Five Reasons to Embrace Calling Yourself A Caregiver

When my friend Nancy was diagnosed with stage IV cancer, I knew I wanted to help in any way I could. As a single woman with no family close by, Nancy had somewhat limited support.  

I enlisted some friends and we began doing fundraising for her treatment. Soon, I started accompanying her to medical scans. As Nancy’s cancer advanced and she was unable to work, I helped her complete her medical leave paperwork. Shortly after, she asked me to be her healthcare surrogate and to accompany her to her oncology appointments.  

When Nancy made the decision to begin hospice care, I began bringing her meals, running errands, and cleaning for her. When she could no longer take care of herself, I packed up her apartment and stored her belongings in my garage. I helped find a residential care facility that specializes in hospice care. I visited Nancy multiple times a week at the care facility, bringing her meals and treats. I threw a 60th birthday party for her shortly before she died. I helped her plan her funeral and sat by her bedside for countless hours during her final weeks of life.  

I never intended to become Nancy’s caregiver, but that is indeed the role that I was fulfilling.  

My experience prompted me to begin thinking about how often it is that we find ourselves in caregiver roles, perhaps without fully knowing or acknowledging it.  

Might I be a caregiver? 

You are likely fulfilling the role of a caregiver if you engage in any of these activities for a person that needs assistance in the following ways: 

• Transportation to the market and other errands
• Accompanying to medical appointments 
• Overseeing and managing hired caregivers who support your family member 
• Managing medications 
• Completing household daily chores 
• Providing personal care including toileting and showering 
• Preparing meals and arranging for meals 
• Being at the bedside during hospital stays and advocating with medical team
• Providing emotional support and reassurance  

The path to caregiving often begins slowly and we typically don’t realize that we are in this role until we are very involved in care. Perhaps you became worried about your mother, so you began driving her to the market and doctor appointments. The house got harder to clean so you began pitching in to help reduce the load. Pretty soon, you found yourself also bringing her dinner a few times a week. Eventually, you're there multiple times a day and worrying every moment that you’re not there.  

Why might we hesitate to identify as a caregiver?  

We may not call ourselves a caregiver because we rationalize that we are “just doing what any good daughter does”. We may also be reluctant to use this title because it means admitting that our family member or friend needs care. Acknowledging that care is needed can be difficult for all parties. Losing one’s independence is hard. Talking about it can be even harder.  

What are the benefits of embracing the title of caregiver?  

Here are five compelling reasons why taking on the caregiver title can be helpful.  

1. Better support for your care recipient.  Thanks to the CARE (Caregiver, Advise, Record, Enable) Act that most states have in place, hospitals must identify a family caregiver at admission, record the caregiver in the medical chart, notify the family caregiver of discharge plans, and offer training on medical/nursing tasks that may be needed upon discharge.  Identifying yourself as the caregiver signals to the medical team that you know this person well and can help play a role in determining what medical assistance and support may be provided upon discharge.   

2. Increase in support for yourself. Caregiving is challenging and often we end up spending a great deal of time isolated due to the physical/mental abilities of our care recipient. Sometimes, especially in the case of individuals with a dementia diagnosis, you can be in the role of caregiver for many years. In my work as a hospice social worker, I often hear from these family caregivers that hospice staff are their only visitors.   In these situations, I encourage caregivers to connect with other caregivers to reduce their isolation. Even for those with outside support, it can be helpful to share your thoughts and feelings with others who understand the specific struggles that caregiving can bring. There are also caregiver support groups that are based on specific diseases, which are especially helpful because they can provide information and suggestions that may make your caregiving role more manageable.  

3. Better communication between you and your care recipient. Yes, it can be awkward and challenging to speak openly about the ways that you are helping your family member if they don’t like to acknowledge it. Yet, not talking about the reality of the situation can leave all parties feeling like there’s a big elephant in the room that can’t be ignored forever. When we can speak directly about how the relationship is changing, it often brings about a sense of connection and calm for all parties.  

4. Clear designation of roles within the family. Often in families, one adult child will provide the majority of the caregiving for their parent. This is typically determined by numerous factors like job flexibility, proximity, caregiving experience or willingness, and type of relationship with the parent. To best manage the responsibilities of caregiving, it can be helpful to involve your siblings in some capacity. Depending on the preferences of the parent, one sibling might manage finances, one might arrange for a paid caregiver to provide breaks, another sibling facilitates writing of cards and scheduling calls from the grandchildren. Being specific about the roles of family members tends to reduce resentment and miscommunication.  

5. Validation of your experience. Identifying yourself as a caregiver can help give acknowledgement and validation to this very challenging and often consuming role you have found yourself in. Naming something for what it is can provide internal clarification of who you are and what you are doing. It can increase your sense of purpose and create a sense of identity.  

Caring for someone who cannot care for themselves is important and critical work. When we name our role as a caregiver, it positively impacts you and your care recipient. Say it with me, “I am a caregiver.” 

1. For your reference, learn about the CARE Act: https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2014/aarp-creates-model-state-bill.html 
2. Find a caregiving group in your area: https://eldercare.acl.gov/Public/Resources/Topic/Caregiver.aspx