Caring for a Loved One with an LVAD: What to Know
If your loved one decides to get an LVAD, it will mean big changes in both of your lives.
Your loved one will need a lot of help from you with daily activities in the first few weeks after they return home. Even after that, caregivers continue to help with things like cleaning the driveline site and managing medical appointments.
Caregiving may get easier over time as your loved one feels better and develops more independence. You may also find it gets easier as you and your loved one to adjust to new routines with an LVAD. But there will also be new challenges. For example, most people with an LVAD have to return to the hospital within the first year after surgery because of medical complications.
We can’t tell you exactly what life with an LVAD will be like, because it’s different for every patient. But we can share advice based on the experiences of other caregivers.
Learn and Engage
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Read the other parts of this website to learn what to expect during LVAD surgery and recovery, and after your loved one comes home.
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Attend as many doctor visits as you can with your loved one.
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Build a good relationship with your doctors and your LVAD team. They are there for you and they understand the difficulties you might face.
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Ask your healthcare team questions and work with them to set up timelines and goals for your loved one’s improvement.
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Learn as much as you can about how the LVAD works.
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Talk with staff at places like your local energy company, local clinics, and doctors offices that might not be familiar with the LVAD. Their services – or lack of services – could affect you in an emergency. If needed, plan ahead for alternatives.
Get Support
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You’ll probably need help from a backup caregiver at some point. Arrange this backup support well before you need it.
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If you have children, involve them in caregiving in ways that work for you and your family.
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Some caregivers and patients find that communities of faith and prayer provide comfort, hope, and support.
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Find online or local support groups for LVAD caregivers. There are many active ones.
Pay Attention to Your Own Needs, Too
You can provide the best care for your loved one when you take care of yourself, too. Here are some ways to do that.
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You might experience mixed emotions as a caregiver. You may feel grateful for more time with your loved one while also feeling stress, fatigue, resentment, and frustration. Prepare now for times that you feel negative emotions. Think about how you can handle these feelings. For example, “When I start to feel overwhelmed, I will give myself some quiet time or read something inspiring.”
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Give yourself time and space to vent your emotions instead of letting them build up.
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Make time for your own hobbies and interests. Even a quick, simple activity can make a real difference. For one caregiver, going to garage sales and getting a coffee and doughnut every Saturday morning was welcome time to herself.
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If necessary, talk to your employer about taking time off or working from home.
Focus on the Big Picture
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Many caregivers say they are motivated by reminding themselves about their loved one’s reasons for getting an LVAD.
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Sometimes it helps to accept that your life has changed. Things won’t go back to how they were before your loved one received an LVAD. Accepting that changes are a part of life with the LVAD helps you prepare for them.
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Remember that your loved one’s mood and behavior don’t always reflect his or her feelings about you. People with an LVAD might be in pain or discomfort. Or they might feel stressed, guilty, anxious, or self-conscious about their body and appearance. All of this can affect how they act toward others.
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Some caregivers say their biggest message for other caregivers is not to be afraid. They say that caring for someone with the LVAD is doable, and not as hard as it first seems.
Create a List of Questions for Your Healthcare Team
Now that you’ve read more about being a caregiver, think about what questions you have and what you need more information about before your loved one’s LVAD surgery.
Here are some ideas for questions to ask your healthcare team.
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How much time will I spend daily on caregiving? How will that change over time?
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When I have questions about the LVAD, whom should I contact?
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What should I do if we need to hire someone to help with caregiving?
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How can we get help paying for additional help with caregiving?
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What helps in dealing with the stress of being a caregiver?
For a list of additional questions about LVAD surgery, living with an LVAD, costs, and more, explore our Questions to Ask Your Doctor page.
“At first we were scared, but taking care of the LVAD becomes part of a routine. You adjust to a new normal.”
Jeff, LVAD Patient
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