On Independence and Alzheimer’s

I have always looked up to my “Gaga.” My mother’s mother moved to Florida from Vermont after meeting my grandfather at a company picnic she attended with her cousin while on vacation.  She bravely moved away from her large family and settled in St. Petersburg, Florida. She continued her career as a registered nurse and started a family with my Grandpa Barney. She had three boys followed by my mother, all within a span of 5 years AND while working full-time, nights. As a mother who now stays at home with 2 children under 4 years old, I cannot fathom having 4 children under 5 years old PLUS working full-time. She managed to run her household while  have a thriving career caring for others and supporting my Grandpa Barney’s business dreams, all while her family resided in another corner of the country and there was no Skype or free long-distance calls.

My Gaga spent her entire life caring for others. When she retired from nursing, she volunteered for Hospice, local assisted living facilities and the Historical Society. She spent summers in her hometown of Bristol, Vermont on a plat of land that has been in my family for 150 years. I would spend weeks at a time with her during summers while growing up and I cherished going to garage sales with her and hearing her historical society stories of her beloved Bristol. When I moved to Rhode Island for work 9 years ago, one of the things I cherished most was being able to drive up to see my Gaga on weekends during the summer. Gaga took pride in riding her lawnmower up and down her steep, half-mile long driveway. At 80 years old, she still mowed her own grass and volunteered to help others in need. Her independence is one of her greatest qualities.

A few years ago, my mom knew it was time for Gaga to start staying in Florida full-time. Signs of dementia were getting stronger and it wasn’t safe for her to live and travel alone anymore. My Gaga has Alzheimer’s Disease and it’s heartbreaking for all of us, especially my mom who has to make the hard decisions. Gaga is 88 years old and looks fabulous. She’s healthy and happy, but her mind is failing her. Earlier this week, she walked out of the assisted-living home she has been in for 2 years (one our family LOVES), looking for my uncle (who lives next door). Because she does have dementia, this could have been very dangerous if an employee hadn’t caught her and leaving without a family member is against their policies. Sadly, she has to find a new place to live with security specialized for memory-care patients.

Fortunately, my mom can devote her days to phone calls and visits to find a place she can move her mother to, but the entire process is draining and just plain sucks. The memory-care facilities that are nice enough for someone to live decently can cost $4-6,000 per month and most don’t take Medicaid. So unless you’re Bill Gates and can afford to send your parent/grandparent to the best of the best via cash , it’s a crappy situation. Not to mention, seeing your once-independent, vibrant grandmother have to get 24/7 care because she could dangerously wander out onto the streets.

I pray that the perfect place for Gaga to live and thrive at will appear and we will find a means to provide. If you’re the praying type, will you please keep my family in your prayers? I’d really appreciate any good thoughts at finding the best place for my Gaga. After a lifetime of caring for others, it is our turn to care for her.


  1. Karen says

    Oh, Joanna, my heart breaks for you. I will keep your Gaga in my thoughts and hope that something comes up that is affordable and will keep her safe AND happy. All my love to you and your family. xoxo

  2. Cynthia says

    What a beautiful tribute to her amazing life you’ve written here! It is heartbreaking to hear the situation now though. I am thinking of you guys. I feel for you all deeply. Xoxo

  3. Kelly Butrimas says

    Joanna, thinking of you and your family. We recently placed my husband’s grandmother in a memory care center. It wasn’t easy but luckily it was one that I worked in so I was able to check on her daily. Before having my second son I worked for Brokerage Living. They have facilities all over providing different levels of care including for Alzheimer’s. I’ve worked with this population for years and brokerage has some of the nicest centers I have seen. Not sure if they are near your mom but Its worth checking into. Hoping your family finds something that works for everyone.

  4. Amber R. says

    You have a beautiful, amazing family! I live near St. Pete myself and love it here. I know this won’t help you right now, but I’m fascinated by a new concept of care overseas. Here’s the link: http://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373

    • Amber R. says

      One more link: http://www.ospreyobserver.com/2014/03/new-assisted-living-facility-the-crossings-breaks-ground-in-riverview/

      Not sure where you’re looking, but a local paper had this article. There is a new assisted living place opening at the end of the year across the bay from St. Pete. It sounds upscale, though, so it may be expensive. Thought I’d mention it because they’re not advertising yet. When they do, the website should be: http://www.saberhealth.com/facilitiesFL.php