Self Care for the Caregiver
Taking care of someone with a terminal illness feels overwhelming and all-consuming, and it is. If you are the primary caregiver — the one who is most frequently with the patient, the one who is physically tending to the patient, and the one doing the mental gymnastics regarding what to do next, how to do it, and what is wrong — you will need a break. Or many.
Self-care is critical to your well-being as a caregiver. It will help you to stay healthy, grounded, kind, and compassionate, which will only benefit you and your loved one. When you are healthy, you can devote yourself to the privilege of tending to your loved one. Committing to your own self-care will only make you a better caregiver.
As you begin caring for someone who is dying, here are some things you can do to nurture yourself.
Ask for help.
The most important way to take care of yourself is to ask for help. Ideally, set up a schedule to have others involved in the care of your loved one so you can anticipate your time off and plan activities or outings if needed. Caregiving is a 24/7 commitment, and even when the patient does not need you, there is still plenty to do — the groceries, the fridge, the finances, the cleaning, trips to the pharmacy, and grocery shopping. People want to help, but sometimes they do not know what to do. If you insert those who want to help into your plan, that may be all they need to get involved.
Take some time off and leave the premises.
Making time — one hour, an afternoon, five days — to care for your needs is crucial. Picking up groceries does not count as time off. Most hospice benefits will pay for your loved one to receive care at a facility for up to five days so the caregiver can take a break — take advantage of this.
Devote some time everyday to solitude or silence in order to re-center.
Creative expression
Creative expression can be a wonderful way to work through your emotions or distract you from the heaviness of the work you are doing. Consider collaging, drawing, painting, sculpting, playing or creating music, sewing, knitting, baking, cooking, gardening, writing, or singing. Try anything that piques your interest. Let go of any criticism about whether you are good at it and play.
Spend time in nature.
Being in touch with the natural world can remind us of the cycle of life and death which may help us get one step closer to our own acceptance of death. Natural beauty and awe can also inspire one to be altruistic. Try walking slowly and intentionally outdoors or lying on the ground to look up at the trees.
Pay attention to your body.
Make time for movement. You can walk, run, yoga, cycle, stretch, dance, hike, swim, ski, skate, or even kiteboard.
Commit to sleep. Often caregiving occurs in the middle of the night. If you get the opportunity to nap throughout the day, take it. Even 10 to 45 minutes can recharge your weary battery.
Breathwork is an easy way to ground yourself, and it does not require you leaving the patient’s side. It helps to establish presence, centering, and tranquility. Try slowly inhaling as you count to four. Hold for four more counts. Slowly exhale as you count to four again. Hold for four. Repeat as often as you like.
You can also inhale slowly for the count of four, hold for seven, and exhale slowly for eight. Repeat often. When you are breathing in either duration, concentrate on your breathing in the lower part of your lungs, expanding your belly as you breathe.
Talk to someone.
Spend time with dear friends, no matter how brief. Caregiving can feel very isolating; your world is suddenly as big as the route from the pharmacy, to the grocery store, and back home. Connection is critical, and when your friends see and understand what you are going through, they will be more able to empathetically support your emotional processing during this intense time. Furthermore, they will be able to reflect back with you on your experience after your loved one has died, which may help you process your grief. Invite them into your house and your world.
Start therapy. You are dealing with your own losses, suffering, and grief; it may be helpful to talk to someone about it. One-on-one counseling might be a good place to begin.
Utilize the hospice social worker or chaplain. One of the greatest gifts hospice provides is a team approach to caring for the patient and the family. If you need resources or someone to talk to about any concerns at all, call on the hospice social worker or chaplain for their guidance.
Practice meditation.
This may feel like work, but meditation can help you to still your mind, soften anxiety, and elicit your body's relaxation response which will help your own cells to rest and recover. I love these guided meditations and body scans. In addition to the two links here, you can find a million with a simple Internet search.
Try loving kindness meditation. This is an excellent practice to cultivate compassion toward self and others. Some patients can be rather difficult — they are struggling with their death, grief, and overwhelm. They may be in pain, nauseated, or short of breath. Distressing physical symptoms can seriously alter our personalities and the way we react to life. Loving kindness meditation allows for a more compassionate approach to the suffering of your loved one. It can also help us to practice self-compassion. When we have compassion towards ourselves, we can show up with our full heart and brain while taking care of our loved one rather than feeling cluttered with guilt, regret, or anxiety.
To practice, find a comfortable seat in a quiet room or while sitting next to the patient.
Imagine someone that is easy to love — your partner, your child, or a sure bet, your cat or dog. Envision their face, and silently say the phrases:
May you be happy. May you be safe. May you be free from suffering.
Next, focus on yourself and, with your hand on your heart, say the same three phrases.
May I be happy. May I be safe. May I be free from suffering.
Then, focus on your loved one, repeating the same three phrases.
May you be happy. May you be safe. May you be free from suffering.
You can repeat these phrases as often as you need and with whomever you wish to express these feelings toward.
This is a practice that reminds us of our universal need and desire to be safe, free from harm, and happy. It will also help to deal with the more difficult people in our lives, sometimes including the one we are caring for.
Lean into your spiritual side.
When someone is dying, you are more likely to contemplate your spiritual point of view or deeper religious beliefs. If you can find meaning in this caregiving experience, it may help to boost your compassion and sense of connection (Vachon 2020). If you have one, call on your faith community for support or call on the hospice chaplain. Chaplains are educated to serve patients and families of all faith backgrounds including agnostics or atheists. Ponder the murky mysterious questions: What is it all for? Why me? Why now? What am I learning from this experience?
Grieve. I wrote a full blog about grief here.
There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love. Washington Irving
Journal about it. This may help you to gain some clarity or perspective. The caregiving experience has the potential to crack you open emotionally and spiritually. Conversely, it may solidify your belief in no god. Spirituality is a lifelong journey of depth and grace that waxes and wanes, and you are living it. Journaling can help with understanding where you are at right now.
Lose thy shit.
It is easy to bottle up many of your emotions, especially the scary ones like anger and grief. As long as no one gets harmed in this process, find a place to let these emotions out. Write all of your scary emotions down. Burn them or toss them into a river. Power wash the deck while screaming. Dance. Throw some plates against a wall. Run up a hill. Run down a hill. Play Smash Bros with your grandson and really give it to him this time. When we give our emotions the time and attention they deserve, they can soften and subside a bit.
Have a gratitude festival.
Gratitude is like throwing ice water on your perspective–n a good way.
Gratitude is like throwing ice water on your perspective — in a good way. It is easy to get bogged down by the sadness and difficulty; hospice is sad and difficult. Sometimes we need to reframe our experience, and usually we have something to be thankful for. Think of three things you are grateful for; it can be as simple as your coffee, your cat, and your clean underwear.
This is not an exhaustive list, but hopefully it can help you to get started and more importantly, to remind you not to feel guilty about caring for yourself during this time. When I took care of my mom when she died, I experienced guilt when I left her side, but every time I returned, I felt recharged and ready. It also gave my siblings an opportunity to be with mom without me hovering over them. Start small if you have to. Remember, when you take care of yourself, you will be physically and emotionally healthy enough for the work of tending, loving and giving care to another human being.
Blessings.
Source: Vachon, Dominic. O. (2020) Chapter 14 Spirituality or Philosophy of Caring How Doctors Care. San Diego, CA: Cognella Academic Publishing 445-503.