Taking Care of Yourself

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.

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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.

Reduce Stress

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.

Communicate Positively

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.

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