More Than Memories
Written by: Michele Sands
When my husband and I walked into the first Memory Café sponsored by Jewish Family Services of Delaware I immediately felt myself relax.
Calming strains of Hawaiian music surrounded us as we found a place at the table with other individuals experiencing memory changes and their care partners. The program about Hawaii, led by JFS Social Work intern and Hawaii native, Keriann Bennett, gave us the opportunity to share experiences and learn fun facts about one another and Hawaii in an accepting and welcoming environment. By the end of the afternoon, I felt like I could just as easily have been on the beach with friends.
A diagnosis of Alzheimer’s Disease or any loss of memory can be the beginning of a lonely journey for the person with the diagnosis and the individual(s) responsible for his/her care. While the physician who makes the diagnosis (usually a neurologist) may confirm that the patient is experiencing more than typical “senior moments” and will often prescribe a medication to temporarily slow the progression of the disease, doctors may not offer information about the resources available to cope with the changes that will occur. Instead, the care partner and other family members are left to explore the options on their own. This was our experience after my husband Howard’s diagnosis.
I first noticed signs that Howard had gaps in his memory and some confusion late in 2012. I gave examples of these episodes to his primary care physician and asked for a referral to a neurologist. After a few visits, Howard was diagnosed with mild cognitive impairment, which we were told does not always develop into Alzheimer’s. Recognizing the importance of early intervention, I reached out to the Alzheimer’s Association’s Delaware Valley Chapter in April of 2014 and received information about educational programs, support groups, a 24/7 helpline, and other resources. Equipped with more knowledge, I felt slightly more at ease, but by October 2014, Howard’s diagnosis had changed to Alzheimer’s Disease and I was determined to find additional resources and a network of support.
Although the Delaware Valley Chapter has an office in New Castle County, it did not offer a sufficient number of programs locally to meet our needs at the time. However, we were able to attend an eight-week information program in Media, PA for those with early stage Alzheimer’s, which later evolved into a monthly support group for those with the diagnosis and the care partners; care partners continued to meet monthly to share updates and offer support to one another after the official group concluded in 2017. I also attend a support group at the Osher Lifelong Learning Institute that I have found to be very valuable, especially since it is led by a licensed social worker who has been a care partner herself. Each of these groups and resources were helpful in their own way.
Navigating the care system doesn’t have to be difficult because there are so many resources, but it helps to become part of a support system. I became familiar with the Memory Café concept a few years ago and felt it was important to have the program available in our own community. A Memory Café is a meeting place for individuals living with changes in their thinking or memory, mild cognitive impairment, or dementia due to Alzheimer’s Disease or a related disorder. It’s a place to relax, have fun, and meet others who understand and connect with your experiences; it’s an inclusive space and a diagnosis of dementia is not required to attend. Memory Cafés are also a place for care partners to enjoy a change of scenery and routine, meet other care partners, exchange ideas and learn about resources, and experience respite and renewal in their relationship with the person in their life who has dementia.
I suggested this unique program idea to Jewish Family Services last summer and I am grateful to Karen Commeret, JFS’ Director of Care Management, for making this a reality for me, for Howard, and for other individuals experiencing memory changes and their caregivers.
It is my hope that this important program will reach all those in our community who need a place to unwind and connect with others who understand the challenges associated with dementia. Building a network of support is essential and I’m pleased to be part of creating this new opportunity in Delaware.