What to Know About Being a Caregiver

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At some point in many of our lives, we will find ourselves becoming a caregiver, either to our parents, spouse, children, or other relatives. If you do not have the money to pay someone to look after your loved one, either you or a family member will become the primary caregiver. If you are a female, then you would be joining the 75% of other caregivers who are women. Men too are often the designated caregiver, but the majority who take on this role are women. According to American Association for Retired People (AARP) and the National Alliance for Caregivers, 1 in 5 Americans are caregivers.^[1]

Caregiving Can Be Physically and Emotionally Demanding

The life of the caregiver is not an easy one. In addition to taking care of their loved one, they may also have other responsibilities such as children, a job outside the home, and their own health issues. It can all lead to burn out. Caregivers often experience a strain on their physical and emotional well being. It is difficult to watch someone you love die. It can all be too much for any of us and can lead to psychological and physical problems for the one providing care. Research conducted by AARP found that 4 in 10 caregivers rarely or never feel relaxed.^[2]

Caregiving comes with an abundance of mixed emotions that range from happiness to be with our loved one to anger, sadness, resentment, regret, guilt, and grief. This grieving process is called anticipatory grief and can begin with a terminal diagnosis. Not only do we begin grieving the loss of our loved one and the life we had, but also all our hopes and plans for the future. Life is forever changed. There is much to grieve.

Providing Caregivers With Information Is Essential

Guilt is often a companion to grief. Caregivers worry about whether they are doing enough. They often berate themselves that they should or could have done more for their loved one. I had a client whose mother had died with no one with her at the end. As a result, she felt very guilty. She vowed when her father became terminal that someone would be with him constantly, so he would not die alone. She and her husband took turns sitting with him. One day while she was sitting with her father, the doorbell rang. She was expecting a package. Since she would only be gone for a minute, she ran to the door, got the package and returned to his room. In the short time she left his side, he had died. Her feelings of guilt were intense. What we know is that in working with the dying, it is not uncommon for them to wait until they are alone before dying. However, it is often a common source of guilt for those wanting to be there with their dying loved one. That is why providing the caregiver with information about what to expect based on their disease process and dying is so important.

Caregivers Need Support From Others

Caregivers have so many different tasks and responsibilities. It can be hard to manage them all. They may be responsible for giving and managing medication and helping with activities of daily living, such as eating, bathing, toileting as well as cooking, washing clothes, medical appointments, etc. While all these things can be stressful, paramount is the stress of watching a loved one die. The research literature refers to all these demands as a caregiver burden which leads to burn out.^[3] Caregivers are frequently reminded by family and friends about the importance of taking care of themselves. Their response is often, “I know, but when am I going to have time to do that?” People will offer advice, but it would be better to offer help. As the caregiver, you may find that others become more distant.

While caregiving can be socially isolating, it is important to reach out to family and friends for help. If no one is available then journaling your thoughts and feelings can be beneficial. Some things that would be helpful to do for the caregiver might be preparing a meal for them, offering to sit with the patient for even a short time to free up the caregiver to do something for themselves. Offering to run errands is helpful as well as just sitting and listening to the caregiver.

It has been found that elderly caregivers experiencing the mental and emotional strain of caregiving are more likely to die sooner than non caregivers. It has been shown that all the stress and demands of caregiving as well, in addition to their own health issues, can lead to increased deaths. Chronic stress also can attack the body’s immune system, making one vulnerable to sickness and disease.^[4]

Fortunately, there are helpful resources available to caregivers. Respite care can be a life saver for the caregiver by giving a temporary break from their obligations. It can be done at home, in a hospice, healthcare facility, or adult day care program. Respite can provide much needed rest. Connecting with other caregivers can be beneficial and supply the support that is so important. There may be groups in your area to investigate. The American Association of Retired People (AARP) offers online groups as does the National Alliance for Caregiving. These sites as well as others provide information, education, training, and support. The Red Cross also offers a training program for family caregivers. Some support groups are focused on specific diseases such as dementia or cancer. There are many different types of groups from which to choose. Caregivers do not have to go this alone. There is support available. People just need to be made aware of it and reach out.