Create a Personal Plan for Caregiving

Caregiving can be a deeply meaningful experience. It also can cause stress, requiring a great amount of your time and energy, including medical duties you never prepared for.   

After my husband was diagnosed with ALS, I wrestled with an array of questions and concerns: what sort of care he would need in the future, where to find services and other support, what modifications we needed to make in the house, and how I should help him while also keeping up with my job at AARP.

Over time, I figured out answers that made sense for our family. But looking back, I believe it could have helped to have a caregiving plan at the start of my journey. AARP will continue to push Congress and state legislatures to enhance support for family caregivers in a whole range of areas. But we also want people to be aware of steps they can take to empower themselves.

Whatever your circumstances, here are some of the building blocks that can potentially go into a caregiving plan for you: 

Start the conversation. When you see the need for care developing, find ways to talk with your loved one about the situation and the choices you both may face.

Do your homework. Identify local resources and services that may provide help. This knowledge is not only practical; it can build your confidence and sense of control. 

Form your team. Choose the people you can turn to for various tasks. This may include paid aides as well as social workers, nurses and other health care professionals. Are there friends or relatives you can count on?

Establish the plan. Assess your own role (and hours of availability) and consult with team members to create an arrangement that will ensure your loved one gets all the care they require.

Finally, care for yourself. Family caregivers can neglect their own health needs and risk burning out under the pressure. Be aware that caregiving can cause significant risks to your own health. Don’t let that happen. 

Your caregiving experience can start with a conversation. Pick a moment to talk with your loved one about the realities you both are facing. Care needs, financial realities, and your own ability to provide care are all on the table. Encourage your loved one to clarify their wishes, and express your desire to respect them.