The challenges of being a sandwich generation caregiver, typically defined as a midlife adult who supports their children and an aging parent at the same time, are well documented. They include financial stress, burnout, and feelings of isolation.
But when your responsibilities also include a brother or sister with a disability, making you a “club sandwich” sibling, the demands on your time, energy, and income are greater still. Planning and preparation are essential to ensure that you don't become overwhelmed.
“I am one of those caregivers, as my dad had Parkinson’s disease before passing in 2016 while I was pregnant with my second daughter, who was born with a rare disease,” said Mary McDirmid, a special-needs financial professional with the Special Abilities Network in Spokane, Washington. “Being a sandwich generation caregiver starts to wear you down if you don’t have boundaries around taking care of yourself.”
If you help support a sibling with special needs or are likely to inherit the responsibility while caring for other family members, you may want to consider the following six points:
- Ask questions and get involved.
- Be clear about your willingness to act as caregiver.
- Get organized.
- Get your financial house in order.
- Maximize public benefits.
- Take time for self-care.
Here’s a closer look at each of those points.
Ask questions and get involved
Most siblings with a brother or sister with special needs have been involved in their care all along, helping their parents out as needed, said Cody Sutton with Stonewater Financial Group in Dallas, Texas, who caters to clients with a special-needs loved one. But that does not necessarily prepare them to take over as caregiver.
As you mature into adulthood — and well before your parents start to decline — it’s a good idea to start taking a more hands-on role by attending therapy sessions and medical appointments with your sibling, said Sutton, whose brother has an intellectual and developmental disability. Doing so gives you the opportunity to ask your parents questions about your sibling’s care.
Sutton also recommends meeting with your family’s financial professional, who may have helped your parents create a special-needs trust. A special-needs trust is an irrevocable trust that allows a beneficiary with a special need to inherit assets without jeopardizing their access to public benefits. The trust should include your parent’s “letter of intent,” which details your sibling’s likes and dislikes, routines, and functional abilities.
An introductory meeting with the financial professional who understands your family’s holistic needs can put your mind at ease as a future caregiver. He or she can also advise on whether protection products, such as life insurance, disability income insurance, and long-term care insurance coverage for yourself or your parents, might potentially help to transfer financial risk.
“Financial planning for people with a special-needs loved one is unique,” said Sutton, noting that he instructs all his clients with a special-needs child to share his contact information with their other children, which allows for a seamless transition of care. “We don’t just plug in the numbers and say, ‘Here’s what you need to save.’ We go deeper and ask questions like whether or not you will be able to maintain a full-time job when you step into the role of guardian."
Be clear about your willingness to act as caregiver
Getting involved while your parents are still your sibling’s primary caregiver will also give you a better sense of whether the responsibility of caregiving is something you will be willing to take on.
Kelly Piacenti, head of SpecialCare at MassMutual and the mother of four, including a son with special needs for 19 years, said it’s important to be honest with your parents about whether or not you have the emotional and/or financial bandwidth to support your sibling. Perhaps your job requires significant travel, you live out of state, or your spouse is unwilling. Open communication gives everyone time to plan.
There are plenty of ways to remain in your sibling’s life beyond providing direct care — by visiting them regularly at a group home, by managing the public benefits and health care they receive, or by becoming the future trustee for their special-needs trust. Note that the Special Needs Alliance suggests siblings may not be the ideal choice for a trustee.
“I’m not involved in my brother’s day-to-day care, but I am involved with a nonprofit advocacy group making sure that new laws that benefit him get passed right way,” said Sutton, noting that those with a sibling with a disability must learn how to file benefits paperwork and advocate for their brother or sister so they continue to receive the full benefits to which they are entitled. “Those benefits should never stop just because your mom and dad are gone.”
Don’t forget to coordinate with any other siblings you have without a disability, too. It may be possible to share the responsibility of caregiving, with one handling the financial affairs and the other managing medical appointments. Many hands make light work, which is a necessity for club sandwich caregivers.
There are only so many hours in the day — and never enough when you’re juggling the responsibilities of caring for your children, parents, and sibling with a disability. You can’t afford to waste time repeating phone calls, hunting down documents, or rearranging appointments because your calendar is double booked.
Organization is a must. To help you maximize efficiency and potentially even free up a few minutes each day for yourself, consider:
- Creating a filing system for paperwork (medical records, benefits forms, Social Security statements, tax documents, special-needs trust, etc.) that works best for you.
- Keeping a list of Social Security numbers and online passwords handy, but secure.
- Making sure medical care proxies and living wills for all family members of legal age are completed and in place. Otherwise, medical privacy laws will deny you access to your family member’s patient information and prevent you from making decisions regarding their care.
- Maintaining current contact information for doctors, suppliers, schools, etc. in an easily accessible location.
- Keeping a written record of correspondence with health care providers and public benefits administrators, so you don’t have to reinvent the wheel with every call.
Get your financial house in order
Working with a financial professional and staying organized will help you get your financial house in order, too, so your caregiving responsibilities never compromise your family’s financial security.
Caregivers who are busy raising their own children, working full time, helping their aging parent, and tending to the needs of a sibling with special needs often make their own financial security a low priority. That’s a mistake that creates more stress in the long run.
Financial professionals say you need to make sure you are saving for:
- An emergency fund.
- Your retirement.
- College for your kids (if you plan to help them pay).
- The purchase of a home that may potentially help you build wealth.
Caregivers should also review their life insurance and disability income insurance coverage to protect themselves and their family from financial risk. Essentially, do the things for yourself that you’re trying to secure for everyone else. (Calculator: How much should I save for retirement?)
Maximize public benefits
One of your primary duties as a caregiver is to ensure that your loved ones are maximizing all available resources.
For starters, take a look at what the Social Security Administration (SSA) has to offer. The Benefits Eligibility Screening Tool may be useful, along with information about disability benefits, which may apply to your parents and your sibling with a special need.
Public assistance benefits for your sibling with special needs include:
- Supplemental Security Income (SSI), a non-medical federal program that pays benefits to eligible dependents with special needs to help with basic food and shelter needs. Eligibility is based on the parent's or caregiver’s income while the dependent is a minor. Once your sibling with a disability reaches the age of majority, however, eligibility will be based on their income, not their caregiver’s. Information is available online, by telephone, by mail, or in person at an SSI office. The toll-free number is 1-800-772-1213.
- Medicaid, a state-administered, but federally reimbursed program that pays for needed medical care for eligible persons. Because Medicaid is a joint program between federal and state, rules and regulations may vary by state. Eligibility for individuals with special needs is generally determined using the income methodologies of the SSI program. Under a Medicaid waiver, a state can waive certain Medicaid program requirements, allowing the state to provide care for people who might not otherwise be eligible under Medicaid. State Medicaid waivers can help provide long-term services and support to eligible dependents with special needs who need assistance with activities of daily living, such as eating, dressing, bathing, etc. Programs vary by state. For more information, contact your local Medicaid office or visit the Centers for Medicare and Medicaid Services website.
Social Security benefits for your parents (and potentially your sibling) include:
Retirement benefits that replace a percentage of their pre-retirement income based on their lifetime earnings. The portion of their pre-retirement wages that Social Security replaces is based on their highest 35 years of earnings and varies depending on how much they earn and when they choose to start benefits. If your parents aren't already collecting Social Security retirement benefits, talk with them — and with a tax professional — to determine the best age to begin those benefits. (Learn more: When should I apply for Social Security benefits?)
- Family Benefits (Spousal and Children), which may be available when disability and retirement benefits kick in. Certain members of your family may qualify for benefits based on work history (spouse, divorced spouse, children, and adult children disabled before age 22). More information is available here.
- Children’s Disability Benefit, a federal program that pays benefits to eligible adults who have a disability that began before age 22. Such an adult may be eligible if their parent is deceased or starts receiving retirement or disability benefits. It is considered a "child's" benefit because it is paid on a parent's Social Security earnings record. More information is here.
- Survivor Benefits are paid to widows, widowers, and dependents of eligible workers. This benefit is particularly important for young families with children or individuals with special needs. More information is available here.
- Social Security Disability Income is a federal program that pays benefits to you and certain family members if you are “insured,” meaning that you worked long enough — and recently enough — and paid Social Security taxes on your earnings. More information can be found here.
A financial professional who is trained to work with families with a special-needs loved one can help educate you about waiver programs and other Social Security benefits. They can also help ensure that any assets left to your sibling from your parents or other relatives are done so through trusts and other vehicles that do not jeopardize eligibility for public benefits. (Learn more from MassMutual SpecialCare)
Beyond government benefits, community groups, private foundations, medical insurers, and special education outlets provide aid to those who are eligible. Consult city, county, state, and federal agencies for help with financial aid options for your dependents.
Take time for self-care
Lastly — and this is easier said than done — take time for yourself.
“When you’re overwhelmed by caregiving responsibilities, it can be difficult to take the time to research respite programs in your community,” said Piacenti. “But it can make all the difference to your physical and emotional health. If you get sick, what good are you to everyone else?”
Take advantage of local respite programs, many of which are free, in which volunteers come to your home to give you a break, go to the grocery store, or just get out of the house. “We all want to say ‘take time to breathe,’ but we all know that doesn’t always happen. These families struggle trying to find even 15 minutes for themselves,” said Piacenti. “With my own son, I never really had a day off. But you need to find a few minutes every day to think about something else. Even if you just go into a room and listen to music.”
That’s good advice, said McDirmid, a former runner who said she now makes time every day for a walk, a bike ride, or a swim where no one can reach her.
“The body keeps score,” she said. “If you continue with that mental load and trauma, if you let that sit, you’re going to get into trouble.”
Keep yourself mentally and physically healthy by eating well, getting exercise, maximizing quality time with your family, and engaging in social interaction when possible. Therapists and sibling support groups can also be an important resource, said McDirmid.
If you are living in the club sandwich generation and supporting your spouse and children, your parents, and a sibling with special needs, know that there are resources to help you and your family plan for the future.
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