Life, Love, and Loss

What family caregivers sacrifice when caregiving for an aging parent or spouse

Life, Love and Loss as a Family Caregiver

Taking on the responsibility of caring for an aging parent or spouse might not seem, initially, like a life-altering change. At first, it might just be picking up groceries for your mom or dad once a week. But eventually, caregiving might include having to leave your full-time job in the middle of the day to take a parent to a doctor appointment, or even coordinating transportation if both you and spouse are unable to get away from work. Most of our caregivers are still driving, versus the parents, who are not. Before you know it your whole life revolves around caregiving responsibilities – and sometimes this happens faster than caregivers expect.  

“We see it all the time,” says Mandy Ketcham, Community Relations Coordinator at Highgate at Yakima.

Many caregivers take on the responsibility of caring for a spouse or loved one thinking that it will be a short-term commitment. However, the reality is that most caregivers spend an average of four years in the role — and it could extend much longer. Nearly 25 percent of caregivers provide care for more than five years, and 15 percent of caregivers provide care for 10 or more years.

Whether you become a caregiver gradually or suddenly due to a crisis, caregivers often sacrifice a great deal, putting off managing their own finances, health, relationships, and spiritual needs in the interest of providing the level of care and comfort their loved one needs.

“They’ll spend a lot of time at their parent’s house making sure the bills are paid, the yard is mowed, that the pillbox is stocked,” Ketcham says. “They don’t want to come home and do it for themselves. I’ve heard, ‘Mom has a doctor appointment, so I need to cancel mine,’ and ‘I go grocery shopping for my dad, and then I'm too tired to go shopping for me, so I just pick up some fast food.’”

“It’s not surprising,” Ketcham continues, “that 80 percent of caregivers decline faster than the person they are caring for.”

Before you sacrifice your own health and well-being, here’s a look at some of the long-term effects of caregiving.


You Devote Many Hours to Providing Assistance

As a hands-on caregiver, there are many things you might help your loved one with. From grocery shopping and housekeeping to providing transportation to appointments and assisting with medicine or health monitoring, caregivers spend an average of 24.4 hours per week providing care.

Research shows that for nearly one-quarter of caregivers, the amount of time they put into caregiving is the equivalent of a full-time job. Older caregivers also tend to provide care for longer durations of time compared to younger caregivers.

“It’s not an eight-hour shift,” says Lisa, who cared for her parents at home for several years before they moved to Highgate at Great Falls. “It’s a 24-hour shift. I was feeling stress and burnout big time.”


You Spend Your Own Money

In addition to the hours you put into providing care, you probably pay for costs associated with caregiving out of your own pocket — research shows 8 in 10 do. If you are caring for an aging parent, you are even more likely to spend your own money on costs related to providing long-term care.

More than 10 percent of caregivers spend over $500 per month on caregiving costs. Many use personal savings, retirement, or even education funds to cover the costs, and 2 in 10 take on debt to cover these expenses.

You might find yourself cutting back on your own day-to-day expenses, too. Many caregivers go out to eat less, cut back on other entertainment, and put off household maintenance.


You Give Up Other Opportunities

Finances are not the only costs you face. With all the time you spend providing care, it is probably difficult to make time for other things in your personal life.

It was for Lisa Carter and her husband, John. Lisa’s dad, James, has dementia, so he could not be home alone — which meant the Carters could never leave the house together. During the week, Lisa stayed home to care for James, and John went to work. On the weekends, John stayed home with James so Lisa could go grocery shopping and get her hair cut. No more date nights.

In addition to having less time for romantic relationships, caregivers have less time for socializing with friends, getting away for a vacation, sleeping, exercising, spending time with children and other family members, and enjoying hobbies.


You Change Your Work Schedule

Those who work and provide care — which over 60 percent of caregivers do — are likely to sacrifice many aspects of their work lives, too. Nearly half of the caregivers who have outside jobs use some or all of their vacation time for caregiving. Others change their work schedule, take leave without pay, or even switch from full-time to part-time work.

Steve, who is in his early 70s, owns an orchard and struggled to work and care for his wife with dementia before she moved to Highgate at Yakima. “I spend an awful lot of time in the farm shop,” he says. “Sometimes projects come in, and you can’t be breaking away every 15 minutes and lose continuity with what you’re doing. When you’re working with other people, you can’t look at your watch and say, ‘I’m sorry, Frank, I got to run into the house real quick and check on my wife.’”

Providing care impacted John Carter’s life at work, too. “[He] would have to take time off so I could go and do stuff to take care of myself,” Lisa says. “That made me feel guilty. I was worried about his job.”


You Do Not Manage Your Own Health

With the added stress of caring for another, especially if you have a full-time job and other responsibilities, your own health can begin to suffer.

More than a quarter of caregivers say that their caregiving responsibilities make it difficult to manage their own health. About a third of caregivers have gone without dental care or a routine physical. They skipped or failed to schedule a test or treatment, have not visited the doctor when sick or injured, or forgot to fill their own prescription.

Sheila was providing care for her parents, Delores and Robert, who lived at home before they moved to Highgate at Yakima. Sheila knew that if her health was suffering, then her dad’s must be, too. “[Once] he said, ‘Honestly, I’m exhausted,’” she recalls. “He’s 88, and he was getting her up in the morning, and I was putting her to bed at night. It was a lot. It was physically demanding on him, and I felt like I couldn’t go anywhere.”


You Burn Out

Many caregivers share some of the caregiving responsibilities with someone else, yet half of caregivers report feeling lonely.

“What often endangers the emotional and physical health of caregivers is their isolation,” says Pauline Boss, emeritus professor at the University of Minnesota and a family therapist in St. Paul.

When caregivers do not get help to handle the stress, they often experience a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude from positive and caring to negative and unconcerned. This is known as caregiver burnout.

Caregivers who are burned out may experience fatigue, stress, anxiety, and depression.

In Boss’ most recent book, Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief, she writes: “Research tells us that the main cause of distress for caregivers … is caused by not being able to resolve the problem — not being able to ease their loved one’s suffering, not having control over their own lives anymore, not knowing what roles to play, not knowing when it will end, and not knowing whether they are doing a good job.”

Steve knows this feeling well. “At first, I thought I was capable,” Steve says. “I thought I wasn’t going to get to the point where I … You always have that sick feeling in your stomach. You’re lost for a while.”


You Can Regain What You’ve Lost

Today, Lisa Carter and her husband have time to go on dates, and when she comes to Highgate at Yakima to visit her dad, they can be as goofy as he wants to be. “There’s nowhere else I need to be,” she says. “I’m there to be the daughter and not the caregiver.”

Ketcham says many of the adult children she works with are 65- to 70-years-old and looking forward to retirement, but they haven’t been able to go on vacation for worry of what will happen to their aging parent if they’re not available. “Once Mom moves in with us and the family caregiver can finally go on that trip, they come back and tell us: ‘That was the best vacation because I didn’t have to worry. I knew she was being taken care of.”

People’s lives — and relationships — change for the better when they move into a Highgate Senior Living community. To learn more about how caregiving changes relationships and how Highgate Senior Living helped Robert, Lisa, and Steve be themselves again, download our eBook Navigating the Caregiver Relationship with a Parent or Spouse

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