Resources and Care for the Weary Caregiver

When my mom was admitted to hospice, I asked the nurse, “Do you sleep on the couch when you're here, or do you need an actual bed?” We quickly learned that she had no intention of staying, but we would manage mom’s day-to-day physical care.

When my mom was admitted to hospice, I asked the nurse, “Do you sleep on the couch when you're here, or do you need an actual bed?” We quickly learned that she had no intention of staying, but we would manage mom’s day-to-day physical care. And so we did. I helped her shower and get dressed, fed her small meals, and administered medications including suppositories for constipation. My mom and I had a solid relationship before, but this experience took it to a new level. 

Caring for your dying loved one is fraught with grief, fear, and responsibility. Caregiver syndrome is a real and rising health crisis. I want to offer some suggestions and resources that may facilitate a softer landing into this role.

Caregiving at home is not a perfect science. It will be messy, clunky, and frustrating, and if you can ever laugh about it, you should. When I visited a patient who had a sudden respiratory issue, she was lying flat in the middle of her king-size bed. I instinctively kicked off my shoes, crawled into the bed, and repositioned her upright. When she regained her breath, she looked at me sitting next to her and said, “I’m sorry, have we met?” Her daughter and I just laughed with relief that she could breathe easier. 

On another occasion, as soon as Jo* and I finished cleaning up her husband after a urinary explosion, she knocked his 16 ounces of cranberry juice and ice onto her husband and his perfectly clean bed. She looked like she was going to cry, and her spouse said, “oh, shit.” We just cracked up and started over. 

Help from a Friend

In my humble opinion, it’s a physical and emotional strain to care for someone all alone. Ideally, each family member should bear some responsibility or a team of trustworthy folks should be created.

If someone is available to run urgent errands, that will help. Each day is different for a hospice patient. They may suddenly have a craving for a Slurpee one day or banana cream pie the next. Yes, pie is considered an urgent need. Symptoms or bodily changes may come on suddenly requiring yet another trip to the pharmacy or store for pill crushers, adult diapers, or popsicles. Again, popsicles are urgent.

The day-to-day care of a home is already plenty, but now there are medical supplies, a hospital bed in the living room, and medications strewn across the kitchen counter. If home care tasks can be delegated such as lawn mowing, gardening, pet care, and cleaning the fridge or bathroom without judgement, that may provide some relief. Sending someone to the laundromat is an efficient way to deal with the never-ending laundry. Delegating grocery store runs and meal prep are a great way to eliminate one part of the enormous physical and mental burden. 

Caregiving is physically challenging and much easier to have two able-bodied caregivers for certain tasks such as bathing a bedbound patient or repositioning them higher in the bed. If you can have another person available for these tasks, that will help. I always recommend the hospice aide because they can help bathe or shower the patient which conserves energy for everyone. 

Here is one of the best tricks I’ve ever learned: To easily dress a patient in bed, cut the backside of the shirt from the bottom to three-quarters of the way up.

Dressing a patient in bed is no easy task. I remember helping a gentleman into his favorite Oregon Ducks t-shirt. He was afraid he wouldn’t fit into it because his abdomen was swollen with ascites from his liver disease. I suggested one of the best tricks I’ve ever learned — cutting the backside of the shirt from the bottom to three-quarters of the way up. He was thrilled he could effortlessly get into it.

It can be a great relief for the caregiver if friends or family members can take shifts sitting with the patient. 

Hospice caregivers have to pace themselves for an unforeseeable amount of time which makes it difficult to know what the pace is. Self-care is critical. Even a 10 minutes break is better than no break. A body scan is a lovely way to release some of the energetic intensity of caring for your loved one. This one is beautiful, and I am always a fan of Tara Brach’s guided meditations. 

Hire Some Help

No agency or caregiver is flawless; advocacy and clear communication will be ongoing necessities.

If there are financial resources available, families can hire outside caregivers; this AARP article describes the nuances of available caregiver resources. The hospice social worker can provide a list of local licensed and bonded caregiving agencies. The three companies I’ve been hearing about in Portland are Visiting Angels, Home Instead, and Marquis at Home. 

Finding a private caregiver is an option too, though they may not be not licensed and bonded and if they call out sick, there’s no replacement. A friend used Caregiver Connection recently and had a great experience. Carelinx is a referral agency for private caregivers. No agency or caregiver is flawless; advocacy and clear communication will be ongoing necessities. If they don't have the resources for caregiving services, consider raising the funds. 

Tips and Tools for Caregivers

Family Caregivers Alliance helps caregivers locate resources by state. These how-to videos are great resources for caregivers who have to learn everything on the fly — from how to operate oxygen safely to transferring your loved one to the toilet. 

The Caregiver Action Network provides education, peer support, and resources to family caregivers.

This article from the Family Caregiver Alliance describes the wide range of emotions caregivers experience and will hopefully encourage more self-compassion.

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Hospice often happens in a crisis; the patient is in the hospital one minute fighting for their life and the next day they are home on hospice. The caregiver is often in shock and assaulted with entirely new living circumstances. To minimize the overwhelm, assemble emotional and physical support, understand the resources available, and laugh whenever you can.

 Blessings.

*Writer’s note: Because of privacy laws, the subject of this story is not an actual patient, but a story that is inspired by many many patients and scenarios over the years.