resurface or worsen. The family member who always steps up ends up giving a lot of time and effort; the one who escapes when they have hard feelings may not come around as much as you need or would like them to. Try to remember that each person is reacting to their own strong feelings; try not to hold grudges or have expectations about others.
One of the best ways to handle resentment is to gently address family dynamics that may be causing it. While it may be difficult to do, holding a family meeting to have members constructively air their thoughts and feelings can help to resolve issues. Using the time to search for solutions and compromises, rather than to assign blame, is key. If family members still seem unwilling to help or change, it may help to cast a wider net for needed support, looking to friends, neighbors, the hospice care team, or hired professionals.
Depending on your family, you might benefit by specifically asking family members for what is needed for caregiving duties. At times, you may need to be assertive in setting clear limits or clarifying each person’s role in helping with care. Remember, advocating for your or the patient’s needs does not make you rude or burdensome – it’s what is needed during this time.
It can also help to try to reframe situations that search for the silver lining. For example, if you are resentful that other family members are uninvolved while you are doing much of the caregiving, it may be helpful to reflect upon the fact that you are getting extra time with your loved one. This is precious time you have with your loved one during a very vulnerable and important time. Please remember to reach out to talk to someone if you want to express your feelings, or if you want to get help handling a difficult family situation.