As a Program Director for the Alzheimer’s Association, I’m most often confronted with families facing Alzheimer’s disease in its middle stages when there is a moderate change in a loved one’s abilities and questions arise regarding how to manage care. As we at the Alzheimer’s Association strive to reach families earlier in their diagnosis to educate them on early intervention and best practices, I have had the privilege of getting to know some pretty heroic people. One such person is Sarah.
I met *Sarah, a mother of six and grandmother of many, one afternoon at our office. She is in her early 70’s and is in the early stages of Alzheimer’s disease. Sarah’s contact with us began when her daughter reached out for information on our 24-hour helpline. A one-on-one care consultation revealed that Sarah’s children were doing everything they could to take care of their mother who, at this point, scarcely needed help with her day to day activities. I offered for Sarah to join us for an educational program for persons who are still in the early stages of dementia. She happily obliged.
I see in Sarah’s children what I see in many families…the tendency to care too much (if there is such a thing). Sometimes when a person is initially diagnosed with dementia, families can feel very protective and proactive – both of which are generally good qualities! The problem arises when families don’t allow the diagnosed person to do the things that they can still do. Allowing people to continue using their skills not only helps them retain those skills for longer, but it also provides the sense of purpose and fulfillment that all humans seek. I see this very thing first-hand in my own home. I admit, I have been guilty of “over-doing” with my children from time to time. They will allow me to cook and clean and tidy up after them but I have found that when I give them chores and encourage them to be part of the household function, they gain a sense of worth, purpose and belonging in the family unit. Nothing beats the look of pride on my little girl’s face when the potatoes she mashed were raved about at dinner; or to see my little boy beaming that he mopped the floor (ok, it was with a Swiffer, but the floor did shine) by himself. All of this shows me that by choosing to delegate skill-appropriate chores to them, I’ve helped them feel their importance to me and their place in the household. And so it is with us adults as well!
My dear friend, Sarah, has begun to reclaim her title as “Queen of her Castle” as she now speaks up when her adoring children try to do too much for her. No more being waited on, she is taking charge of her life once again. Sarah has also decided to become a volunteer for the Alzheimer’s Association and share her many gifts and talents with us. Though there are some areas where she struggles, Sarah has accepted her limitations and does as much as she can in other areas of her life. She has reclaimed her throne, so to speak, and is very proud of herself for doing so. And I am so proud of her too!
I have heard it said “Alzheimer’s is a journey, not a destination”. Sarah has taken the reigns of her journey and is finding that navigating the disease is far more manageable than she first thought. She has attended the Living With Alzheimer’s Disease Educational Series for Persons Diagnosed and has found her life balance again. The once quiet and reserved woman who came to us with fear in her eyes is standing tall and making plans for the life she wants and deserves. She is very aware of where her journey may take her and she is empowered to make decisions now so that her children will know how to manage her care later.
Sarah, you are my hero! For those of you who have not yet found your footing after your own diagnosis, I encourage you to reach out to your local Alzheimer’s Chapter; get educated and get empowered. And I bet you will suddenly find that you have become someone’s hero too!
– Theresa Bayman, Program Director for the Coastal Region of the Alzheimer’s Association, Georgia Chapter
*Names and details have been changed to protect the identities of the families and individuals that we serve.