My mom, Kay.

My mom, Kay.

Alzheimer’s is a fight that hits home for many of us. For me it’s very personal.  I remember being 14 years old when my grandfather called me by my mom’s name. The look on my face must have cued him that I wasn’t Kay so he proceeded to correct himself by saying, “I mean Barabara…Alice…”  who were my aunts. At my young age I thought it was humorous but I could see the struggle in his eyes to bridge the gap between who I was to him.  Although he didn’t know my name, he knew who I was. I knew this then because he was still comfortable, warm, and the strong grandfather that I knew.

Twenty years later at the age of 34 I was visiting my parents in Florida when my mom woke up one morning and was startled to see my son and I cooking breakfast in “her” kitchen. She looked at us at as in complete fear and demanded to know what we were doing making ourselves at home in “her” kitchen. When I tried to explain why we were there, she argued for us to get out of her kitchen. This wasn’t so humorous to me. It angered me and broke my heart at the same time. The look in her eyes…She struggled to understand why we felt comfortable to be making ourselves at home in her kitchen.  She felt inadequate as if we were trying to take her role away from her…her independence.

Our family didn’t know how to handle the memory loss that my grandfather and mother had.  It was embarrassing to go out in public and after a while became impossible to do just that without interrupting what tiny “normalcy” they had left. My parents did not set aside funds early in life for “Alzheimer’s Care” because a plan wasn’t available. Long Term Health Insurance was extremely expensive so my Mom’s treatment was solely dependent on the what my Dad’s Railroad Retirement Medical would cover. Medicare would not cover the expenses of an Alzheimer’s specific Nursing Home and covered a limited time period of in-home health care. She wasn’t physically ill, her organs were fully functional so physically her life wasn’t in jeopardy. Mentally was another story.

The above two scenarios are just two small instances of many years of obstacles and struggles that my family went through in living with Alzheimer’s.  I know that there are millions of other stories just like mine. The disease has had a massive impact on my whole family for decades.  It is a disease that just doesn’t affect the victims but the families as well. It is a painful struggle to see someone you love deteriorate before your eyes and turn into a different person. Financially it takes a tool on caretakers as well.

Having the assistance of trained professionals can be invaluable for families in caring for their loved one.  Maintaining Increased social interaction and brain activity can have a great impact on patient’s quality of life and eventually the length of it. My mom’s level of care was compromised by the financial constraints. When the amount of coverage that Medicare would supply for in-home health aid assistance was exhausted, that was the deciding factor on whether in-home healthcare would continue to come. Unfortunately, in her case, it did not and my father was left with the burden of taking care of her. He couldn’t leave the house for months except in very small increments whenever a church friend could come over to help sit with mom.

The type of assisted living facility that my mom was finally place in during the last months of her life was determined by what insurance would cover. It was a gut wrenching experience that had the hospital placing her in a psychiatric facility first because that was the route that Medicare would cover first. I firmly believe that if my parents had greater financial resources, my mother may still be alive today. She was only 67 when she passed. My mom’s passing left me wanting to help other families avoid some of the same financial struggles that we had to make.   

Remembering Kay is a 501C3 launched and dedicated to raising funds to help families fill in the in-home healthcare and assisted living gaps that insurance does not cover. Events and fundraisers will be held quarterly to generate income. Donations are accepted throughout the year. 100% of the funds raised will be distributed to families in need. Grants are given to families bi-annually and are done through an essay submission selection process.