The National Alliance for Caregiving recently released a report, Burning the Candle at Both Ends: Sandwich Generation Caregiving in the U.S., that brings to light the challenges faced by the Sandwich Generation. These are unpaid caregivers of an adult who are also caring for children living at home. It is estimated that 28% of all caregivers are in this situation. 31% of those family caregivers are millennials. 10,000 baby boomers a day are headed toward retirement. The numbers are staggering.
A recent NYT article, For Millennials Making Their Way, A Detour: To Caregiving, focuses on the challenges of starting a career and family while caring for an aging parent. The term panini generation has been coined to describe the pressed feelings these young adults in their 20’s and 30’s are experiencing.
There are few support systems in place for the unpaid family caregiver. Employers are unprepared to meet their needs. The financial, emotional and physical burdens are overwhelming. The responsibility often falls to one family member.
Lori cares for her mom, mother-in-law and grandmother
I spoke with Lori, who is a millennial involved with care for her mom, mother-in-law and grandmother. She actively spends 10 hours a week on caregiving tasks, but realizes the experience will intensify and expects that the number will increase. Lori takes her grandmother to chemo treatments, coordinates her medicine management and family communication. She recently went on several overnight trips to a teaching hospital where her mom received care. Her greatest worry at the moment, however, is her mother-in-law who has demonstrated a significant change in memory abilities and is resisting assistance.
Lori recognizes that concern for her mother-in-law’s safety is perceived as a threat to independence and is grappling with how to have a respectful, productive conversation. Lori has already experienced the reprioritizing that goes hand in hand with caregiving. She has given up several of her hobbies in order to be 100% present for those who depend on her. She and her husband plan to start a family and Lori is aware that the added responsibility of caregiving for adult family members will pose a challenge.
In order for the caregiving experience to be sustainable through the duration, the family caregiver must create their own support system. Three integral parts of that support system include:
- A foundation built on knowledge and information
- Help – for you, your caree and your family
- Self-care redefined
Create a sustainable caregiving foundation
Creating a sustainable foundation begins with conversation. Conversations with your future caree will ensure that what you are doing still meets their needs throughout the journey. These conversations can lead to developing the important relationships with their doctors, attorney and financial planner.
- What are your caree’s wishes?
- Will their financial situation support their wishes?
- Who are their doctors?
- Who will they designate to help with health care decisions?
- Which family members may participate in providing care?
Lori and her husband, Sam, are in the early stages of having these conversations with Scott’s mom. AARP created a wonderful planning guide for families, Prepare to Care. This guide not only offers advice for having important conversations, but outlines the next steps to develop a care team and a plan. This will be a great resource for them as they continue on their journey.
Find and receive help
As you begin to do more and more for your caree, it is natural to start giving up time for yourself. Before you feel the need:
- Find home care services that will help with housekeeping, errands, grocery shopping, meal prep
- Become an investigator
- Develop your care team
- Do the research and try and see what works
- What community services are available?
- What are the differences between local home care agencies?
- How do you choose one?
- What do you need to know about a medical diagnosis?
Lori has begun to reprioritize and give up parts of her life that add meaning and value. This is the tendency and is a trap. The goal is to find help and lighten the caregiving load so that you can keep your life.
Experiment
Knowledge is power. Arm yourself and start to experiment. Experimenting is a powerful skill to master. Begin to figure out how you can save as much time as possible for yourself. You have permission to try and fail. Know it is okay to try and that there is the possibility that it won’t work. You are going to learn as much from the failure of trying as from something that works.
Begin the search for support that comforts. You may not feel like you need support. This is the perfect time to find it. When you need it, you will be too stressed to do the research. Support may come from a community or online support group, a place of worship or a therapist. Friends may not offer the best support. If they don’t “get it”, they won’t respond in a way that feels supportive. That is not to say don’t spend time with friends, but that may not be where you find the best support.
Redefine self-care
Instinct is to lighten our load by giving up our activities and our care needs. When you find and receive help, you lighten your caregiving load. This is important because, when you are suddenly dropped into an intense caregiving experience or have arrived without preparation, you are simply trying to survive. Sustainability starts with keeping a life and meeting your basic well-being needs such as eating well, getting enough sleep and scheduling and going to wellness visits.
Beyond the basics you can get more creative, redefine what self care looks like for you and your situation and move from survive to thrive. Self care looks different when in the midst of a caregiving experience. It may take some inner exploration to identify what sustains you, what rejuvenates and revives your spirit.
- What are your musts haves? A yoga class? Lunch with friends?
- What do you consider guilty pleasures?
- What if you removed the guilt?
- What are your passions?
- How can you work your restorative self care interests into your daily activities?
- Here are a few ideas
Lori and Sam have started on their caregiving journey and it will no doubt be an adventure. They are asking the right questions and are beginning to plan. Lori and Sam are ahead of the curve. As the national crisis continues to draw attention, we anticipate the development of programs that will support their efforts and allow them to not just survive, but thrive in their roles as family caregivers.
Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.