CAREGIVERS
Caregivers are physically, mentally, emotionally and spiritually affected by their loved one's chronic illness and road to recovery. Throughout the transplant process, caregivers’ needs, health and well-being may be overlooked when patient issues take precedence as the main focus.
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Here are some useful tips to help you balance your self-care while caring for your loved one. Also, some caregiver resources are listed below:
TAKE CARE OF YOURSELF
Stay hydrated, eat healthy, get adequate sleep and exercise when you can. Don't neglect your own health. It's essential to take time for yourself each day, to socialize and do the things you enjoy. Be kind to yourself and do nice things for yourself- grab a coffee, go for a walk outside, get a relaxing massage. Accept your emotions and learn to recognize when you need to take a break.
REACH OUT
Join our support groups to connect with others going through similar experiences. It's helpful
to hear from other caregivers who have been on this transplant journey. To share experience, offer support and hope. Friendships can form here. Seek therapy- the patient isn't the only one going through trauma. Yours is different to theirs yet equally valid.
ONE STEP AT A TIME
One obstacle at a time. Focus on the things you can control, because so much is out of our control and things can change very quickly. Take notes, ask questions, talk to your loved one's health care provider to relieve anxiety and plan for the future. Learn to pause, take deep breaths when you're feeling overwhelmed. Reflect through prayer or meditation. Be present and make the most of each moment with your loved one. Hold tight to the victories, setbacks are mere road bumps today.
ACCEPT HELP
Don't be afraid to ask for help, and be specific about what you need. Let people care for you- keep an open line of communication with family, friends, your community, co-workers and fellow caregivers in our support groups. For instance, someone might offer to pick up groceries or cook a meal for you. You don't have to go it alone. Caregiver burnout is real. When we ask for help we are being of service, because we allow another person to be their best self.
CAREGIVER RESOURCES:
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Respite care - Provides short-term relief for caregivers. Most communities have some type of respite care available, such as: in-home respite, adult care centers, short-term assisted living and day hospitals. To get started, contact your local Area Agency on Aging (AAA) to learn about services in your community. California residents can start here.
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How to pay for home health care - Call your loved one's insurance provider or check your benefits package to see if they cover in-home care. Costs of home care depends on what services you use. Medicare and Medicaid/Medi-Cal companies will cover some of the costs of home health care. To find out if you are eligible for home health services:
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Medicare​
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Medi-Cal (if located outside of California, contact your closest Medicaid office)
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If you have Medi-Cal, you may qualify for IHSS (In-Home Supportive Services). Apply here.
​Remember - Transplant centers have social workers, case managers and financial coordinators who can help you with the financial details of your loved one's transplant. Your medical care team is there to assist you and prepare you for what's to come. Contact them anytime you have a question or need assistance. If your patient's medical condition or insurance coverage changes, notify your assigned transplant coordinator right away.
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Advance Care Planning (ACP) for patients with cirrhosis - Patients with cirrhosis often encounter difficult and complex medical decisions and may experience complications, such as hepatic encephalopathy (HE), that impair their ability to participate in decision-making. It is vital for the patient to identify an appropriate surrogate decision maker (in the outpatient setting early in the disease, if possible) and involve this person throughout the process. Filling out an advance directive, writing a will, and sharing access to bank accounts, email, etc. with this trusted person is essential.
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Prepare a phone/email tree - It's helpful to set up an efficient way to provide updates to friends and family on the progress of your loved one's surgery and recovery.
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Useful equipment and supplies to have at home - A blood pressure monitor, a reliable thermometer, pulse oximeter, weekly pill organizer and travel pill case, medical alert ID bracelet or necklace (for patient to wear- provides vital medical information in an emergency), updated medication list, walker, wheelchair, shower stool (if necessary), an intercom system, hand sanitizer, disposable face masks, disposable gloves. *Post-transplant patients may be discharged to home with a walker, blood pressure monitor and weekly pill organizer.
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How to find a therapist (for patients & caregivers) - Some options to consider:​
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​Ask your primary care physician for a referral.
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Contact your insurance directly and ask for a list of "in-network providers" - For Medi-Cal patients, contact the ACCESS Center at: 1 (800) 854-7771 (Option/Extension 1) for assistance with screenings, assessments and referrals to counseling.
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Consider searching online: Psychology Today, BetterHelp, Talkspace, to name a few.
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Ask your friends, family members, social worker, fellow caregivers- sometimes it's helpful to ask around to find a provider that would be a good fit for you.​​​
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