Receiving a dementia diagnosis can be frightening. There are so many unanswered questions. Who do you turn to with questions? What happens as the disease progresses and the needs of your loved one increase? How do you stay current? Who do you turn to when you need help?
It’s not unusual for care partners to be the first people to seek out information after a loved one receives a diagnosis. Knowing what to expect and where to go to get questions answered can be empowering for family caregivers, and help them cope with the burdens associated with caregiving. It also leads to increased feelings of commitment with your partner, and a resolve to get through the disease together.
What can you expect after receiving the diagnosis? Sadness. Expect to feel sad as you adjust to the new reality that is your diagnosis. Confusion and despair are also normal. Try to focus on the things that will remain the same: Your status and identity-builders- your role as a father/mother, partner, daughter. That won’t change. Talk about your feelings with someone that you trust and who can empathize with you. Where possible, try to be open with family and friends, and let them help you in this journey. They will have their own feelings to process, and that is all normal too.
Try to keep involved in activities that bring meaning and purpose to your life, and encourage your loved one, living with dementia to stay involved in those activities that bring meaning and purpose to his or her life too. Talk about other activities that they may enjoy, and that you may enjoy together. Learning new things can be stimulating for the brain, and therapeutic to undertake new activities together.
Learn the resources that are trustworthy, and that answer your questions. Organizations dedicated to caregivers, and that specialize in the disease, like the Alzheimer’s Society, can offer a variety of helpful resources for caregivers. Consider using Tusk, the Care Navigation Tool, to help you on your journey.
Comment below to let us know what resources and organizations were most helpful to you as a new caregiver. We want to know what helped ease your burden when you were dealing with the dementia diagnosis.