Caregiving Concerns

Another Normal is a weekly newsletter devoted to the subject of helping young adults with disabilities bloom and grow.  Welcome to the new readers who have joined us over the past few weeks.  If this e-mail was forwarded to you, please subscribe here and join our community.

This week’s issue celebrates National Family Caregivers Month and everyone who is committed to being there for people who need help taking care of themselves.  

In the past year, more than 65 million Americans served as caregivers for a disabled or ill relative, according to the National Alliance for Caregiving.  Of these, more than 11 million are simultaneously caring for young children at home, too. Caregiving is truly a 24/7 job, and most of us are completely untrained when we take it.

If my experience is any indication, caregiving impacts our lives in positive and transforming ways, but it can also put a strain on work, homelife and other responsibilities.  As the pandemic continues, increased stress, worry and isolation can make caregiving even more challenging. The vast majority of caregivers I know simply soldier on.  This issue is dedicated to you. I hope you find it helpful. 

“Caregiving is universal.  There are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”  

-- Former First Lady Rosalind Carter

Did you know there’s actually a proven condition called compassion fatigue? It’s a broadly defined term that can include emotional, physical, and spiritual distress in those who provide care to someone else. Similar to caregiver burnout or second-hand stress, this condition strikes most of us at one point or another.  We love the people we help.  We know our work is important.  It can also be incredibly exhausting.  

Research shows that 40 to 70% of caregivers suffer from depression, and many also have anxiety because of the stress associated with providing care. Anger and irritability are also common.  And chronic stress may also lead to high blood pressure and a compromised immune system.

Maintaining our own health and well-being is crucial, but often difficult – especially for people used to letting their own needs take a backseat to the needs of others.  Sound familiar?  Consider these troublesome statistics from Harvard Health:

• 45% of caregivers report chronic conditions, including heart attacks, heart disease, cancer, diabetes and arthritis.

• Caregivers have a 23% higher level of stress hormones and 15% lower level of antibody responses than non-caregivers.

• 72% of caregivers report that they have not gone to the doctor as often as they should have.

• 58% of caregivers state that their eating habits are worse than before they assumed this role.

As we have all heard many times, it’s important to put your own oxygen mask on first. (It took me a very long time to learn this, I admit.) Here’s a good TedTalk on the subject.  Below are other suggestions to help you on your caregiving journey:

• Ask for and accept help. This doesn’t make you a bad caregiver.  On the contrary, allowing others to help makes you stronger.  Keep a list handy so when family and friends ask how they can help, you can give them a specific task to take care of.  

• Get up 15 minutes earlier and use the time just for you. (I’ve started doing this recently and can’t believe how much it improves each day.)  Sit with your coffee or tea.  Read or journal. Meditate, pray, stretch.  Whatever you want to do, taking time for YOU at the start of the day ensures you’ll actually attend to your needs before time escapes you and the day is done.  

• Utilize technology.  Smart home apps like Google Assistant or Amazon Alexa can help make daily caregiving tasks more manageable and less time consuming. 

• Take care of your own health.  Get enough sleep, choose healthy foods and make sure to keep up with regular checkups and screenings. Remember, life is a marathon — not a sprint.

• If you are feeling overwhelmed and also work outside the home, consider taking a break from your job. Check with your human resources office about options, including family-leave benefits.

• Don’t lose sight of your own identity.  What interests and skills make you ‘you’? Find ways to incorporate them into your life, despite the constraints of caregiving.  Ignoring this over the years can have a drastic impact on your overall happiness, believe me.

• When you stop and think about it, most of us come unexpectedly to care for a loved one with a disability. Often, we were simply living life. Then life happened to take an unexpected turn. Our skills, perspective and experience did not prepare us for the road ahead. This can be scary, but it doesn’t have to be a dead end. On the contrary, caring for a young adult with disabilities presents countless opportunities. We just have to stay healthy and happy enough to recognize them.

  It takes a village.

   

  All parts of our society have the responsibility to value family caregivers and create policies that help them help others as well as themselves. Health care systems specifically can provide more support to caregivers, many of whom do not volunteer for this role and are not given much choice about whether or not to accept it. Employers can use this toolkit to assist caregivers in the ever-changing world of Covid-19. These webinars offer opportunities for business and community leaders to discuss caregiver needs with experts in the field.  Such efforts are important steps to sustaining both the quantity and quality of assistance family caregivers provide.  Given the current shortage of paid caregivers, the need for family caregivers only continues to grow.   We must make their well-being a priority.  

  On the flip side.

   

  All this talk about caregivers got me thinking about the people we help. Do they get tired of being cared for? Is it stressful for them to advocate for their needs/wishes or change caregivers? Do they resent their reliance on others? If there’s even a slight chance this is true, we must work extra-hard to help young adults with disabilities be as independent as possible. This starts by helping them self-direct the way they’re cared for and by whom, to whatever degree they are able.

  Potential respite resource. 

  Community First Choice (CFC) is a part of the Affordable Care Act that provides home and community based supports, including personal caregivers, to people eligible for Medicaid.  It can be a valuable part of your financial plan if you are currently providing caregiver support to a loved one with disabilities.  Register here for a free informational webinar on CFC to be held November 12.