Things You Might Not Expect on Your Caregiving Journey

Caregiving can be a tough road. It comes with ups, downs and plenty of emotional side swipes. Most people have preconceived notions about what caring for an older or chronically ill loved one will be like, but when you’re there—when it’s you and it’s your parent, spouse or sibling—things can be much different. Things can come along that you just weren’t expecting. Here’s a quick guide to some of the bumps that just might take you by surprise.

The extraordinarily complex emotions you might experience

Janet Hart, a leader for the Area Agency on Aging 1-B’s Powerful Tools for Caregivers workshop, explains that many caregivers are not prepared for some of the emotions they experience. Some of these include:

  • Loss of a sense of self

Hart explains that caregivers often cope with their long-term caregiving role the way they would with a short-term, acute illness—by setting aside their own needs while they tend to their loved one’s condition. Hart cautions that this approach can become exhausting and overwhelming; it may begin to wear away at the caregiver’s emotional and physical health. Hart says she’s heard many caregivers say things like “I don’t even remember what it is I used to enjoy doing” and many caregivers struggle with guilt if they do try to take a break or do something enjoyableShe recommends that caregivers learn to practice self-care.  “It is so important to realize that self-care is not selfish,” she emphasizes. “It not only benefits the well-being of the caregiver but of the person receiving the care as well!” Hart also suggests reaching out for help and support early on in the caregiving experience. “Try friends, family, your house of worship, and companies and nonprofit organizations that specialize in senior care.”

Your local Area Agency on Aging can be a good place to start in finding local resources. Use the Eldercare Locator to find the AAA serving your area.

  • Feelings of guilt, resentment, sadness

Caregiving is an emotional journey. Caregivers feel guilty about not doing enough, resentful about having to do so much, and then guilty again for feeling resentful. “It’s a vicious guilt, resentment, guilt cycle,” Hart explains. Along with guilt and resentment, caregivers can also feel regret (“Caregiving is full of what-ifs,” Hart said.). Sadness and grief about their loved one’s condition, or anticipatory grief about the eventuality of losing their loved one, are common, as well.

It is critical to listen to and tend to these emotions along the way. “So often, as with self-care, caregivers push these emotions aside,” says Hart. “These emotions take a backseat to the immediate needs and feelings of the person receiving the care.” She encourages caregivers to see emotions as signals that they need to listen to. “These emotions may mean we need to make a change in our situation, that we are grieving a loss, or that we are experiencing increased stress.” Hart cautions that caregivers have a higher incidence of depression, with those caring for someone with dementia having an even higher rate. She advises caregivers to be aware of the symptoms of depression and seek medical attention if they experience them.

How difficult it can be to get your loved one to accept help

While it may be obvious to you that your loved one might need some additional help, it may not be as obvious to them. You may get some pushback. Remember that it is a huge transition for them that probably has lots of feelings of grief and loss attached to it. Some tips when talking to your loved one:

  • Consider safety: When in doubt, err on the side of safety. You can work to fix hurt feelings, but if a safety issue happens it could be something that can’t be undone.
  • Listen for the “whys:” Understand what’s making them resistant and look for solutions. For example, if they don’t want to move because they want to keep their pets, look for housing that accepts pets or housing that allows animals to visit.
  • Don’t take it personally: Remember you are doing this because you care. Conversations are not always going to go well. There might be some uncomfortable moments, but that’s ok.
  • Be patient: It might take multiple conversations. Sometimes, it’s a process.

Changes in the relationship with the person you’re caring for

This can be especially pronounced when caring for a parent or a spouse, and these role changes can impact the person being cared for, as well. If your parent, whom you’ve always depended on, now depends on you, that can be disorienting for both of you. If you’re caring for a spouse, you may grieve the loss of a feeling of partnership or find yourself overwhelmed or resentful when taking on responsibilities that they always performed. Hart says that good communication is key. “Communicating well helps reduce stress and frustration, helps solve problems, and helps build relationships,” she says. “Communication can help create calmness and a sense of cooperation.”

How hard it can be to balance everything

Work, kids, house—balancing it all can get even trickier when you throw in caregiving. In fact, it can get outright overwhelming. Hart notes that when juggling multiple responsibilities, it’s important for caregivers to reach out for help and to also have realistic expectations about what they can and can’t do. “Focus on what you can do instead of what you can’t,” she says. She adds that it’s important to set some goals around self-care and making time for things that you enjoy. She says to make sure to give your own needs some priority and build in time for yourself.

The joy it can bring

Lastly, caregiving can be stressful, overwhelming and emotionally upending—but it can be joyful, too. Many caregivers feel that caregiving is a way to give back to someone who has been important to them or cared for them. Caregiving can also give us an opportunity to see our loved ones in a new light or deepen our relationship. It can help strengthen our relationships with others as well, as spouses, siblings, friends or neighbors step in to help or give emotional support. “I have seen caregivers find help from unexpected people and in some unexpected ways,” says Hart. “And that can be beautiful.” 

This blog post is courtesy of the Area Agency on Aging 1-B, a nonprofit responsible for serving more than 700,000 people 60 and older in Livingston, Macomb, Monroe, Oakland, St. Clair and Washtenaw counties. By providing community-based services from meals to in-home care, the Area Agency on Aging 1-B enables older adults and adults with disabilities to maintain their health and independence in their homes. More information is available by calling the AAA 1-B Information and Assistance Telephone line at (800) 852-7795 or visiting www.aaa1b.org. We’ll be partnering with AAA 1-B on our Midlife Map series. Their experts will provide monthly tips geared toward the “sandwich generation” – people in midlife facing the complicated juggling act of caring for children and older parents at the same time.

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Photo credit: Eva-Katalin

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