A Guide to Caregiving at Any Stage

Whether you’ve just taken on the responsibility of caring for a spouse, parent, family member or friend, or you’ve been doing it for many years, the need for good information and support never ends. Over the years, Next Avenue has written hundreds of articles on aspects of caregiving. This guide has organized many of those insights and resources into three of the most common caregiving scenarios: Early-Stage Caregiving; Mid-Stage Caregiving and Late-Stage Caregiving. The links inside each section take you to Next Avenue articles that offer more information and possible solutions. We hope this helps you navigate the twists and turns of being a caregiver. Please let us know if the guide has helped you and how we can improve it.

• Early-Stage Caregiving
• Mid-Stage Caregiving
• Late-Stage Caregiving

Maybe you’ve just become a caregiver because of your husband’s recent diagnosis or you’re concerned that you may soon become your mother’s caregiver because she seems too frail to continue living alone in her house. These insights can help keep you on track:

Let’s say your mother lives independently but has been struggling lately due to health or mobility issues. You may be concerned that it’s time to change her living situation. If you’re weighing the pros and cons of moving her into your home or finding the right assisted living facility, it may be time to take a step back.

You’re trying to do the right thing for your mom’s safety and well-being, but don’t overlook the fact that it is her life and you don’t get to make important choices for her. You can broach the topic, though, if you’re concerned. Questioning someone’s ability to remain in her home can be a thorny conversation to initiate, especially if the person is fiercely independent, but it can start a dialogue between you and your loved one.

Before suggesting that your loved one relocates, brainstorm ways that the person can safely stay in his or her own home, honoring a desire for independence and familiarity while giving you greater piece of mind. If you test out these steps and they aren’t effective enough or if your loved one is initially open to the idea of moving, then you can decide together whether a formal residential program would be best or if he or she should move in with you.

If you realize that you’ll need to cut back on your work hours to be a caregiver, you may be worried about your financial future, which is a very real concern. Research has shown that more than 40 percent of caregivers use their own money for caregiving expenses, and many people end up resigning from their jobs when the caregiving responsibility becomes too time-consuming. Most family caregivers are unpaid, although some people can get paid for the work that they do. This varies by the situation and your location.

You may want to look at options available to you in your state, since every state has different support programs and services for family caregivers. These can include counseling and respite care. Soon, caregivers nationwide may benefit from the recently passed Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, signed into law in January 2018. The act requires the U.S. Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to support family caregivers.

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If you’ve been a caregiver for a while, you probably know what to anticipate from your loved one — even if your “expected” sometimes includes the unexpected. You may function on autopilot at this point, but it’s important to stay attuned to your loved one’s needs and feelings, as well as your own.

Caregivers have many responsibilities. In addition to caring for your loved one, you might have a job and you could be raising children — not to mention your social life and other interests. When everything runs smoothly, your caregiving responsibilities don’t get in the way of other things; but everyone experiences conflicts at least some of the time.

Although it can be difficult to balance your work life with your caregiver role, it’s definitely possible, especially if you have an understanding boss. Caregiving may prove tricky for a growing number of millennials with young children who are becoming family caregivers, but in some cases, the loved ones whom they care for can provide babysitting services, which helps. It can be comforting to know you share many of the same concerns and challenges as other caregivers.

Sometimes, caregiving means taking on tasks that you hadn’t expected would be your responsibility, such as handling a loved one’s finances when the person is no longer able to pay bills and make sound decisions because of dementia. Or you might have to talk to the director of an assisted living facility because residents are bullying your loved one and it’s affecting her mood and her willingness to participate in activities.

If you are not well, mentally or physically, it will be that much harder to take care of your loved one. Pay particular attention to your mental health, because twice as many family caregivers suffer from depression, compared to adults in the general population. Many caregivers put their loved ones’ needs before their own. They bow out of social circles and skip activities they love to devote themselves fully to their caregiving duties. If you do this, you may feel isolated and burdened over time, with nobody to turn to for help.

Staying connected with friends, even if only by phone, can be a valuable link to your pre-caregiver life and help you remain mentally healthy. Someone who has a history with you, who knows the devotion you’ve put into caregiving will hear it in your voice when you’ve had a particularly difficult week and may be able to offer you respite care to help you recharge. If no offer comes, ask for help. People don't always know when a friend needs help.

Many people consider caregiving to be a thankless job that only causes stress. But studies have shown there are benefits to the caregiver. For example, because caregiving is an act of kindness, it can cause your body to release feel-good hormones that can help you feel more relaxed. This can counteract some of the stressors associated with caregiving. Research also has shown that the compassion, kindness and caring you give to your loved one actually is good for your own health. Some data show that caregivers live longer than adults who don’t have caregiving responsibilities.

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When your loved one’s health declines and he or she needs to move into a long-term care facility or receive hospice care, it can feel overwhelming and heartbreaking. Yet, your responsibility remains — you need to make decisions and ensure the best care possible.

For example, if your dad previously lived by himself or with you, it might be time to seek guidance from doctors and social workers to find an ideal long-term care facility.

But how do you really know that the place you’ve selected is a good fit? If your dad has dementia or communication issues, you might worry that his needs won’t be met because he can’t express them.

If you live nearby, you can visit often to see how well he’s faring, but you can’t be there all the time. And, long-distance caregivers rarely have the chance to experience a facility first-hand.

For these reasons, some family caregivers have found creative ways to make sure their loved ones are being treated properly. Some people have hired private investigators to check on their relatives in nursing homes. Others who suspect abuse or neglect by facility staff consider placing surveillance cameras in their relatives’ nursing home rooms, although the legalities of this vary by state.

Many people know very little about hospice care but oppose the idea based on their misperceptions. They believe it’s only for people in their last days of life, and that placing a relative in hospice care means losing all hope and stopping all treatments.

In reality, hospice care is available to terminally ill people whose life expectancy is generally six months or less, and focuses on making people comfortable for the remainder of their time. This includes pain relief, emotional counseling and spiritual guidance.

If you’re trying to decide whether hospice care is right for your loved one, take an honest assessment of the situation. If her health has been declining and she’s too frail to endure endless batteries of tests and painful treatments, talk with her doctors about the possibility of hospice care.

Many families find hospice care to be a compassionate treatment for loved ones during their final weeks or months. Hospice care also provides support to caregivers throughout the process, which can help you and your family better cope with the situation.

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We hope this primer to the different stages and considerations of caregiving has answered some of your questions. Please let us know if it has been helpful or if you have suggestions for how we can improve it. Next Avenue exists to serve readers like you and your input helps makes our journalism stronger.