Brenda Avadian is an experienced family caregiver and author of nine books, including “Finding the JOY in Alzheimer’s: Caregivers Share the JOYFUL Times,” and an award-winning speaker. She is the founder of The Caregiver’s Voice, a website devoted to helping caregivers for people with dementia gain knowledge and strength with humor.
Here she shares a few caregiving tips:
HISC: You and your husband were caregivers to your father after he was diagnosed with dementia. Journalist and author Gail Sheehy was a caregiver to her husband during his long struggle against cancer and she too has written about that experience. In her book, “Passages into Caregiving: Turning Chaos into Confidence,” Ms. Sheehy has a list of the stages of caregiving. The first stage is “shock and mobilization.” What advice do you have for someone who has just become a family caregiver and might be in this stage?
TCV: When families wait for a crisis before stepping forward, that’s what usually occurs—SHOCK. Sheehy advises finding a doctor you can trust. For many of us, we’re still not sure what we’re dealing with. In shock, we’re frozen and struggle to act. Oftentimes, we hastily make decisions (mobilize) that may not be in our best interests or those of our loved one. During the last 20 years, I’ve learned it’s best to first learn as much as you can about a loved one’s health. Cancer? Dementia? Stroke? Learn what to expect by talking with professionals, fellow caregivers, and reading resource materials.
HISC: On your blog, you wrote about feeling overwhelmed in an article titled, “Caregiver, take it one step at a time.” Can you talk about a time when you learned this lesson as a caregiver?
TCV: It happened while I was writing a check at the grocery store. Exhausted from round-the-clock caregiving for my father, I couldn’t even recall the year! I mean forgetting today’s date is one thing, but the year? It was at this time and after several other dementia-like symptoms (disorientation and hallucinating) that my husband and I realized we were getting Alzheimer’s trying to keep up with my father’s care. It was then we realized we needed help.
We’re fortunate today in that caregivers have many resources along the continuum of care, such as in-home care, adult day care, and assisted living to give us respite so that we may recharge in order to function once more.
HISC: You have two books titled, “Finding the JOY in Alzheimer’s” and the obvious question is why is it important for family caregivers to find joy?
TCV: People have asked me, “Are you kidding?” and “How can you find JOY in Alzheimer’s?” My perspective is fairly simple in this regard: We have a choice. We can choose to be miserable and spiral into depression, and take those who love us down with us OR, we can find the goodness in our day and feel uplifted by what remains. How do you feel when you read both sides of that sentence? Does one half bring you hopelessness while the other invites hope? My goal as a caregiver has been to focus not on what my loved one and I have lost, but to direct my attention to what’s left. It’s a life philosophy that makes the best of any situation. As a result, caregivers from around the world have shared their uplifting stories while bringing smiles to loved ones as families choose to make the best of their situation.