Eight years ago, Dorothea Macedo began to notice little changes in her husband’s behaviors. She would ask him to go get the mail and he would come back with the neighbor’s mail, or they would be driving around their neighborhood and he would get lost. After a few more similar events, Dorothea took her husband, Tony, to the doctor where he was diagnosed with dementia.
For the first four years of Tony’s diagnosis, Dorothea tried to care for him by herself because she was committed to keeping him at home for as long as possible. She read the books Tony’s doctor gave her about caring for someone with Alzheimer’s, and she did her best to take care of him without help. But as his health declined, Tony got more frustrated and uncooperative. It wasn’t long before Dorothea met her breaking point and finally passed out due to the everyday stress of caring for Tony around the clock. She ended up in the hospital where she finally realized she needed to reach out and ask for help.
Often, when we think about Alzheimer’s disease, we worry about our chances of falling victim to it, or our chances of becoming chronically ill. But not too often do we think what we would do if our spouse or parent were to become chronically ill or suffer dementia and require around-the-clock care. To be a caregiver for a chronically ill parent, spouse, or friend becomes a full time job, and often, the person being cared for receives a lot of attention, while the caregiver’s needs are unintentionally pushed aside.
After Dorothea came home from the hospital, she looked for support. Her sister-in-law told her about an ad in the paper for a support group where individuals caring for people with dementia meet to share their experiences. (The support group, run by Community Nurse & Hospice Care, meets at the Fairhaven Council on Aging the first Wednesday of each month from 1-2:00pm. For more information, you can contact Patricia Midurski at 508-996-0368.)
Joining this group was extremely helpful and therapeutic for Dorothea. She realized that she isn’t alone, and that many people are dealing with the same issues. She says she looks forward to the group meeting, “we laugh, vent, cry and share and when I leave I feel my stress is lowered,” Dorothea wrote in a personal essay she shared with the group a couple years ago.
Now, four years later, Dorothea is a veteran member of the support group; she is a wealth of knowledge and experience, helping direct newcomers to a variety of community resources. She says caregivers must be advocates for themselves and their loved ones. At the support group she learned about Coastline and our Family Caregiver Support Program which provides guidance and assistance to hundreds of caregivers throughout New Bedford and its surrounding towns.
She has since become a client of the program, and receives help paying for transportation to get Tony to and from medical appointments; she also receives a small grant to help pay for incontinence items, and she relies on Coastline for continued guidance and support.
These days, Dorothea and Tony enjoy a simple but consistent routine. Dorothea wakes up and helps Tony get out of bed. A Home Health Aide comes in the morning to help wash Tony and get him ready for breakfast. After breakfast she puts Tony in his recliner and plays music for him so he can doze while she gets things done around the house. In the afternoon they watch his favorite shows together (Little House on the Praire and The Waltons). And they still have conversations here and there, even though they don’t make too much sense.
Although Tony isn’t the same Tony she married, Dorothea says she still enjoys every moment she has with him, that she still loves him – although sometimes she doesn’t like him. But, she says, she is not a saint, only human – a feeling that is surely common among caregivers across the country.
This coming spring, the Alzheimer’s Association, in partnership with Coastline, will be giving an educational presentation about caring for a loved one with Alzheimer’s Disease. Keep your eye on the website for the official date, time, and place.
For more information about Coastline’s Family Caregiver Support Program, please contact the Program Coordinator, Libby Costa, at 508-999-6400 ext. 171. You can also donate to the Caregiver Program through our homepage to help us support caregivers like Dorothea.
