Adult Hospice Care
A Caregiver’s Guide to Self-Care
Being a loved one’s caregiver, whether part- or full-time, takes a lot of energy, focus and work. If you’re not caring for yourself first, it can take a lot out of you. According to a report by the Family Caregiver Alliance, caregivers face an elevated risk of developing physical, mental and emotional health issues. By ignoring or devaluing their own needs, caregivers can get stuck in an exhaustive cycle that often results in further health complications on the part of the caregiver and their family member not receiving the best care possible.
You can’t pour from an empty glass. While that may be literally true, the message also applies to caregiving. If you aren’t taking care of yourself – filling up your metaphorical glass – it can become more and more difficult to continue providing care to your loved one. When you’re at your best, you and your loved one’s care benefit.
Preparation is Key
If you’re becoming a loved one’s primary caregiver, planning and preparation is key. This may seem obvious, but when facing the major life changes that come with taking on this role, it’s easy to get lost in the whirlwind of medical needs, doctors and new routines. You may not be given a lot of notice prior to becoming a caregiver. Regardless of the timeline or circumstances, it’s essential that you take a beat and proactively implement a plan to set you and your family member up for success.
In this connected day and age, the internet is full of free and low-cost resources for caregivers, but it can be a bit overwhelming and time-consuming to dig through. That’s why we have compiled a list of websites, articles, printables and apps that can help.
The National Alliance for Caregiving’s guidebooks
AARP’s backlog of caregiving articles
Caring.com’s resource center
This downloadable caregiver task sheet
The American Bar Association’s power of attorney FAQ
The Caring Village app serves as a one-stop-shop for caregivers looking for a place to store documents and collaborate with other members of the care team
The Sanvello app focuses on mental health and can be helpful for caregivers looking to take better care of themselves
Meet With Your Loved One’s Care Team
In addition to getting informed about your loved one’s health needs, their medical team can offer guidance and point you in the direction of caregiver resources. The care team’s goal is to provide their patient, your loved one, with the best possible care, and ensuring that you have the proper resources and support is a major part of that.
The unfortunate reality of caring for a loved one is that their care team may not be as organized and cohesive as they need to be. This can be especially true for people with care team members from a variety of organizations. For instance, a patient residing in an adult living facility may be impacted by their team, a hospice team, their primary physician and other parties and specialists. As a caregiver, you essentially serve as the go-between and coordinator for all of these different parties.
To ensure everyone involved with your loved one’s care is on the same page, keep in consistent communication with each team, keep detailed notes and request that they also note down everything they do. Suggest that each team share their notes with the other teams and ask about holding regular meetings where representatives from each team can coordinate. Some organizations may do a better job of taking care of these things for you, but it’s important to approach the situation knowing that these responsibilities will likely land on you.
Consider Your Financial Options
Becoming a caregiver can impose a serious financial burden. An AARP study found that roughly 78% of caregivers report paying out-of-pocket for costs related to caregiving. After becoming a caregiver, many people are unable to work – in fact, over six million people are unable to work in the U.S. because of their caregiving duties. This puts families in a predicament where they are unable to earn an income to cover their cost of living in addition to added medical expenses.
However, there are options. Caregivers are able to get financial relief through a variety of programs in the U.S. Governmental, local and illness-specific organizations exist with the express purpose of ensuring caregivers and their family members are financially supported and have one less thing to worry about. The Family Caregiver Alliance has compiled a list of resources for individuals looking for assistance.
Remember, there is nothing wrong with seeking financial support while acting as a caregiver. Receiving an income or payment for providing your loved one with care does not make it any less meaningful. Caregivers across the country are performing nearly $306 billion in unpaid labor yearly. That simply does not need to be the case.
Don’t be Afraid to Ask for Help
Maybe you don’t want to ask for help because you can “do it all” yourself. Maybe you don’t know who to ask. Navigating the process of serving as a loved one’s caregiver can be difficult and create a lot of tension. It’s important to know that there are options out there that can provide relief.
Respite care is a great option for caregivers who need a break, but want to ensure their family member is in good hands. This care type allows patients to stay at an inpatient facility for up to five days and give their caregiver a rest from their responsibilities. Additionally, hospice and palliative care providers, like Agape Care, can assist with caregiving in the patient’s home through Routine Home Care options. Your loved one’s care team can help provide you with these services or connect you with organizations that can.
Take Some Time for Yourself
It can be easy to neglect your own needs when serving as a family member’s caregiver, particularly when caring for someone who needs near constant care. However, it neither serves you nor your loved one. Consider adding these things to your routine to ensure your health – physical, mental and emotional – is cared for:
- Regularly take breaks from caregiving. This can look like sharing caregiving duties with another family member or seeking respite or routine home care from your loved one’s medical provider.
- Intentionally do things just for you. Go see a movie, take an hour to read alone, buy yourself a treat, go for a run. Regularly doing things that bring you joy and comfort is essential to your health.
- Go to therapy. Talk therapy can be incredibly helpful for caregivers; helping individuals deal with burnout, grief, guilt and a host of other negative emotions. Speaking with a therapist gives you the opportunity to “offload” onto someone who is a completely unrelated third party, can tap into their expertise to help and will keep anything you say confidential.
You’re Not in This Alone
You’ve heard the emergency presentation given at the beginning of every plane ride: before assisting others with their mask, put yours on first. Whether the metaphor is about filling your glass or putting on your mask, the message is clear: you cannot be the caregiver your loved one needs if you are neglecting yourself.