When my Mom was battling Alzheimer's there was a moment when I realized that a person meeting for her for the first time would not be meeting the person that I knew and loved. The disease had simply taken too much.
It's heartbreaking for anyone caring for a loved one with Alzheimer's or dementia when the disease progresses to that point. As sad as it was to get to that place, I also realized that at some point it would have a profound impact on her care. Molly Gray was a delightfully, sometimes frustratingly, quirky person. So many little things could bother her, or make her happy. And Alzheimer's would amplify her reactions to them to the point where they weren't so "little" anymore. When we needed professional home care, and later memory care, our whole family worried about her comfort. We could could still understand her. We still "got" her. But how in the world could a stranger connect with her?
As it turned out our worries were not unfounded in many situations. Adult day care, home care, hospital stays and rehab centers were disasters.* We felt we couldn't leave Mom's side for a second, and we had to repeatedly educate the people caring for her about her personal preferences and sensitivities. It was frustrating for us, but mainly our hearts were breaking for Mom because she simply could not speak up for herself.
They say that "necessity is the mother of invention" but I think for The Memory Kit pain, frustration and compassion played the larger roles. Our goal in creating the Care Companion and Care Card was to make life more comfortable for people living with Alzheimer's/dementia, and to provide some peace of mind for their families. Both products are designed, with the help of experts, to enable your loved one's caregivers to get to know them and understand their needs when you're not there.
*Not every experience we had with care providers and healthcare professionals was bad. We made a change in Mom's primary care physician to a doctor who can accurately be called an angel, and the team at Sunrise in Beverly Hills was nothing short of amazing. They are a part of our family now.
A young man caring for his 73-year-old father with Alzheimer’s does not complain about the demands being a caregiver has placed on him, nor does he shy away from the toll his dad’s disease has taken on his own life. Instead, he is looking for positive ways to impact and support others in his situation: to help them be able to “go out to dinner, or on a date, or to a child’s wedding,” he says.
Vince Zangaro, who lives in the Atlanta area, last year launched the Alzheimer’s Music Fest to raise money to support others in his position. His father Albert, diagnosed at 62, was a former Eastern Airlines mechanic; his mother died at 55.
Last year’s concert raised more than $13,500 and another concert is planned for this weekend. Vince is optimistic that the nonprofit the concert helps fund, Caring Together in Hope will make a difference to those who have dedicated their care to a loved one.
Read his story and more about his life with his dad in this Atlanta Journal-Constitution article from Aug. 15.
And don’t miss the poignant You Tube video and Vince’s music, “A Better Man.” Many of you will recognize yourselves and the devotion and care you are lovingly giving, despite the difficulties and frustrations.
Care card Blog
If you have a loved one receiving long term care The Care Card can help ensure that their needs and preferences are always met.