Q. Who were you caring for?
A. My mom.

Q. How long did you care for her?
A. Approximately 4 years as a secondary caregiver. My sister and her husband were her primary caregivers.

Q. What type of condition or illness did she have?
A. Early-onset Alzheimer’s, asthma, COPD, diabetes, and arthritis which affected her mobility.

Q. What did your caregiving experience teach you about yourself?
A. I started learning how to accept that I could not provide all of the care that my mom required while managing my own chronic health issues and that it was okay to ask for help. 

Q. If you had one piece of advice for those in the throes of caregiving, what would it be?
A. Although caregiving is a 24/7 job, try and find time to "just be" with the person you are caring for. Find time to do simple things together that bring joy. In my case, we both loved shopping for plants, going out for lunches at our favorite restaurant, and doing 1000-piece crossword puzzles together.

Kristine, her service dog, Carlie, and her mother, Judy, enjoy an afternoon shopping at the Garden Factory in Rochester, New York. 

When Others Help Empower Your Journey

In this podcast "Burned Out, Angry, Ready to Leave -- Then Everything Changed" (18 minutes), Dave Nassaney talks about the loneliness and guilt he felt after his wife had a stroke and he became her caregiver. Everything changed and he found hope when he started attending a caregiver support group. He is the Dave behind the "Caregiver Dave" website, books, and social media. You can find the podcast here.

If you feel a caregiver support group might be helpful, you can find a comprehensive list of groups and organizations throughout the state on the NY Connects website. The Caregiver Support Foundation website is also a great resource.

Good Sleep for Good Health and Better Caregiving

Up to 76% of family caregivers experience poor sleep quality, with 60% sleeping less than 7 hours, according to the National Institutes of Health. Quality sleep is essential for caregiving, but caregivers often neglect it. Sacrificing sleep to meet the needs of others can result in chronic sleep deprivation, impacting your health, emotional state, and quality of care.

Join one or two 20-minute sessions that will help you find ways to enhance your ability to get the sleep that you need and deserve. This and many other offerings can be found online on NYS Office for the Aging GetSetUp.

Register for a session today!

April is Autism Acceptance Month

Managing Care for Someone with Autism Spectrum Disorder and Managing Your Own Wellbeing

Autism, or autism spectrum disorder (ASD), encompasses various conditions marked by repetitive behaviors, difficulties in social skills, and communication. According to the Centers for Disease Control, it currently affects about 1 in 31 children and 1 in 45 adults in the U.S.

While autism is typically diagnosed around age 5, it is a lifelong condition and an autistic individual's needs and challenges can change over time, altering their support requirements.

If you’re a caregiver for someone with ASD, here are some tips for taking care of your own needs, provided by Autism Speaks:

• Ask for help

• Keep a journal

• Enroll your child in recreational activities: Here are two great resources: Autism and recreation and Tips to create inclusive sports and recreation activities.

• As a parent, trust your gut

• Prioritize daily tasks

• Monitor your time online. While some things on the internet can be very helpful, social media especially, can lead to fear of missing out, unrealistic social expectations and comparisons, and misinformation.

You can also find this Resource Guide and more caregiver information on the caregiver page of the Autism Speaks website.

Rebecca Gayheart Opens Up About Her Role as a Caregiver for Hollywood Star Eric Dane

Caregiving impacts most of us at some point in our lives, either as a caregiver or care receiver. It touches the lives of all, including celebrities. Celebrities like Emma Hemming Willis, Bradley Cooper, Queen Latifa, and many others have faced the challenges of caring for a loved one.

After the recent loss of Grey’s Anatomy star, Eric Dane to ALS, his wife, actress Rebecca Gayheart, is speaking up about her experiences. She shared her thoughts on caregivng and more in a recent interview with National Public Radio.

Environmental Modifications at Home for People with Intellectual and Developmental Disabilities (IDD ) (Part 4 of NYSCRC’s 4-part webinar series): April 8 from 1:00-2:00 PM ET.
Learn about each of the primary seven senses and how to use that information to modify the environment for older adults with IDD. Discover recommendations to help support caregivers, as well as organizations that provide residential placements. Learn more and register here. View the first three webinars of this four-part series on our YouTube Channel.

Paid Family Leave Webinar for NY Employees: April 9 from 12:00-1:00 PM, ET. Since Paid Family Leave was established in 2018, there have been a number of enhancements. You can learn and ask questions about this employee-paid program during this free webinar. Learn more and register here.

Planning for Care: Why Financial Planning Matters for Family Caregivers: April 30 at 2:00 PM, ET. Caregiving typically starts from a place of love and duty, yet it can also present unforeseen financial hurdles for families. Discover the importance of having a plan in place before crisis, key financial considerations, practical first steps in building a financial plan, and more. Find details and registration here.

Powerful Tools for Caregivers: Every Thursday from 10 – 11:30 AM, May 21 through June 25: This is a virtual six-week educational program focused on the needs of family caregivers of individuals with chronic conditions. Participants will develop a variety of self-care tools to reduce stress, change negative self-talk, communicate more effectively with family members and healthcare providers, deal with difficult feelings, and make tough caregiving decisions. Learn more and register here.

NY ABLE Webinar: Discover how those with disabilities and their families can learn to save for qualified disability related expenses without limiting their access to federal benefit programs like SSI, DDSI, and Medicaid if meeting certain requirements. There are four sessions to choose from in April and May.
Learn more and register here.

Are you caring for a Veteran? If so, you may be eligible to receive:

• A monthly stipend (paid directly to you as the caregiver.)

• Access to health care insurance through the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), if you do not already have health insurance.

• Mental health counseling.

• Certain beneficiary travel benefits when traveling with the Veteran to appointments. For specific details, please contact your CSP Team.

• At least 30 days of respite care per year, for the Veteran. Respite is short-term relief for someone else to care for the Veteran while you take a break. Find more details here.

Do you pay a provider to care for your loved one?
If you have hired someone to care for a loved one in your home, you may be considered a household employer. As the tax-filing deadline approaches, make sure you are aware of the rules. Learn more here.

Siblings and Help Caregiving From a Distance
Family dynamics on their own can be challenging, but add caregiving and an out-of-town sibling into the mix and it could be a recipe for some serious tension. Family therapist and clinical psychologist Barry Jacobs of AARP writes about this in a recent article entitled, Our Long-Distance Sister Questions How We Care for Aging Parents.

It’s Time to Show More Compassion

As caregivers, we exhibit boundless compassion for our loved ones, yet we frequently overlook the compassion that we owe to ourselves. Research shows that practicing self-compassion can alleviate burnout and exhaustion, boost the quality of care, foster emotional wellbeing, diminish feelings of guilt, and contribute to sustainable caregiving.

Dr. Kristen Neff, Associate Professor of Human Development and Culture, Educational Psychology Department, University of Texas at Austin offers a self-compassion practice.

NY Connects links individuals to long-term services and supports regardless of payment source/health insurance, whether it be private pay, public or a combination of both. Through the provision of free, comprehensive, objective information and assistance about long-term services and supports, NY Connects empowers individuals and families to identify available services and supports and choose what will best meet their needs at home, in the community, and as necessary, in residential or institutional settings.

To learn more, call: 1-800-342-9871 or visit www.nyconnects.ny.gov 

This project is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $1,375,000 with 75 percentage funded by ACL/HHS and $458,330 and 25 percentage funded by non-government source(s). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, ACL/HHS, or the U.S. Government.