GREAT NEWS! President Signs Law to Support Family Caregivers!

[Jen]

The RAISE Family Caregivers Act has been signed into law. This bipartisan bill will focus on the needs and values of America’s greatest support system, YOU - the family caregiver.

The measure — the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act — had passed the House late last year. It directs the Department of Health and Human Services (HHS) to create an advisory council charged with making recommendations on the strategy to support family caregivers. The blueprint, which must be developed within 18 months, would address financial and workplace issues, respite care and other ways to support caregivers.

Every year, family caregivers provide about 37 billion hours of unpaid help for their loved ones. Caregivers often are responsible for managing a loved one’s medications and other health needs, as well as preparing meals and doing housework. Many provide this care while working full time and raising their own families. About 32 percent of family caregivers provide at least 21 hours of care a week.

“Family caregivers are the backbone of our care system in America,” said Nancy A. LeaMond, AARP’s chief advocacy and engagement officer. “We need to make it easier for them to coordinate care for their loved ones, get information and resources and take a break so they can rest and recharge."

LeaMond said that thanks to the efforts of the bipartisan bill's champions — Sens. Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.), and Reps. Gregg Harper (R-Miss.) and Kathy Castor (D-Fla.) — “the RAISE Family Caregivers Act will help address the challenges family caregivers face.”

Share your thoughts on this bill with us! 

[agoyer]

The passage of the RAISE family caregiver act is a big step forward! Having a national strategy regarding support for those of us who are caregivers (there are 40 million of us!) will surely help focus support, raise awareness, and hopefully improve services to help us do the important job we are doing and still be able to live our lives and juggle our work, family and self-care along with caregiving! 

Amy Goyer

AARP Family & Caregiving Expert

[debralar]

This is great news as I lost my job in October 2016 due to spending many hours taking my elderly Mom to hospitals and rehabs.  I started my own company but things have been so slow that we are barely making it.  Good news is after 2-1/2 years we found out my Mom had a Pheochromocytoma tumor and it was removed in June of 2017.  She is off all insulin and blood pressure meds.  Bad news is just when I thought things were getting better, my Dad fell off his mobility scooter today and broke his femur (86 years old).  I get so frustrated as I have not been feeling well and dealing with a bad cold.  Mom & I spent most of the day at the hospital.  I simpy need help as I cannot mentally continue to be their caregiver and run a real estate company.  I have no time to market the company as spending most of my days preparing meals, washing clothes and cleaning house

[agoyer]

@debralar I can imagine how you must feel overwhelmed! I always feel like our biggest problem as caregivers is that there are only so many minutes in the day! If we didn't need to sleep we'd get so much more done, right?! But alas we are human and need to sleep and take care of ourselves too! 

I often feel like it's a leaky hose - we plug one hole and then another leak springs just when we think we have things taken care of, improved, coasting, under control! That must be how you felt when your Dad fell! And these things can't be predicted, so we can only prepare so much. It's so frustrating! 

I, too, quit my job and became an independent consultant in order to care for my parents - about 10 yrs ago. My Dad is still living, although my Mom and my sister passed on. Dad lives with me and is 94 and has Alzheimers. I've learned that success isn't preventing the problems (falls, new diagnosis, etc.) because as much as I try I can't prevent everything or cure Alzheimers. Instead I view success as getting back up again when I'm on my knees (or flat on my back!) - just being there, traveling the journey alongside my loved ones is success. Maybe you could consider looking at things that way and I can tell you that feeling like as success is so much more useful than feeling like I'm dropping balls all the time and not doing anything 100%! I'm actually more effective, organized etc when my mindset is better. 

That said, again there are only so many minutes in each day! I don't know the specifics of your situation, but if I may offer a few suggestions for you to ponder, gleaned from other caregivers' input as well as mine, maybe something will resonate with you and help your situation! 

• You may feel like you can't take care of them and run your real estate company at the same time, and you're probably right on some level - but if you can build your team in some ways maybe it would free you up just enough to coordinate their care, provide some of it yourself, and also have more time for your work. 
• Think about the things on your to do lists (self-care, work, home, caregiving, family etc.) that only you can do - or that it's vitally important that you want to do. For example, do you need to be the one washing the clothes and cleaning the house? If someone else could do that, think about ways to find someone to do so. For example, another family member, volunteers, if your mom or dad is a Veteran, they can enroll in VA health care and ask if they are eligible for housekeeping help (we get 2 hrs a week of housekeeping for my Dad at no charge - it's not a lot but it helps - mopping floors, doing laundry etc.), call the Area Agency on Aging and ask if there are any free or low cost housekeeping, transportation, meal preparation etc. services that might help. You might try one of the meal delivery programs like Silver Cuisine, Hello Fresh, Blue Apron, Balance, Plated etc. (even if you do that once a week that might help free you up a bit and there may be leftovers for another meal). Another example is that I've always gone to my parents' doc appts with them as much as possible, but when they went for a simple teeth cleaning at the dentist I realized I didn't really need to be the one to take them, and the dentist could call me with any issues that arise. 
• Here is the link to AARP's Local Resources listings to help you find help locally. 
• Being organized is so key with so much on your plate! We have a lot of great articles on helping caregivers organize it all (and I'm working on a new one that will be up in the next couple of weeks! Here are a few to check out now though: 
  • Time Management for the Caregiver 
  • The Organized Caregiver 
  • Apps to help caregivers stay organized 

I hope these suggestions will help. You'll find more caregiving tools, tips and info at aarp.org/caregiving.

I truly believe you can find a way to keep caring for your parents and coordinating their care, while still having your business. But you can't do it all alone for sure! 

Please feel free to contact me if I can be of any help or if you'd like to bounce ideas around! Take care, and enjoy every precious moment with your folks! 

Amy Goyer

AARP Family & Caregiving Expert