Hospice care arouses POWERFUL emotions. It feels like “the beginning of the end” for your loved one, and the hearts and minds of care partners understandably churn with sorrow. We must cope with the stress, emotional fatigue, sorrow and even anger, so here are some ways to manage anticipatory grief in hospice care.
Notice we said manage. Caring family and friends can never not care. Anticipatory grief is natural. You’ll never shut off those feelings – but they can be addressed in healthy and productive ways.
Anticipatory Grief: Let’s First Talk About What You’re Feeling
Your feelings are valid. You and your loved one have selected hospice care because they are preparing to die – a debt we all owe someday. Family and friends are sad because, well, death is a sad thing.
You’ll miss them. You know that pain is coming, so it wells up inside you sometimes long before they’re actually gone. That’s the nature of anticipatory grief. And no matter how happy your memories are, the grieving process often doesn’t let you feel that happiness again for quite some time.
You’re sad because death isn’t pretty. You’re sad because you don’t want to see your loved one in pain. There will be pain. There will be illness. And you’ll witness most – if not all – of it.
You may also be feeling anticipatory grief from uncertainty for what comes after:
- A companion lost
- New family roles
- Financial & legal responsibilities
Let’s consider some strategies and resources to deal with it all.
The first and most effective coping strategy is to recognize and accept reality. It’s OK to acknowledge your loved one is entering hospice for comforting end-of-life care. It’s OK to acknowledge death. It’s also OK to admit you’re experiencing stress and sadness.
Validate your own emotions. Accepting what’s to come may take time, work and even some counseling, which most hospice agencies offer as part of their services. But rest assured, you’ll begin to feel more comfortable.
Making Time for Yourself
Take a step back and make sure you are doing OK mentally. You’ll find yourself wanting to spend all your time with your loved one in hospice care. Sharing the emotional burden is especially common for primary care partners like spouses, children, siblings and other close family.
All very fair. It may be hard to let go of responsibilities, but hospice is there to be a rock of support and the expert in providing comfort.
But what about you? Self-care for caregivers is critical. (And it’s not selfish!) Find personal interests and ways to step away to refresh yourself – if only for a cup of tea or quietly read a book. Take it from me, as a primary caregiver, you’ll burn out by ignoring your own needs.
Other self-care activities could include:
- Walking & other exercise
- Quality time with friends
- Playing/listening to music
(Helpful hint: Take some time to journal. Simply keeping a notebook to unpack feelings in real time makes all the difference when you’re feeling depressed, anxious, angry and everything in between.)
Finding Support Groups & Resources
My life partner/care partner, Brian, lives with Alzheimer’s and vascular dementia. I’m a professional patient advocate and life-care planner – and even I need support. (So don’t feel bad for reaching out to people who can help.)
Group discussion, peer support and counseling can be great options to address anticipatory grief. There’s great value in surrounding yourself with both familiar and unbiased perspectives. Many communities have counseling resources – from licensed therapists to clergy and death doulas. Digital natives may find solace in online counseling and teletherapy services just a click or text message away.
People from all religious faiths and belief systems may require specific spiritual support. We’re big on supporting faith-based care and caregiver communities. Hospice patients (and their care partners) are entitled to whatever spiritual support or guidance they need.
Understanding the Path Ahead
Anticipatory grief with a loved one in hospice care can come from uncertainty. As we said, death is not pretty. There will be days when the seemingly never-ending suffering eases only through medication and sleep. You wonder why. You wonder how it could be better. What’s natural? What’s not?
You know what the end means, but you wonder how the road twists and turns until that day comes. Seeking to understand is natural. Reading and asking questions – hopefully without obsessing – can calm your worried mind. Understanding death as a process, you’ll be less shocked and dismayed at symptoms and outcomes.
Creating Everlasting Memories
Photos and memories can outlive us for generations. Let’s continue to make them. End-of-life care is still part of a LIFE WORTH LIVING. You can still provide and experience enjoyment, dignity and compassion from their bedside by sharing:
- Quality time
- Stories and memories
- Art and music
In their final months, weeks and days in hospice care, you may ease anticipatory grief by letting them express their love however they can. At the very end, when many individuals become nonverbal, research shows that they may still respond neurologically to pleasant conversation. Even sitting in silence, they still enjoy your presence.
Sad as you may be now, you’ll cherish these memories later.
Ways to Cope with Anticipatory Grief with a Loved One in Hospice Care
Dealing with anticipatory grief and loss is one the hardest things most of us ever have to do. You’re grieving someone special to you who is slipping away from our world and entering their next journey. Using these strategies and resources for anticipatory grief will allow you to focus more on the time that you have left to create memories, as you deal with your own powerful emotions.
Life-care planning can prepare everyone involved for the end. If you need help, Caregiver Support and Resources, LLC can help you to build a life-care plan today and refer you to a great hospice agency tomorrow.