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Running on Empty

Running on empty
New evidence and interviews with long term care family caregivers reveal a disturbing trend of the debilitating stress that often accompanies this role.

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January 4, 2011

New Home Instead Senior Care Survey/Web Data Indicate Stress Takes a Dramatic Toll on Those Caring for Older Adults

She awakens in the morning still exhausted after a fitful night of sleep and immediately feels overwhelmed. There's the report due at work today that she hasn't had time to prepare, her son's afternoon soccer practice and a school board meeting that night.

And, she's also a family caregiver for a senior - meaning she has to find time for her mother, who's 84-years-old and lives at home alone.

Her mother can't drive anymore, or reach into the cupboard to pull out a cereal box, or even see well enough to take her correct medication dosages. And today, just like yesterday, there are no easy answers about how to fit her mom into the never-ending juggling act that, for her, is just a typical day.

This is the life of the family caregiver - who totals one in every four Americans, according to various studies. New evidence and interviews with long term care family caregivers reveal a disturbing trend of the debilitating stress that often accompanies this role, although most still say that, in spite of the challenges, the job also comes with many rewards.

A recent stress test conducted by the Home Instead Senior Care® network demonstrated that of the family caregivers who participated, more than three-fourths (77 percent) reported their aging loved one's needs to be overwhelming, 90 percent said they have episodes of feeling anxious or irritable, 77 percent say caregiving is taking a toll on their family lives, and 56 percent seem to become ill more frequently.

"Every day we encounter these family caregivers who love and want the best for their aging family members, but don't know how to fit it all in," said Jeff Huber, President and Chief Operating Officer of the Home Instead Senior Care network. "For these people, stress is a constant companion."

The following stories are but a few true-life family caregiving stress examples.

Arlene Romilly, a nurse practitioner from Pittsburgh, PA, moved her parents into her home prior to her mother's death in September of 2005.

"It became so stressful as my mom's memory faded and she could no longer cope with daily activities without direction," Romilly said." "And my father just wasn't capable of being a caregiver. This created distraction for me at work. I had problems sleeping and was neglecting my own health care. For a while, I was treated for depression."

Things are better now that Romilly has a Home Instead Senior Care CAREGiver to look out for her father while she's at work. But in spite of the challenges, she believes the joys of elder care caregiving helped balance out the stress. "I was pleased to be able to care for my family," she said.

And Cat Tenorio, of Grass Valley, CA, had just been promoted to a new position at her accounting job when she gave it up to care for her mother, who was suffering from Alzheimer's disease.

"As my mother's Alzheimer's worsened, I had to move her into my bedroom because she was wandering," Tenorio said. "Consequently, I didn't sleep at night, and when she would sleep during the day, I would take sleep medication so I could, too. I gradually became addicted to it."

That's when Tenorio's husband had to step in and say, "We can't do this anymore." They moved her mother to a convalescent home, where she was comfortable until she died three months later. And instead of going back to her accounting career, Tenorio became a Home Instead CAREGiver so she could help others in elder care situations similar to hers.

These examples each illustrate how extremely important support is to the overall equation - it's one of the key survival tools for any family health care caregiver.

According to Patricia Volland, MSW MBA, senior vice president of The New York Academy of Medicine and director of the Academy's Social Work Leadership Institute, "This generation of seniors is living longer, and their children often are still raising families. They're not prepared for their older parents' needs, and the dynamic between adult children and aging parents is not a simple one."

In an effort to better prepare the social workers they train, Volland and her team commissioned a study, released late last year, entitled Squeezed Between Children and Older Parents: A Survey of Sandwich Generation Women1. The poll, which surveyed women ages 35 to 54, showed that more than 60 percent of women concerned about an aging relative's health said they have difficulty managing stress, compared with 48 percent of women for whom an aging relative's health was not a concern.

Women concerned about an aging relative's health were about three times more likely (34 percent) to say they worry "a great deal" about having enough time for family than those who were not responsible for the care of an aging loved one (12 percent).

"Working through the maze of helping a loved one can be more than a full-time job," Volland said. "Social workers are uniquely trained to provide comprehensive care coordination. This begins with a comprehensive assessment, which includes identifying resources, managing the complexity of the relationships between the many care systems people encounter such as health, payment, and formal and informal supportive services, as well as dealing with family dynamics."

Social workers and other senior care experts often recommend resources like Home Instead Senior Care to help the elderly remain independent and their family caregivers manage stress. Home Instead CAREGivers provide older adults companionship and assistance with meal preparation, light housekeeping, medication reminders, shopping and errands - thus providing a valuable respite for weary family caregivers, as well.

"Our services can be just what harried family members need to help fill in caregiving gaps they may be experiencing, as well as to alleviate the stress and worry that caregiving can bring to their lives," said Hogan. "Most family caregivers agree that there are many rewards associated with this job, and that additional support can make all the difference."

Caregiver Survival Tools

If you're currently experiencing caregiver stress, try the following senior services survival tools recommended by Home Instead Senior Care:

  • Work Out: Exercise and enjoy something you like to do (walking, dancing, biking, running, swimming, etc.) for a minimum of 20 minutes at least three times per week. Consider learning a stress-management exercise such as yoga or tai-chi, which teaches inner balance and relaxation.
  • Meditate: Sit still and breathe deeply with your mind as "quiet" as possible whenever things feel like they are moving too quickly or you are feeling overwhelmed by your responsibilities as a caregiver. Many times you will feel like you don't even have a minute to yourself, but it's important to walk away and to take that minute.
  • Ask for Help: To avoid burnout and stress, you can enlist the help of other family members, friends, and/or consider hiring a professional non-medical caregiver for assistance. There is no need to feel guilty for reaching out.
  • Take a Break: Make arrangements for any necessary fill-in help (family, friends, volunteers or professional caregivers). Take single days, a weekend, or even a week's vacation; just make sure you line up your support system so you can be confident that your loved one is safe and happy. And when you're away, stay away. Talk about different things, read that book you haven't been able to get to, see a movie. Only a real break will renew and refresh you.
  • Eat Well: Eat plenty of fresh fruits, vegetables, and proteins - including nuts and beans - and whole grains. Indulging in caffeine, fast food and sugar as quick "pick-me-ups" also produce quick "let-downs."
  • Take Care of Yourself: Just like you make sure your loved one gets to the doctor regularly, make sure you get your annual check-up. Being a caregiver provides many excuses for skipping your necessary check-ups, but you cannot and should not compromise your health.
  • Indulge: Treat yourself to a foot massage, manicure, nice dinner out or a concert to take yourself away from the situation and to reward yourself for the wonderful care you are providing to your aging relative. You shouldn't feel guilty about wanting to feel good.
  • Find Support: Find a local caregiver support group, which will help you understand that what you are feeling and experiencing is normal for someone in your position. This is a place to get practical advice from people who are in your situation and to bounce off those feelings of stress, since everyone is likely to be in the same situation and can empathize.
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    Thoughts and stories from others
    1. July 22, 2011 at 8:00 pm | Posted by Dorothy

      My stepdad passed away about 3 yrs ago and my Mom had a complete mental breakdown and it took a solid month in a psychiatric facility to get her back somewhat. She has never been the same since. She was diagnosed with a form of scizophrenia, depression which she had all her life and she stays very confused most of the time. Figuring things out or reasoning is very difficult for her. When she had her breakdown her insurance did not cover the entire stay at the psychiatric facility and it left her with no savings at all. All we have for her support is her social security, which goes because we have to have a caregiver come in to stay with her 5 days a week while we're at work. Between her mental state and mood swings my stress level is at peak on a daily basis. Her caregiver is wonderful with her she takes her out shopping, out to eat, etc. However, my Mom thinks this should continue after she leaves too. The weekends are not ours because I have to make sure she doesn't get to depressed or bored and crack. Sometimes she thinks we owe her all our time and money for extras and expects things. I can't even buy for myself without her thinking she's being left out. She voices her anger to her caregiver and this really hurts. We've worked very hard to get where we are and are still working to keep everything going. We are trying to keep things as normal as possible for her even giving her caregiver a credit card to buy things she may need or want with limints of course. But she feels cheated still. No matter how hard I've tried to reason with her she says yes, yes, yes but I can tell she doesn't mean it. I guess there are others out there who feel the same and may have similar situations but I feel sometimes I'm the only one with a mom that has so many mental, and psychiatric troubles. I work a full time job, my house doesn't get the care it needs because I come home and can't focus on those things I have to focus on her from the time I get home until I go to bed everyday 7 days a week. I guess I wearing down more and more lately because I don't have patience with her attention getting antics, She coughs, and bangs the table when she does, she acts out like a child when she wants attention. The most serious thing she did was try to harm herself by hitting herself in the head many times with a glass paper weight which put her in the hospital. She is now on antipsychotic medication to help with her mental state. She's stable now but I always have that fear in the back of my mind that if I pressure her to much she'll try it again. We are doing our best and try keep normalcy as much as possible but you know what, I'm tired. This is a pretty tough one isn't it?


      • February 25, 2013 at 12:26 am | Posted by Stacie

        OMG, reading your story is like looking into a mirror at our family life now. One year ago we evacuated my mom & dad for what we thought would be an overnight to help dad w/ his new oxygen situation during a hurricane. He collapsed the morning of the storm, and that was the beginning of the end. He spent 3 months in hospital, released to one rehab center, developed severe internal bleeding, back to hospital, then rehab for rest of 120 days medicare pays. He was forced to leave, came to our home for one month, then passed away. Mom has suffered undiagnosed depression and psychosis most of her life and it escalated during this period. Life as we knew it is over. She is brutal with her mood swings, violent behavior, self centered attitude etc. My husband and I are 50 w/2 kids in college. We are strapped financially and because of her mental health issues we don't qualify for state assistance, etc. What everyone doesn't get is the added stress we have with the mental health issues combined w/dementia. I am a therapist and need to work as does my husband and she needs supervision and is so demanding. I totally feel for your situation and please know you are not alone.


    2. May 13, 2011 at 3:34 pm | Posted by Sherry

      How different is the situation when the patient is your spouse? I'm floundering here. AND I have a parrt time caregiver to help out.


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