The Effects of Caregiving, Part 2

This is Part 2 of our caregiving series to mark National Family Caregivers Month

If you missed Part 1, click here.

 

There are an estimated 53 million family or friend caregivers in the United States today, caring for adults or children with special needs. In 2015, there were about 43.5 million, according to a 2020 report prepared by the AARP and National Alliance for Caregiving.  And not only are there more caregivers, but their loved ones are requiring higher levels of care than ever before.

However, the report notes that despite the need for more specialized care, only 3 out of 10 caregivers had paid help. There may be many reasons for this, but the authors point out that one reason could be related to how complicated it is to navigate the healthcare system. And if the caregiver is able to find help, it might be unaffordable.

The Financial Strain

Caring for someone at home is expensive. Over a quarter of families that could save some money before becoming caregivers, now find they have nothing to set aside. This may not have an impact right away, but it could result in less financial security in the future. Twenty-two percent of caregivers used up their personal short-term savings and 12% used up their long-term savings; 15% had to borrow money from family or friends.

Depending on the age of the caregiver, many – up to 60% – must continue to work. But the task of caregiving often makes them late for work, requires them to leave work early, or take time off to address caregiving issues, like doctor’s appointments. Over 60% say their employer doesn’t offer paid family leave, so days taken are either unpaid or vacation time. And they live with the fear of losing their job because of time lost.

The Health Effects

Whether someone expected to become a caregiver because of a loved one’s gradual decline, or it was a sudden event – an accident or illness (like sepsis) that caused a quick deterioration, they are faced with a task that may seem never ending. This can have a significant impact on their health. In 2020, only 41% of caregivers said they were in good health, down from 48% five years ago; 21% said they were in fair or poor health, up from 17%.

According to the American Psychological Association, some of the most common problems faced by caregivers include:

• Depression and/or anxiety
• Feelings of guilt, worry, dread
• Thoughts of not wanting to be the caregiver
• Feelings of isolation
• Fatigue
• Insomnia
• Relationship stress
• Changes in physical and mental health

Many caregivers are good at hiding their problems, so family members and friends might not pick up on them. Or the caregivers may begin to act uncharacteristically. They may become overly demanding and blow up over something that would – at any other time – be a trivial issue. “Whether it’s from the patient they’re caring for, or whether it’s a delay in the schedule or them having to make an extra phone call, just little things can really set them off,” Chris Chimenti, MSPT, told Sepsis Alliance. Chimenti is Senior Director of Clinical Innovation at HCR Home Care in Rochester, NY.

Family members and friends need to understand that lashing out or being overly critical may be the result of being overwhelmed and exhausted.

And while mental issues may not be surprising, there are other problems that can affect caregivers that might be. Caregivers could:

• Develop a weakened immune system, which can lead to infection
• Lose weight unintentionally, due to lack of appetite or lack of time to prepare meals and eat
• Gain weight, due to eating whatever is available, medication side effect, lack of physical exercise
• Use medications more than they should, for issues such as pain, insomnia, depression, or anxiety
• Become injured because of fatigue, doing tasks that are too strenuous, or falling

But this doesn’t have to happen. There are ways to help caregivers.

Part 3 of this caregiving series: Helping the Caregiver

Visit the Sepsis Alliance Caregiving page to get more information about caregiving in relation to sepsis.