In 1998, I took Family Medical Leave, packed up my one-year-old son, and flew to California to care for my mom when she signed on to hospice. I was 28 years old, and my mom was 58. On the flight, I contemplated my expectations:
- My mom and I would finally get close.
- She would tell me intimate details as she processed her death.
- The family would gather around her telling sweet stories.
- My son and I would add some fun and energy to the mix.
As soon as I walked into the kitchen in the home I was raised, all of my inspiration dissipated. The house was a mess; mom had declined significantly since my last visit. She needed help to get off the couch, and I could feel her backbones when I hugged her. I had a jolt of anticipatory grief.
Nursing school and 18 months of a nursing career did not prepare me for the gut-wrenching experience of losing my mom while managing her medications, her shortness of breath, her oxygen tanks, and her overall comfort. I was instantly exhausted. Did I mention, I just got off the plane?
Taking care of your loved ones while they are in hospice is overwhelming. Period. The caregiving responsibilities are enough to make one run. When you mix in your own grief? Forget it. The hospice admission process alone is about two hours of extensive paperwork and education. Everyone's eyes gloss over after about 40 minutes. One can only retain so much lectured information (maybe 20 percent on a good day). Here are some initial things to do and questions to ask as you work through this initial stage of surprise and overwhelm.
Gather information about hospice and your loved one’s symptoms.
Most hospices offer a binder of pertinent and helpful information. The caregiving learning curve is steep, and you’ll want something to refer to. Ask the nurse about your loved one’s symptoms and medications you will be managing. You will want your own notebook to track medications given and their last bowel movements. You can always grab my book, Some Light at the End, which covers all of this.
Hospice has a team that is available for your loved one and your family.
The hospice services team includes a social worker, a nurse, a volunteer, a home health aid, and a chaplain; they are available for you, too!
Utilize the social worker and the chaplain to process the emotional pain of losing your loved one. Request the home health aide give your loved one a shower or bed bath two to three times a week. This will alleviate some of the physical responsibility while maintaining a hospice patient's dignity. Ask for a volunteer to sit and be with your loved one while you run out to get your hair done or take a nap. You can call a hospice nurse anytime you have questions about your loved one’s care or need an urgent visit.
Assemble your own team of friends and family you trust.
You will need help. Hospice is not a 24/7 caregiving service. At most, you will have hospice professionals in your home six to eight hours a week. If you have siblings, divide up the caregiving equally. If you have friends available, you will want help with grocery runs, meals, housekeeping, babysitting, laundry, and moments to take care of yourself. No one can successfully care for someone full-time without breaks -- and by successful, I mean…
Your goal is to be loving, compassionate, and engaged.
It is difficult to be both a daughter/son/sister/brother/wife/husband and caregiver, but you are. It will be clunky and awkward, and you will think, “They want me to change mom’s diapers?” And you will do it with grace and tenderness, the best you can.
I am a trained professional, and I usually need another person to help me change a brief, reposition a patient in bed, or help them off the couch. Offer yourself some grace and space. This will not be perfect and smooth; throw your expectations into the river. Laugh when you can. Call on your own team of friends to help you.
Take care of yourself.
As a nurse and a mother, I consistently take time to fill my well. I have finally come to the conclusion that when my kids see me do yoga, have coffee with a friend, or meditate, I am modeling proper self-care. It’s not stealing time away from the family. I am a much more compassionate nurse and mom when I have rituals that make me less flappable.
Life expectancy is brief which shifts your perspective.
If your loved one is enrolled in hospice, that means that two physicians have certified that they have less than six months to live if the disease runs its course. The average life expectancy of a hospice patient is 89 days, which helps to put things into focus.
This time will likely be brief. After my mom died, I never regretted missing parties, social events, or volunteering. Decline offers, activities, or jobs that will not recharge you. This is not the time to be the chair of the auction.
Love is your best tool.
Yes, there are a million things to do, but remember: this time is, often, surprisingly short. Caring for your loved one when they are dying is one of the most loving things you can do. Being a supportive presence -- sitting next to them, reading from their favorite book, watching their favorite news program, doing regular life activities together -- is sweet and heartfelt.
You are with them, bearing witness to their experience and even suffering. Dying is a solitary sport but when you have someone with you in this process -- someone who does not leave nor run away -- they will experience more peace as they are dying. What a gift.
Looking for more information about hospice services? Read Hospice Care: Your Questions Answered.