Being Her Brother’s Caregiver

Helen Ries and Paul Knoll

A year ago, Helen Ries’s mother died unexpectedly, and she became the primary caregiver of her brother, Paul Knoll. Knoll has Down syndrome and had lived with his parents most of his life. Ries admits that her first year as a caregiver wasn’t easy, as she attempted to maintain the same standards for her brother as her parents did.

Helen’s parents were there for her brother all day, every day. They washed his clothes, made his meals, and chauffeured him around. They made decisions for him and solved problems for him, without him ever having to ask for help. These were tough demands to follow for Helen, who had a family and a job of her own.

At first, changing her life to be in service to her brother made Helen deeply angry, and she could tell her brother was also feeling resentful, since she was his older sister, rather than his parent. They fought constantly, until one day, she decided to just “let go.” She began encouraging her brother to make his own decisions, rather than enabling him, and he began learning from unexpected and undesirable consequences. For instance, if on occasion, his socks were dirty, his hair was a mess, he couldn’t wake up in the morning, or if he ate popcorn for dinner once in a while, Helen said, “so be it.” When Helen let go and let him manage his life a bit more for himself, he gained a sense of self-confidence and independence, and Helen’s role became a lot more enjoyable, and less stressful.

Similar to Helen, many of us are caregivers for our loved ones. And, as Helen found, there are ways to simplify the role and to reduce stress. Below are some tips from successful caregivers, such as Helen:

• Accept your role: Research shows that caregivers who feel more in control and accepting of their roles are more likely to realize positive benefits from caregiving.
• Practice self-care: Whether it’s exercising daily, meditating, getting enough sleep, or carving out some “me” time every week, successful caregivers know to put their needs first. They know it’s what gives them the strength to care for others.
• Prioritize your own life: Successful caregivers do their best to maintain their careers and their relationships, knowing that caregiving is not forever. They know they can put themselves first and still be an attentive, responsible caregiver.
• Set boundaries: Successful caregivers know their limits and say no to requests that push them.
• Tune out critics: There are always plenty of people willing to tell you what you are doing wrong and what you could do better. Successful caregivers are confident in themselves and tune out the critics. They try not to internalize negative feedback.
• Focus on the big picture: Successful caregivers have bad days and get overwhelmed just like everyone else. They work through those moments by keeping the big picture in mind. Remember that although they may seem challenging, your caregiving experiences allow you to truly connect with someone in a way some people never do, and to be of service to someone you care about in a time of need.

Helen Ries in our example suggests that caregivers should “set up a caregiving circle and use existing tools, such as http://tyze.com/ to do so.” Tyze was originally created for families with a person with a disability, but it’s now being used to facilitate all kinds of caring circles. “Using it (and setting up a caregiver circle) could save caregivers a lot of effort.” Ries also recommends that “It’s important to have good professionals in your life, such as a good lawyer, giving you sound advice – who is willing to go beyond to find solutions.” Read more about Helen’s first year of being a caregiver for her brother and see her suggestions on her blog.

Are You a Caregiver for a Loved One with a Disability?

If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal, caregiving, and everyday needs can be challenging. The Center for Disease Control (CDC) offers a helpful resource, titled, “Caregiving Tips for Families of People with Disabilities.”  These tips provide families with information on how to stay healthy and positive, and can be used to address issues such as being informed, getting support, being an advocate for your loved one, empowering your loved one, and finding balance in your own life.

The following links may also be helpful:

• The Arc advocates for all people with intellectual and developmental disabilities (I/DD) and their families. Whether you’re concerned about the future for your child about to be born with a disability or you have a child with I/DD who is growing into a young adult, your local Arc chapter can help.

• Parent to Parent USA (P2P USA) pairs parents of children with disabilities or complex health conditions with experienced parent mentors who can provide emotional support and help finding information and resources. Contact a P2P program near you.

• There is a network of University Centers on Disabilities around the country that provides training and guidance on all sorts of issues that affect the lives of people with disabilities and their families, including health, education, employment and social services. One of these centers published a helpful guide, “Future Care Planning: A Roadmap for Family Caregivers.”  Page 66 of the guide includes a section of resources for caregivers of adults and children with developmental disabilities.

• Respite care can take place in your own home, where professional caregivers provide an opportunity for parents to have some time to themselves to shop, go to a medical appointment or spend time with other children or a spouse.

• State Councils on Developmental Disabilities advocate for people with developmental disabilities to promote inclusion, acceptance and self-direction.
• The National Down Syndrome Society has more than 375 local affiliates around the country. They provide a variety of services and many have a parent support program. Other services may include new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines and regional conferences.

• Local chapters of Autism Speaks provide many different services for families with a child with autism. They also have a resource guide for each state that lists employment, transportation and health services, support groups, speech and language therapies, after-school programs and many other services available in your state.

Special Needs Planning

When you are the primary caregiver for a loved one with special needs, it is vitally important to take the right steps to ensure that your loved one will be financially secure and cared for in the event of your death or disability, including:

• Hiring an attorney who is experienced in creating special needs trusts, such as myself;
• Clearly spelling out your wishes for the disbursement of trust funds within the trust document;
• Finding someone you can trust that has your loved one’s best interests at heart to serve as Trustee or Trust Advisor.

Special Needs Trusts

A special needs trust is an essential tool to protect a disabled individual’s financial future. Also known as Supplemental Needs Trusts, this type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the disabled person’s name while still allowing those assets to be used to benefit the person with special needs. Read more here.

When it comes to special needs planning, the Farr Law Firm can guide you through this process. If you have a loved one with special needs, call us to make an appointment for a no-cost initial consultation:

Fairfax Special Needs Planning: 703-691-1888
Fredericksburg Special Needs Planning: 540-479-1435
Rockville Special Needs Planning: 301-519-8041
DC Special Needs Planning: 202-587-2797