I’d love to know, in six words, what it’s been like for you when you call agencies and organizations (like the Area Agency on Aging, the Veterans Administration, the Alzheimer’s Association) to get help. You could be calling to find help for yourself (like a support group) or help for your caree (like Meals on Wheels, benefits through the VA). And, if you’d like, you can include a mention of the organization prior to your story.

So, if your experience has been good calling an association called The Association of Like-Minded Individuals, a six-word story could be:

The Association of Like-Minded Individuals: I hung up feeling incredible relief.

If, on the other hand, your experience has been not-so-good contacting a group called The Unlike-Minded Individuals of America, your story could be:

The Unlike-Minded Individuals of America: I hung up ready to cry.

Feel free to share as many stories (good, bad and anything in between) as you’ve got. When you share, you’ll have a chance to win Take Comfort, the book and CD set. Share your stories through Sunday; we’ll announce the winner of the CD set on Monday. Thanks so much for sharing!

Reminders: Amy joins me for Table Talk on Your Caregiving Journey on Saturday at 10 a.m. ET (9 a.m. CT, 7 a.m. PT). And, be sure to join us for our Super Sunday Open House on Sunday! We begin at Noon ET with a 15-minute meditation.

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Anna shared a great example of what it’s like when we resist the reality of our today. It’s like how we may feel when we’ve gained weight, she said, and yet we don’t face the truth about our real weight.

When we accept our weight, then we accept our size, then we wear clothes that fit. That acceptance means we have a chance to be better because we accept who we are. And, when we accept, we can change. We can lose weight, incorporate exercise, make different food choices.

We all know what it feels like to be at a weight we don’t want. Because we don’t want our weight, we continue to wear clothes that don’t fit. We start each day in a battle with our closet because we can’t find anything to wear, simply because we refuse to own anything that actually fits. So, we squeeze into our past, feeling awkward and uncomfortable in our present, dreading what we face tomorrow.

It’s the same with caregiving. The experience gets harder and more intense. It’s important to adjust the amount of help, support and time off you receive as the experience grows bigger. If you still have the amount of help you needed when the experience was smaller, then you’ll be stuck in a place of exhaustion, resentment and anxiety. You’re not wearing the caregiving size that fits.

To make sure you stay right-sized in caregiving, Anna suggests picking a day each month to check in. You can ask yourself a question like, “What can I change or adjust or modify so that caregiving fits better today?”

As you accept today’s reality, be compassionate and gentle with yourself. Accepting with compassion means giving yourself the chance to feel good wearing the size that fits.

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The handbook includes tips for for the “Expectant Caregiver,” the individual expecting a caregiving situation in the future. At that time, in 1998, those of us the in the eldercare industry faced a huge obstacle in reaching those pre-caregivers. As know, very few prepare for caregiving. Recently, though, I can see a shift, that many now understand that caregiving may be a part of their future. It’s no longer about “if” but about “when.” At some point in our lives, we all will be caring for a family member or friend. And, for some, the caregiving experience may be one repeated a few times.

Last year, when I updated The Caregiving Years handbook, I reflected on what I learned in the 13 years since publishing the first edition. I realized that how you manage the experience can be influenced by how you are when you start the experience.

So, in the fourth edition, I added these tips in The Expectant Caregiver section for what you can do before caregiving begins :

Take time to sort out your own issues.
It’s easy to overlook these issues when life seems easy. Caregiving, especially as it intensifies, will make life hard. And, it’s harder if you have unresolved emotional work as it relates to your caree or other family members…If you have difficulty standing up for yourself or finding your voice, this is a good time to work with a therapist or life coach to gain confidence in your decisions and your voice.

Do you struggle with the idea of asking for help? Now is a good time to figure out why and start practicing. Knowing how and when to ask for help is a great skill, which will become a huge asset for you.

“The Four Agreements, A Practical Guide to Personal Freedom,” a book by Don Miguel Ruiz, offers insights about our personal codes of conduct. As your caregiving journey continues, you’ll interact with family, friends and health care professionals who will drive you nuts. This book will give you the tools so you can stay sane.

Find your best shape―physically and financially. 

Find a work-out routine you like. Maximize the amount of healthy foods you eat. Pay off your debts. Save as much as you can. Uncomfortable managing money? Read books and take classes (online and in your community) to become comfortable. You’ll need to be at your best―physically, emotionally and financially.

Learn your caree’s life story. 

Document the story in a journal, video or audio recording. Collect recipes, photos, letters, poems and records that reflect your caree’s life and achievements. Ask questions about your caree’s childhood, parents, siblings and first loves. Involve other family members, including children, in the discussions.

Begin each day with the knowledge that you have love. 

Perhaps the toughest battles in caregiving begin within. Most battles really are about whether or not you are loved―by your caree, by other family members, by friends, by your significant other. End the battle now: Know you have the love. Know it now so you can remind yourself later.

In November, I spoke at a caregivers conference in Gwinnett County, Georgia. During the conference, Rabbi Scott Saulson delivered a workshop entitled, “What About Me? What About Us? Tiptoeing through the Mindfields of Caregiving.” During his presentation, Rabbi Saulson said:

If you know who you are, caregiving will be easier.

Exactly. There’s no better time to find out who you are then before a stressful life event like caregiving. A secure sense of self provides that all-important anchor when stress would like to swing you off your feet.

I’m wondering: What issue would you have resolved before the intensity of caregiving began? Please share your thoughts in our comments section, below. We’ll choose a winner to receive a copy of The Caregiving Years handbook.

Reminders: Table Talk on Your Caregiving Journey airs at 10 a.m. ET on Saturday. Kristin joins me to update us on her recent five-day break. Listen here. Our next chat on Twitter takes place on Sunday, January 22, at 8 p.m. ET. To join, go to tweetchat.com and enter our hashtag: #carechat.

Book Sale: You can save 20% on my books, including Take Comfort and Take Comfort, Too. Just use coupon code PRICETHAW at check-out. Buy here.

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In the press release, I explain how hard it can be to find help. To prove my point, I checked out stats on the National Family Caregiver Support Program (NFCSP). The program, established in 2000, receives its funding through the U.S. Administration on Aging (AoA). On its website, AoA says that the NFCSP “provides grants to 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 their loved ones at home for as long as possible.” NFCSP helps family members caring for persons 60 years of age and older, regardless of income. If your caree is over 60 and you need help, NFCSP could be a resource for you. (If your caree is under the age of 60, you are out of luck.)

In essence, the states receive funding, then funnel the money to the local Area Agencies on Aging (AAA). You have a local Area Agency on Aging in your community. (You can go here to find yours.) The local AAA may offer programs like Meals on Wheels and senior nutrition sites.

To help family caregivers, the AAAs receive funding to provide the following services:

1. Information about available services,
2. Assistance in gaining access to the services,
3. Individual counseling, organization of support groups, and caregiver training,
4. Respite care, and
5. Supplemental services, on a limited basis.

According to AoA’s website, NFCSP served more than 600,000 caregivers in FY2008, the most current year with program data. Specifically:

1. Access Assistance Services provided approximately 1.3 million contacts to caregivers assisting them in locating services from a variety of private and voluntary agencies.
2. Counseling and Training Services provided over 141,000 caregivers with counseling, peer support groups, and training to help them better cope with the stresses of caregiving.
3. Respite Care Services provided more than 73,000 caregivers with 9.8 million hours with temporary relief – at home, or in an adult day care or institutional setting – from their caregiving responsibilities.

The budget of $153,439,000 provided 73,000 family caregivers with 9,800,000 hours of respite. That means each family caregiver received an average of 134 hours per year. Or 5.5 days of 24/7 respite per year. Or 2.5 hours of respite per week for one year. Or 11.2 hours of respite per month for a year.

I’ve written (well, actually, ranted) in the past about how money is used and family caregivers are helped (see the links to articles, below). This one really confuses me. I think we can safely say the program is horribly underfunded. But, if only 600,000 family caregivers receive help, is the program also poorly administered?

Bear with me as I do the math (and please correct me if you see any errors). National Alliance for Caregiving estimates the total figure of U.S. family caregivers to be about 66 million. (Read a recap of the latest survey of family caregivers here.) This figures includes caring for individuals under 60 years of age, like spouses and children. Seven in ten care for someone over age 50.

For our purposes, let’s conservatively say that 33% of the 66 million care for someone over 60, making them eligible for NFCSP. That’s about 22 million family caregivers. Only 600,000 were served through NFCSP. That’s only about 3% of the 22 million family caregivers. (I’m assuming that some of the 600,000 received duplicate services, i.e., called for referrals, attended a caregivers conference and received a break which is why 1.3 million plus 141,000 plus 73,000 does not equal 600,000.)

And, only 73,000 family caregivers received a break. Only .3% (yes, less than 1%) of 22 million family caregivers received respite through a program that’s funded through their tax dollars.

The 73,000 received 9.8 million hours of relief. I’m struggling to do the math with this one. If each hour of respite cost an average of $20, then the respite budget ($196,000,000) is greater than the program’s total budget ($153,439,000). If the average cost per hour of respite care is $10, then the respite budget is $98,000,000, leaving $55,000,000 of the program for referrals and training?

I really can’t get my head around this one.

I’d love know:

1. What’s the administrative cost to operate the program?

2. How often do family caregivers call for help but not receive any?

3. Which respite service is used most often? Adult day centers? Home health? Nursing homes?

4. How many family caregivers does AoA want to reach through the program? If they don’t reach this number, why not? Which corrective actions can solve the problem?

5. Do any of the AAAs have a waiting list of family caregivers who need help?

6. How do the AAAs account for how they use the program funds?

It would be helpful if AoA included answers to questions like these on its website. An honest assessment of the program could go a long way to improving it. An improved program means more family caregivers get help.

In our annual family caregiver survey, we ask family caregivers if they are happy with services in their communities; in 2011, just about 55% said they are. We also asked which services they’d like to see more of in their communities. “Financial aid for caregivers” topped their list, followed by support groups, caregiver conferences and counseling services.

What do you think? What’s been your experience when calling your Area Agency on Aging for help? Have you received help through the Family Caregiver Support Program? Please share your experiences in our comments section, below.

Additional Commentaries

A Theme for You
Inside the Community of Caregiving
Do We Need a POA for Love?
Losing My Cool Over Research
What If We Also Invested in People
When Researching for Tomorrow, Pay for Today’s Help

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Today, we’re raising money to help Amy, who will be our fourth family caregiver we’ve helped. She’s been caring for her parents since 2002. Prior to caring for her parents, she lived with and cared for her grandmother. Amy is 31-years-old. You can read her blog here.

Our goal is to raise $500 to help Amy, who writes, “I would love to be able to pay off most of the small medical bills that my parents have and also be able to get a check-up for myself so that I can be my best to care for them. I am doing all I can but it seems to keep getting harder to do. So any help would help. Thank you for this opportunity to get my story out there.” You can help with your donation of $5. (If you want to give more, we’ll take more.)

I’ve asked Amy to share her three top challenges; they are (in her words):

1. Money for medical bills.
2. Money for my health care becasue my parents need 24-hour care. I am unable to work.
3. Facing eviction.

After Amy receives her $500, she’ll share how she used it and its impact on CareGifters.org and Your Caregiving Journey talk show.

You can donate below. CareGifters is operated through The Center for Family Caregivers, a charitable organization. We use PayPal to process your donation. (Please note: The Center for Family Caregivers does not currently have tax exempt status with the IRS so donations are not tax deductible.)

Thanks so much to all who help!!!

And, if you are a family caregiver in need and would like to be considered in the future to receive CareGifters funds, fill out the application here.

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Currently, National Alliance for Caregiving estimates that 66 million persons provide care for family members with chronic illnesses, diseases and injuries. In the future, that number is expected to grow as the baby boomers grow older.

Family members step in to care. But, who helps them? Ask any family caregiver and they’ll tell you about a health care system that offers spotty, if any, help for the family caregiver. But, without help, family caregivers become stressed and burnt-out. (Wanna hear what it’s like to be a burnt-out family caregiver who doesn’t have help? Go here to listen to our recent talk show with Kristin, who cares for a family friend. Or, read Amy’s blog here.) And, without family caregivers, who in the world helps out all those carees who need help?

What’s the answer? How can communities help prevent family caregiver burn-out so that caregiving can continue? We addressed this question during Tuesday’s call-in episode on Your Caregiving Journey talk show; you can listen to our show via the player below. During the show, I shared an idea for a no-cost solution available in all our communities:

Ask former family caregivers to volunteer to help today’s family caregivers.

I often say that the best resource for a family caregivers is another family caregiver. I also believe the best help for a family caregiver is a former family caregiver. Think about all the skills, knowledge, tricks and tips that a former family caregiver has. And, just think how helpful that former family caregiver can be. The help could be respite care (staying with the caree so the family caregiver gets a break). Or calling the family caregiver once a week just to check in. Or calling the caree so the family caregiver can take a few moments to himself/herself. Or, for the long-distance family caregiver, visiting the caree once a week.

So, how do we tap into these former family caregivers and use their skills and knowledge base? By creating a way for these former family caregivers to advertise their availability as volunteers as well as a way for today’s family caregivers to find these volunteers.

Enter SharingStore.com, our classifieds site for previously-owned caregiving supplies, equipment and devices. It’s also now a site to find caregiving volunteers.

If you’re a former family caregiver who would like to volunteer, either in person, over the phone or via email, simply place a free ad on SharingStore.com. Just go here to learn more and to place your ad.

If you’re a family caregiver looking for a volunteer, simply stop by SharingStore.com and search for volunteers in your area or your caree’s area. It’s free to find and connect with a volunteer. Go here to learn more. And, check back on SharingStore.com regularly; we’ll be working to recruit volunteers ready to help you. (We only connect you with possible volunteers; you’ll want to do your due diligence on any volunteer you consider to ensure a good match.)

Thanks to all who volunteer!!

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XXXXXXX

And hugged:

OOOOOOO

And, know that, even though you may not hear it very often (and often enough), what you do is wonderful, heroic and nothing less than admirable. You are treasures to your family, to your community, to us.

Share the love!: Please feel free to forward these hugs and kisses to others who are family caregivers.

XXXOOOO

–Do you have a family caregiver in or life? Learn simple ways you can make a big difference in their lives.

–Listen to a special message from Denise: Kiss_A_Caregiver.

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Chances are you do. Survey data released from the National Family Caregivers Association (NFCA) indicates that almost 54 million Americans provide care to an elderly, disabled or chronically ill friend or family member.

November 22 is your day to show your appreciation for the family caregiver in your life. And, it’s easy–all you have to do is give him or her a kiss!

But November 22 is just the start.

Family caregivers do so much; they provide ongoing support, love and medical care to a family member in need. Their job is difficult, overwhelming and exhausting. They may often feel depleted–of physical energy and emotional strength.
And, that’s where you come in! You can help a family caregiver feel revitalized and renewed. We’ve put together a few ideas to help you get started:

1. Call the caregiver on a regular basis to find out how he or she is doing. Listen with an open heart–and a non-judgmental ear. You don’t have to solve the problems–just listening is the best help you can offer.

2. Volunteer to stay with the caree one evening or afternoon a week, every other week, or every month–whatever you can offer. Encourage the caregiver to enjoy the break–and not worry about you or the caree.

3. Send a note expressing your love and admiration for the family caregiver.

4. Encourage the family caregiver to keep up their own interests and hobbies–and help them find the time needed to do so. Often, family caregivers feel that they’ve lost themselves, that their own personalities somehow got “fuzzy” or out-of-focus. Ensuring a family caregiver has the time and support to pursue their own interests fights off the “fuzzies.”

5. Lessen the caregiver’s load by running errands when you can. Offer to pick up groceries, medications, whatever the caregiver needs.

6. Call the caregiver and say, “Don’t worry about dinner. I’ll bring it over at 5:30.” It doesn’t have to be fancy. It just has to be from you.

7. Be a library runner. Ask the caregiver what books/videos he or she would like from the library. A good book or great movie can be a refreshing break for a caregiver.

8. Offer to make phone calls on behalf of the family caregiver to learn about community services that can help.

9. Stop for a visit–with the family caregiver and the caree.

10. Share a hug! Caregivers give so much of themselves–they need regular “hug replacements.”

Thank you for your support–you have the opportunity to make a tremendous difference in the life of a family caregiver.

Unfortunately, the sudden confusion, known as delirium, among the hospitalized elderly is an awful side effect of an inpatient stay. Your caree is hospitalized for one reason but, because of the hospitalization, becomes worse.

On Friday, The New York Times New Old Age Blog featured a program that helps those hospitalized elderly suffering from delirium. (You’ll want to bookmark the article, Preventing Hospital Delirium, because you’ll find the tips to be incredibly helpful). The Hospital Elder Life Program (HELP), developed by Dr. Sharon K. Inouye and colleagues at the Yale University School of Medicine, has been adopted by more than 200 hospitals. According to the HELP website, two million older Americans this year will develop delirium and functional decline during a hospitalization.

The HELP program offers tips for clinicians to help prevent delirium in hospitalized older adults, including meeting the patients’ needs for nutrition, fluids, and sleep as well as keeping them as mobile as possible. The website also offers tips for family caregivers to help prevent delirium in their hospitalized caree. You can read the tips here.

What’s been your experience with delirium in your hospitalized caree? Please share your stories and tips on how to cope in our comments section, below.

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Image by Aine D via Flickr

Help Around the House for Family Caregivers

Job Jar Day, A Family Caregiver Awareness Day, is October 22

More than half of family caregivers go it alone in caregiving. And, more than half describe the caregiving experience as “very stressful” or “stressful.”
~ 2011 Family Caregiver Survey Results, Caregiving.com (For more survey results, visit here.)

To help you get around your house (or your caree’s house), we’ve created Job Jar Day. On October 22, we’re asking others to pitch in and help you for at least two hours.

Want to get your family involved, but not sure how? Send them a copy of our press release with a note: “Would you be able to help me? I would be most grateful.” If your family is not available (or willing) to help, then ask your church, senior center and any other service organization (such as Boy Scouts, Girl Scouts) for help. You also can the forward the press release to your local newspapers and radio and TV stations and ask them to help get the word out. Remember: Your family may not help. But, there is help for you in the community.

Not sure what you need help with?

We’ve got suggestions. Ask for help:

1. Installing grab bars in the caree’s bathroom.
2. Adding no-skid backing on all throw rugs.
3. Weeding the garden.
4. Mowing the lawn and raking leaves.
5. Cleaning out the refrigerator.
6. Making, and freezing, enough meals to last a week.
7. “Winterizing” the home, preparing storm windows, cleaning the fireplace.
8. Washing windows.
9. Re-painting areas on walls marked up by wheelchair traffic.
10. Giving the caree’s bedroom a deep cleaning.
11. Cleaning the car that the family caregiver and caree use.
12. Getting caught up on laundry.
13. Mopping floors.
14. Organizing closets.
15. Re-arranging furniture to best accommodate care needs.
16. Removing stains on furniture and in carpeting.

Feel free to share more ideas in our comments section, below.

When your family members do come to help, keep the day simple. Refrain from discussions that make everyone crazy. Let go of any resentments or anger you may feel toward family members, however warranted, for the day. Express gratitude for their help.

We hope Job Jar Day helps!

***

Job Jar Day is one of four Family Caregiver Awareness Days Caregiving.com has developed; Kiss a Caregiver, Cook for a Caregiver and BBQ for a Caregiver (new in 2012) take place annually in November, March and July respectively. Through these days, Caregiving.com hopes to create awareness of the family caregiver role within the community and within the family. And, they create opportunities for other family members to get involved. Sometimes, both family members and family caregivers struggle to communicate effectively with each other; the Awareness Days try to eliminate some of the communication anxiety. For more information, visit www.caregiving.com. Or, email Denise at denise@caregiving.com.