When Kara’s mom was diagnosed with dementia, she turned to COMPASS for support

My mom was diagnosed with dementia in her early 60’s. She got diagnosed several different times in different ways. That was very confusing and very stressful because we didn’t really know what she was facing. And we finally came to JFS and were given a true diagnosis of frontal lobal dementia. She passed away a little over a year ago from cardiovascular issues along with dementia.

We heard about JFS through a support group when we noticed major changes with my mom and needed more advanced healthcare for her dementia. And the support group had rave reviews of JFS. So, we said, “well, let’s check them out.”

It was like someone finally put light into a dark tunnel. Someone finally gave us exactly what we were looking for, which was an outline of what the disease looks like, what we would be facing potentially, and an actual path for us to be able to move forward.

When you walk on this path, uncertainty is at every corner, both for the person going through it and loved ones involved. So being able to go to JFS and them giving us a path and guidance along the way, that was the biggest gamechanger.

Like everything else, when you enter the dementia world, it’s like you’re in a big fog. People with dementia become childlike, but they’re adults. Caring for someone with dementia is a lot like entering parenthood again. So having that guidance and support and being able talk to someone about what you’re doing right and what you could be doing differently is huge. Love is not the question. It is patience, and kindness, and respect, and calmness, and tolerance. It’s all those things. You have to dig very deep.

Love is not the problem. It is finding the support to be able to do this every day, day in and day out.

Ironically, the last six months of my mom’s life were very healing in some ways. Being able to come into JFS and cry, and vent, and being able to hold someone’s hand was the best gift we could have been given for the last several months of her life.

My mom was a teacher extraordinaire. She couldn’t turn it off, she would teach everybody. And she loved bugs. I wasn’t allowed to be afraid of bugs growing up and I teach my children the same.

Butterflies and dragonflies were especially important to her, she would always point them out to me when she saw them. So now I wear a butterfly necklace in her honor. I also have a butterfly garden. And whenever I see a butterfly, I think of my mom. She was a delight.

Unfortunately, so many pieces of her were stolen from her by this disease. But one of the things that remained until the very end was her desire to love and to teach. And the staff at JFS delighted in her when she would come in, which was huge because dementia is not something you understand until you walk through it.

There is no cure for dementia. There is no major medical inference at the very end. There’s not much medically you can do. That’s why the other support is so important. Because you know this is what I can do for the best care for my mom. My mom was a phenomenal mom. She took care of us, and all we wanted to do was take care of her.

Anybody that I come across in this area I one thousand percent recommend your services. I’ve said, and I will continue to say it, you were a lifesaver for our family.

The JFS COMPASS program provides specialized medical care for older adults with dementia and—just as importantly—critical support for their caregivers including education, counseling, and improved access to services. Click here for more information.