No matter how capable you are as a caregiver, you can’t go it totally alone—you’ll need help and support from a variety of people to provide the care your loved one truly needs. Look for resources that help answer your questions, and research different support systems. In addition to becoming more knowledgeable about your loved one’s diagnosis, you’ll likely find yourself seeking wisdom and support from others in similar situations.
Several support communities are available, some local and others online. Some communities may be general, while others might be specific to location, type of disability, age, or other factors. You can find these groups through a variety of sources, including online searches, referrals from other caregivers, your local developmental disability board, and social workers.
Consider these national programs designed to help connect caregivers:
Establishing your care network
Understand that asking for help from others is OK. Caring for a loved one with disabilities often comes with added responsibilities above and beyond the normal demands of life. A few approaches can help ease those burdens and increase your effectiveness as a caregiver. First, recognizing it’s OK (and often necessary) to ask for and accept help is foundational to your well-being and ability to care for yourself and your family.
You’re not alone on this journey. Many specialized professional and community-based resources are available to support you as you navigate caring for your loved one.
Once you’ve decided to seek support and assistance from others, you’ll want to develop your strategy. Start by enlisting those who can help with coordinating services, including case managers, social workers, and medical care coordinators. Then consider these people and groups as you assemble your care network.
Community
- Family and friends
- Online and local caregiver groups
- Religious groups
Professional
- Health care providers
- Therapists (for example, physical or occupational, speech, and applied behavior analysis)
- Attorneys
- Benefit advocates
- Education team (for example, teachers and aides)
Services
- Governmental agencies
- Respite care
- Social and recreational groups
- Local nonprofits
- Vocational and day programs
Having constructive conversations with your care network
When caring for someone with disabilities, teamwork and good communication are vital to helping avoid unnecessary strain on your family and friends. When someone first learns of their dependent’s disability, they might experience any number of emotions, ranging from grief, denial, or sadness to relief or optimism. You may find yourself ready to develop a plan to move forward, or you might need some time to process this new reality.
Recognizing that you and others might have different responses to the same information will help foster healthy dialogues and provide opportunities to support others where they are. With that in mind, here are some tips to promote healthy conversations.
Educate yourself and others
Equipping yourself with accurate information about your loved one’s diagnosis will help you educate others.
Solicit input from others
Getting the perspective of others who support you or care for your loved one will usually promote better outcomes and help all feel valued.
Be clear about how they can help
Your loved ones likely want to support you but may not know how. Whether you need practical, emotional, or another type of help—they’ll appreciate you being specific.
Embrace your new normal
Recognize that caring for your loved one may change your family rhythm and the way you take part in activities that used to be routine. Being upfront and honest with those within your family and social circle can help promote understanding and avoid unnecessary conflict.
Think ahead to identify and engage members of your future support team
Although it can be tough to think about the future with so much to manage in the present, it’s important to think long-term and accept that you might not always be able to care for your loved one yourself. That means you’ll need to place the right people into the right roles to ensure your loved one continues to get the care they need.
After deciding which roles will likely make up your loved one’s support team, the next step is to identify who you want to fill those roles. Some important factors to consider include someone’s capacity, relationship with your family, age in relation to your loved one, and familiarity with financial and investment-related activities.
Next, you’ll want to have a conversation with those who you wish to fill those roles. Providing clear details of the role including its duration, responsibilities, and your wishes will allow that person to make an informed decision—ultimately helping ensure consistency in your loved one’s care throughout their lifetime. If they agree, you’ll want to ensure that you’re setting them up for success in their role by making your plan official (ideally with help from an attorney) and maintaining a current letter of intent.