The Unintentional Caregiver

For the majority of us, becoming an “unintentional caregiver” is (or will be) a guaranteed part of our life. 

According to the 2020 report from the National Alliance for Caregiving (NAC)   and the American Association of Retired People (AARP), 61% of unpaid caregivers are women, and at least 61% of all unpaid caregivers work other jobs. 

All caregivers need our support, access to resources, understanding, and compassion!

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Who is an “Unintentional Caregiver”?

In my opinion, an “unintentional caregiver” is anyone who has been thrust into the role of caring for a loved one, whether family or friend, with little to no warning, education, or preparation for caregiving.

The “Unintentional Caregiver” is rarely prepared to meet the needs of their loved ones, whether physically, emotionally, financially, or a combination of all three.

“Unintentional” does not mean that we have no love and/or compassion for the person we’re caring for – quite the opposite in most cases!

Most of us growing up don’t think of our parents, siblings, children, or friends needing short or long-term care from us.

Somehow, I never imagined that either of my parents needed my care!

After my mom passed, my dad was living alone.  At 80 years old, he was driving and was rear-ended by a school bus.  My husband and I lived in California at the time, and my dad lived in Washington, D.C.  We had to immediately fly to D.C., get his house in order, pack up his essentials, and drive back to California (he couldn’t fly because of experiencing a collapsed lung and fractured ribs) within two weeks.

My dad was also suffering from Sundowner’s Syndrome. Having no idea what help we needed, and both my husband and I having to go back to work immediately, we were blessed to have a social worker at the hospital in California tell us about in-home care. 

It was an experience.

Many family caregivers tend to wait until they are emotionally and physically exhausted before seeking help.

As a Certified Senior Advisor®, I felt compelled to create a toolkit about respite care.

The Family Caregiver Respite Care Toolkit gives you practical tools to be less stressed, more healthy, self-caring (without guilt!), and empowered to become a more balanced and abundant family caregiver.

Use my product as a guide for planning your well-deserved time of re-grouping, relaxing, reflecting, and looking after “YOU.” Of course, your loved one will benefit from respite care as well!

I’ve been there, and I get it!  Plan using respite care in the early stages of caregiving as a need for your continued well-being and that of your loved one.

The “Sandwich Generation” Caregiver: Who Are They?

An excellent online article in the journal, Kiplinger’s Personal Finance (August 26, 2020) called “Sandwich Generation Faces Caregiving Challenges” gives a clear definition:

“Sandwich generation caregivers are typically in their thirties, forties or fifties, taking care of younger children and parents at the same time.  But the definition can be far broader: About 11 million people nationwide are multi-generational caregivers, helping full-or part-time with children and parents, grandchildren and grandparents, siblings with special needs, even extended family, friends and neighbors.  And during the COVID-19 crisis, the usual stresses and multigenerational caregiving has been exacerbated.”

This group of “unintentional caregivers” makes up a large swath of the U.S. adult community.  They consist of 19% of the “Baby Boomer Generation” (born between 1946 and 1964), 49% of the “GenX Generation” (born between 1965 and 1980), and 32% of the “Millennial Generation” (born between 1981 and 1996).  This means that roughly fifty years’ worth of adults is currently providing some form of caregiving.

The toll on caregivers is not to be taken lightly – by others or by the caregivers themselves!  The article also states that:

“ A 2019 report by the National Alliance for Caregiving and Caring Across Generations produced some sobering statistics: Sandwich caregivers spend an average of 22 hours a week—the equivalent of a part-time job—providing help while often simultaneously juggling work. One-third report emotional distress, and one in five say they have a high level of financial strain.”

Caregivers Need (And Deserve!) Help on So Many Levels

One of my neighbors gave me this topic as an essential subject for my blog.

We both had experienced taking loving care of one of our parents, her mother-in-law, and were blessed to have caring spouses who helped in the caregiving.

The critical thing to realize is, that even with help, a caregiver will go through mental, physical, and social upheaval. They may be dealing with the unknown, chronic worry and an array of other emotions, physical fatigue, relationship strain, and often social isolation. 

Unfortunately, many people do not have the luxury of another family member or friend helping them or having the financial means to get help.

I had been the owner of an in-home, non-medical caregiver business. I realized just how many people desperately need (and deserve!) to get assistance in the comfort of their own home or in assisted living.

NOTE: Caregiving is not just about caring for seniors.

It encompasses people of every age, and with various physical and emotional needs.

Resources for Caregivers

Although not an exhaustive list, the resources below will give you a solid, basic foundation for your caregiver’s needs:

AARP Family Caregiving:

Scroll about halfway down the page, and you’ll find a vast amount of caregiver-related resources in their Caregiver Resource Center. Their “Caregiver Life Balance” page provides information to help caregivers cope in positive ways with their role as a caregiver.  You can also search under their “Local Resources and Solutions” page to find help in your area.

Caring.com:

Their “Caregiving Resource Center” page is a wealth of information and has listings of resources by state.

This site is a fantastic resource for any type of caregiver.

Family Caregiver Alliance: 

Providing their information in multiple languages, the Family Caregiver Alliance is an invaluable resource for assisting the needs of caregivers and those needing care:

“For more than 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s, and other types of dementia. Our services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.”

The alliance offers nationwide resources such as:

• FCA CareNav: A secure online solution for quality information, support, and resources for family caregivers. Anyone from anywhere can receive tailored information and resources by answering an online questionnaire and receiving follow-ups by FCA staff.
• Their Services by State helps caregivers locate support services across the U.S.

Medicaid Planning Assistance:

MedicaidPlanningAssistance.org is a free service provided by the American Council on Aging.

This section focuses on how to receive financial compensation through Medicaid to provide care for a loved one.

Mental Health America:

A section of MHA’s website discusses in detail the rights of caregivers to medical information when a loved one is experiencing a mental health crisis.

National Alliance for Caregiving: 

For the caregiver, this is one of the best resources for help.

You can sign up for their newsletter, and their Resources Page should be bookmarked or printed out for your convenience! Also, scroll down to the bottom of the home page to find additional resources called “Caregiving for Persons with Disabilities”. 

National Institute on Aging (section on respite care for caregivers):

“Provides comprehensive section on caregiving for those who take care of a friend or family member with a serious health condition, including information on long-term care, advance care planning, long-distance caregiving, and Alzheimer’s Caregiving as well as articles responding to FAQs. NIA’s End-of-Life Care section of website that addresses myriad concerns, including Making Difficult End-of-Life Decisions, Advance Directives, Support for Caregiver, including information on Respite Care. Sections of website offered in Spanish.”

“Respite care” greatly benefits the caregiver in that “it provides short-term relief for primary caregivers.

It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.”

National Resource Directory:

“Comprehensive website for wounded, ill and injured Service Members, Veterans, their families and those who support them. Provides access to services and resources at the national, state and local levels to support recovery, rehabilitation and community reintegration. Provides information and resources on a variety of topics including benefits and compensation, education and training, employment, family and caregiver support, health, homeless assistance, housing, transportation and travel and other services and resources.”

SibNet:

“SibNet is a remarkably thoughtful, nonjudgmental community of adult sisters and brothers of people who have disabilities. On SibNet, we share: concerns and challenges–but we also share insights and joys that only other sibs are likely to understand; and information about services, resources, and strategies that help members advocate for their brothers and sisters, themselves, and their families.  SibNet is a “closed” group. Only adult siblings of people with special needs may be members.

To join SibNet on Facebook, click here.”

Research Caregiver Resources in Your Area for Help and Educational Tools!

In Prince George’s County, Maryland, I belonged to a great organization called the Prince George’s (County) Senior Provider Network. They have many members that offer a wide variety of services for seniors needing special assistance.  Their “Provider Directory” lists resources for the caregiver.

I urge you to research caregiver resources in your own area for help and educational resources:

How to look online for your state, county, and/or city caregiver resources:

For instance, go to Google’s homepage.  In the search bar, type in:

“(type the name of your town or state) caregiver resources”

-OR-

“(type the name of your town or state) family caregiver resources”

Be Realistic, and Plan as Much as Possible

It’s not “if”, but “when” you take on the role of caregiver.

Like most other things in life, you will be affected by “unintentional caregiving” physically, socially, emotionally, financially, and even spiritually.

But keep in mind: you are not alone!  There are many helpful organizations and tools available to you so that you, your family, and your loved one can continue to live a balanced and abundant life.

Additional Reading:

“Taking Care of Yourself: Tips for Caregivers”. National Institute on Aging.

“Caregiver stress: Tips for taking care of yourself”. Mayo Clinic Staff.

“Financial Advice for the Sandwich Generation” by John Pilkington. Today’s Caregiver. April 7, 2020.

Eldercare for Dummies. by Rachelle Zukerman.

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself. by Linda Abbit.

AARP Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family. by Barry J. Jacobs and Julia L. Mayer.

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