Eleven Years Later, Caregiving Is Still Difficult (and Perhaps Getting More Difficult)


Eleven Years Later, Caregiving Is Still Difficult (and Perhaps Getting More Difficult)

mountain-climbing-802099_640In May, Caregiving.com completed its annual family caregiver survey; 84 family caregivers answered questions about their caregiving experiences. The survey provides a snapshot of the day in the life of a family caregiver. (I discuss the webinar results in this webinar for family caregivers. If you work with family caregivers, I share recommendations for you to help your community's family caregivers based on survey results in this webinar.)

When compared to a snapshot of a day in the life of family caregiver in 2001, the results become a reflection of each other. Much of what family caregivers experience in 2012 is similar to what the 74 family caregivers experienced eleven years earlier, in 2001.

In both years, the majority of respondents were women caring for a parent between the ages of 80 and 90. In 2001, 39% of family caregivers were between 35 and 50 years of age; in 2012, 37% were between ages of 50 and 60. In 2001, 40% had children living at home; in 2012, 37% had children living at home.

Caregiving remains a long-term commitment. In 2001, 31% had been caring for between 2 and 5 years. In 2012, 26% had been caring for between 2 and 5 years; 26% between five and nine years, and 25% for more than ten years. It's a bit of a guessing game trying to determine how much longer caregiving will last--but it could be another ten years. In 2001, 63% were unsure how much longer their role would last. In 2012, 36% said they expect their caregiving role to last another 10 years.

The experience has intensified over the years, with more living with their carees* (66% in 2012 versus 44% in 2001) and providing constant care (61% provide more than 40 hours of care per week in 2012 versus 32% in 2001). A slight majority have help from family members (60% in 2012 and 53% in 2001).

It's interesting to note that family caregivers are actively involved in the health care system because of the caree's chronic condition. And, yet, in both 2012 and in 2001, family caregivers say that their family members and friends have been most helpful to them, more helpful than physicians, social service staff members and clergy.

And, in 2001 and in 2012, family caregivers rated their satisfaction level with community services. In 2001, 68% were satisfied with services in their community; in 2012, 50% were satisfied. It's also interesting to note what family caregivers wanted more of in their communities in 2001 is similar to what they want today. In 2001, they wished for more support groups and transportation services, followed by counseling services, case management services and adult day services. In 2012, they want financial aid for family caregivers (top choice); caregiver workshops or conferences (second choice); and counseling or coaching services and support groups (tie for third).

In both years, the survey asked several write-in questions, including:

"If you could make any changes in your community to help family caregivers, what changes would they be?"

Write-in answers to that question from 2001 include:

  • "I would like to see a program on TV that teaches how to give care--full of advice and instruction about how to seek help in your community."

  • "Respite care is what we need once in awhile."

  • "I can't believe the system will functioning in 20 years. We can't get or afford reliable workers now and I am not counting on much help when I get older."

In 2012, family caregivers said they want:

  • "More resources. And a clearinghouse of resources that is relevant and kept up to date. And a place to call where people answer the phone, not an answering system where you have to leave a number and wait (days) for someone to (hopefully) call you back."

  • "Make respite care easier to get."

  • "More awareness of the needs family caregivers have."

  • "More networking. More coordination among health care professionals as to what services are available."

  • "More local caregiving support group(s)."

In 2001, family caregivers said they would share this advice to new family caregiver:

  • "Don't wait so long to get help from Hospice."

  • "Schedule time for yourself because if you are down it's hard to find someone to step in."

  • "Seek all the help you can."

  • "Take care of yourself; have fun when you can."

  • "Do not take the task on by oneself. Having several caregivers involved keeps flexibility for all involved and keeps perspective on changing needs."

  • "Read, learn, talk to others who've been there. Fight fear with information and support."

  • "Don't get overwhelmed, don't stress the little details. Don't take (caree's) remarks personally."

In 2012, family caregivers offered their advice to a new family caregiver:

  • "Reach out for support to groups that have gone through the experience. There's no need to reinvent the wheel. Also, I would encourage them to not be afraid to speak up and question the doctor or other healthcare professional."

  • "Don't wait to hook up with a caregiver who shares a similar situation. Seek them out pronto and make them your mentor!"

  • "Immediately set up a support network for yourself. Learn how to ask for help EARLY. Take care of yourself or you will be unable to cope with the needs of your caree. Understand the stages of caregiving. TALK to somebody on a regular basis. Don't isolate. Don't be too hard on yourself."

  • "RUN !!!!! :)"

  • "Get connected with folks who are in the similar situation. Keep looking and asking for solutions to have help. Get away from caregiving completely every 6 months or more if possible even if you think you are okay!"

  • "Don't try and give care alone. You need others around you."

  • "You are a superhero but do not try to do everything on your own."

  • "Step back often, breathe and never allow your self to be forced to give quick answers or make quick decisions."

  • "Get connected with folks who are in the similar situation. Keep looking and asking for solutions to have help. Get away from caregiving completely every 6 months or more if possible even if you think you are okay!"

In 2001, family caregivers answered question, "What has been your greatest lesson learned as a result of your caregiving experience?":

  • "I've learned that people are so naive about caregiving. They spend money on saving a tree in California but won't send money to a sister to care for her mother. The public needs to be educated because it may happen to them, people live longer now."

  • "I spent a lot of time thinking about how much support is reasonable to provide and to decide firmly not to provide more than that. Secondly, I am dealing with an autonomous human being and therefore I may not be able to decide or determine what the outcome of any particular situation may be. In spite of many things I did to make it work it is not my fault if something doesn't go right."

  • "That I can adapt and experience contentment and fulfillment in this role, hard though it may be a lot of the time. Prayer does this for me."

  • "I am not the super woman I thought I was and counseling is a good thing. I also developed much more love for my parents and am glad I had this time with them."

  • "That listening is more important than expressing my opinion. That being compassionate is more important than being right or correct or accurate. That there is no substitute for patience and being relaxed."

And, in 2012, respondents shared their lessons learned:

  • "The only help that's out there is the help that I seek for myself. It won't come to me."

  • "I've learned what my weaknesses and limitations are. I've learned that this is, without a doubt, the most difficult job in the world."

  • "There is very little help. I have to depend on myself for everything. The health care system is very broken and no one cares."

  • "I can make decisions about what I commit to and if I overcommit the results are not pleasant."

  • "I am so resentful that my own life has been curtailed, I am evidently not as loving and caring as I thought I was. It has been so long now that I do things out of necessity and a sense of responsibility not because of my overwhelming love for them. Not a happy thing to realize about yourself."

  • "It's important to communicate honestly my emotional needs in caregiving."

  • "TRUST YOUR INSTINCTS. Often, what purports to be help is not, and the 'shoulds' dispensed by experts can prove harmful."

  • "It is not a crime or betrayal against the patient if you discuss your caregiving situation."

  • "I was right when I chose not to be a stay-at-home Mom."

It's clear that family caregivers still feel alone and isolated in their roles, that finding help requires time and tenacity and that connecting with other family caregivers can keep a family caregiver going.

The 2001 survey also corresponds with the launch of the Family Caregiver Support Program (FCSP). The Administration on Aging explains the program, established in 2000:

FCSP provides grants to U.S. states and territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for family members at home for as long as possible. Under this program, states provide five types of services:

  • information to caregivers about available services,

  • assistance to caregivers in gaining access to the services,

  • individual counseling, organization of support groups, and caregiver training,

  • respite care, and

  • supplemental services, on a limited basis.

Since much of the experience remains the same for family caregivers, how effective has the program been? The 2011 FY budget for the program was $153,911,000. I've written in the past about the program and have asked, "Is the program woefully underfunded or just horribly mismanaged?" Our survey results seem to indicate that the program is not having an impact. What could change so it does?

As more become family caregivers and look to their community for help and can't find it, will social service organizations and Area Agencies on Aging offices be prepared for what more and more family caregivers will demand? And, from our survey results, they really are just demanding clear information and easy ways to connect with other family caregivers. It doesn't sound like too much to ask.

Additional Results

We've added more questions throughout the years to our survey. The 2012 survey also included these results:

  • 61% said that they don't adequately take care of their physical, emotional, dental and medical needs. When asked why not, 50% of survey respondents said, "Somethings gotta give--and that's what gives."

  • 56% are in agreement with other family members about a caree's treatment plan and budget;

  • 26% have between two and four hours of time for themselves each week;

  • 40% say that the hardest time was when they were exhausted because they hadn't taken a break;

  • 70% say that managing emotions is the most difficult part of the caregiving experience;

  • 33% say they are stressed at times; 30% say they are very stressed;

  • 34% say the daily grind is most stressful;

  • 38% say they've lost some friends because of their caregiving role.

  • 54% said this is their first caregiving experiences; 27% said it's their second experience.

  • 69% of respondents care for one family member; 20% are caring for two; 11% are caring for more than two.

*Caree is the person receiving care (aka the "care recipient").


  • Purchase the 2012 Family Caregiver Survey Report for $9.95 here.


  • We tackle the question, "How do you avoid isolation?" in our next Hot Topics show on Wednesday, July 25, at 8 p.m. ET. Our panel of family caregivers will share their insights and suggestions. Listen to the show and join the chat room here.

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