Advice for Caregivers | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Advice for Caregivers

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The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.

Is it true to say that many people don’t realize that they are caregivers?

Yes, many say things like, “I’m not a caregiver; I’m his wife” or “After all that my mother has done for me, I’m just giving something back.” Most people who engage in caring for a family member, friend or neighbor do it because they see their loved one’s need. They have an inherent goodness and a desire to do something meaningful. They’re compassionate and just do helpful things without even thinking about it.

So, who are caregivers?

There are 65 million people in the United States who care for a family member, friend or neighbor who is ill, disabled, elderly, or a special needs child. These people are family caregivers. There’s a growing body of research data that more precisely describes them, what they do, and how caregiving activities impact their lives. Almost 30% of all adults in the US are caregivers. There is a family caregiver in about 30% of all households. Among all people in the workforce, about 20% are providing care to loved ones during their “off-work” hours.

A caregiver doesn’t have to be the person right on the scene all the time providing hands on help. These primary caregivers can be backed-up by secondary caregivers who may come on weekends or other times to provide respite and moral support for the primary caregiver.

Someone can also be a long-distance caregiver. These are people who live more than an hour away from the one receiving care, but are tied to that person by bonds of affection. They are affected by the needs and illness of their loved one and offer support in ways other than on-site assistance.

What do family caregivers do?

Family caregiving is done freely, without pay – it’s a service offered by one person to someone they know and care about. Some family caregivers are pressed into service because there’s no one else who can do it. Others become caregivers by choice. There are different ways of becoming a caregiver, and there are many different kinds of care they provide.

First, it can be physical care – helping others to move around – get out of bed, get dressed, walk, and bathe, for example. Another type is social and emotional support – this involves things like helping loved ones to get out for socializing with others, or to help them follow through on various commitments, appointments, or other responsibilities.

Managing household affairs is a third kind of support, fulfilling regular household functions such as grocery shopping, doing the laundry, or mowing the lawn. Help with personal affairs is the other kind of caregiving, whether helping with taxes or other financial duties, managing medications, or perhaps making a move.

Family caregivers provide a whole range of help and support. People who have different skills help in different ways.

How can a caregiver show emotional support to someone who has a rare disease?

In cases like this, caregivers can often feel hopeless and powerless. They aren’t sure how to help. Often caregivers focus on “doing” –completing tasks that need to be done. They think about getting someone to appointments or treatments.

But another crucial way caregivers can offer support isn’t so much about “doing” as simply “being with” the person who isn’t well. Being present – long distance caregivers can do this also – requires opening up to experiencing some of the same feelings that patients have… fear, uncertainty, worry, pain, and sadness.

Being present means sharing the pain and suffering--slowing down and listening. With gentle words, touch, eye contact, or silence, caregivers can reach a deeper emotional level and communicate, “I hear you and I have empathy for what you are feeling.”

The person is who is emotionally present doesn’t always try to make a situation go away. This is because in some cases, such as bone marrow failure diseases, there is nothing caregivers can do to bring a change to the condition. I believe caregivers should refocus from only doing action-oriented work and realize the support they provide by just being with their loved one, It’s a powerful gift that caregivers sometimes overlook, and this emotional presence counts for a lot.

How can caregivers help their own state of mind and emotional outlook when actively involved caring for another?

Step number one is to be aware of who you are and what you’re doing. Be aware that being a committed caregiver carries with it physical and emotional health risks. There’s significant data that tells us the stress of being a caregiver can erode and adversely affect the immune system, placing caregivers at risk for chronic illness, insomnia, anxiety, and depression. Don’t deny or ignore the fact that being a caregiver will have an effect on you.

Beyond self-awareness, the second step I recommend is to practice self care. Recognize that self-care isn’t selfish. It’s an investment in your good health, both physical and mental -- it is shown to build resilience. Resilience is your capacity to respond to adversity, to bounce back from setbacks and challenges. Resilience helps you handle caregiving situations and sometimes, even to grow from them.

Picture resilience as a bucket filled with your love and energy. In caregiving, you are pouring out the contents of this bucket for the other person’s benefit. If you don’t refill the bucket, it will soon be empty. When your bucket of resilient energy is empty, the care you can provide diminishes in quality. Or you may become so depleted that you become unable to provide any care at all.

Small amounts of self-care refill that bucket of resilient energy. Self-care preserves your health, well-being and capacity to care.

As humans, we have six interdependent parts: physical, emotional, intellectual, social, spiritual, and occupational –and part of the occupational area is your work as a caregiver. Signs of stress can be observed in all of these areas, and we need to pay attention. The signs of stress warn that our bucket of resilient energy is getting low. Do anything that nurtures or calms any of these six parts. This is what I mean by self-care. It’s the best way for caregivers to re-energize and ease their minds.

Do you have any advice for those who don’t believe they have the time for self-care?

My advice is to recognize how caregiving challenges them and say, “Yes, this is what I do, in addition to all the other things I do. It is good. It’s meaningful, but puts me at risk, and therefore I am committed to taking care of myself.”

Believe that self-care is not selfish. This is needed to live in a healthy way. Develop a self-care plan. Ask yourself –what energizes you and is fun for you? Make a list of these things and try to experience at least one of them each day or every week.

During crises when there is absolutely no free time, I recommend the simple act of deep breathing. Research shows that breathing slowly and deeply for three minutes a day can help reduce stress. When you recognize that you’re tense, take a deep breath. You have no choice but to breathe—deep abdominal breathing is an act of self-care you can practice anytime, anywhere.