The Caregiver “Cloak of Invisibility”

Caregiving support to provide caregivers respite.

How Friends and Family can Support a Caregiver in Keeping Their Sense of Self

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Caregivers Need Encouragement
Caregivers, whether they are a spouse or friend, can find themselves in a “cloak of invisibility” as they lose touch with their identity. At the end of a long day, they may be weary, overburdened, or overwhelmed. As a result, they may start to feel alone with such a huge weight of responsibility on their shoulders.

Yet no matter what a caregiver is dealing with, it is vital for the caregiver to retain a sense of self. It may take some support and planning, but it can be done. As a friend or family member, there are ways to help a caregiver who is taking care of a loved one.

The “Cloak of Invisibility”

When the caregiver is a family member or otherwise clearly identified with the patient, people will sometimes accost the caregiver with questions.

They may ask, “How is _______? (the patient) or “Tell me how things are going with ____________? (the patient) and other similar questions and comments.

More and more conversations become only about the patient, which is quite appropriate early on.

Although done with kindness and caring, the caregiver begins to feel invisible.

Like Harry Potter’s “cloak of invisibility,” the caregiver begins to find their sense of self-slipping away.

In fact, caregiving has been associated with a number of health-related issues, including elevated levels of depression and anxiety, compromised immune function, and worse self-reported overall health. It is thus important for the caregiver to achieve a healthy balance of caring for themselves in addition to a loved one.

Caregiver support groups and maintaining social connections with friends and family may aid in dealing with this troubling phenomenon. This challenge has been exacerbated with COVID-19, where in-person social connections are not always an option. Virtual video visits, in this instance, can be a great way to check-in on a caregiver you know to see how they are feeling, or just a way to provide some social connection that is not about their caregiving. You can also check to see if local caregiver support groups are offering online events or communities in the near-term.

Friends from religious groups or the community can also volunteer to provide respite for the caregiver. Lotsa Helping Hands is a care calendar tool family, friends, and communities can use to support caregivers with everyday caregiving tasks like meal preparation, rides to the doctor, child support, home maintenance, or visitation.

Over time, respite care may be another option to help a caregiver beyond the informal support system of friends and family. Services like Papa offer a “Family On-Demand” program that pairs your loved one with a college-age young adult to help with everyday tasks and provide long-term companionship.

Caregivers Letting Go While Holding On

One of the greatest challenges of a caregiver’s journey is holding on to what must be done while letting go of other things.

This may involve holding on to daily routines for the patient, while revising social schedules and the usual habits of daily living.

It could be making end of life plans for a loved one while still affirming their own life and the lives of other loved survivors. Or it could show up as giving the best care possible while accepting certain decisions the patient makes like eating some foods which may not be nutritious, but provide the joy and emotional satisfaction that enhance their quality of life.

This letting go while holding on means embracing what can be done while empowering the patient, your loved one, the dignity and control over their own life and illness. Quite a challenge!

One way for friends and family to help caregivers keep their sense of self is to also ask “How are you doing with the sudden changes in your life?” or similar questions which include the caregiver in the content of the conversation.

Inquiring about the caregiver as well as the patient helps prevent that person from feeling invisible. Keeping connected with others is a vital “vitamin for the soul” for any caregiver.

Listening and encouraging can go a long way toward helping the caregiver maintain health and emotional identity.

This sense of self-enables the caregiver, whose plate is already full of tasks, to find that breath of fresh air to help them and their loved ones going through hard times.

To summarize, here are 5 ways you can help a caregiver you know who may be facing the “Cloak of Invisibility:”

  1. Check in on the caregiver and ask how they are doing. With all of the attention on the individual in need, the needs of the caregiver can often be neglected. Don’t always accept “fine” for an answer. Acknowledge that caregiving is tough and let them know you are there for emotional support.
  2. Take the time to listen. Friends and family may overwhelm a caregiver with advice and recommendations from their own caregiving experience. He/she may end up feeling judged for their decisions, which may cause them to avoid a conversation. To be truly supportive, be present and listen, and avoid telling him/her on what to do in their situation. Instead, let them know you are there for advice if they need it.
  3. Ask how you can help. You’d be surprised how many caregivers feel uncomfortable asking for help from friends and family. Tools like Lotsa Helping Hands can make coordinating support for a caregiver easy among the community using its shared online calendar. Tasks like meal preparation, picking up medications, providing rides, and help with household chores are examples of ways to help a caregiver with everyday responsibilities.
  4. Give the gift of self-care. Caregivers have a tendency to neglect themselves. Depending on the caregiver’s preferences, you can try gifts such as relaxation and meditation aids, a gift card to a spa day, or offer to take them out for a hike or other outdoor activity. Caregivers need breaks like all of us, so giving them at least a few hours of respite each week, through coverage from family and friends or a trusted service like Papa is essential.
  5. Stay in touch. Oftentimes, caregiver support is organized at the onset of a diagnosis, where community engagement is at its highest. Over time, however, this support can wane and caregiving tasks are left to a few or even just one individual. Being a caregiver can last many years, and as a friend or family member, it’s important to acknowledge that support may be needed over the long-term. Services like Papa can provide respite for long-term caregivers, especially for those who are taking care of a loved one who is elderly or facing Alzheimer’s or dementia.

Co-Authored by Nick at Papa and Amanda at Lotsa Helping Hand

About Papa

Papa helps caregivers and their loved ones by pairing them with college-age young adults called “Papa Pals” for companionship and assistance with everyday tasks. Papa Pals are trained service providers who take pride in the safety and security of their companions and can help with non-emergency medical transportation, grocery shopping, technology support and house help. Click here to learn more about Papa today.