Memory Care for Lisa

UPDATE: Lisa passed away on the 25th of February, and is finally at peace. In full transparency - we, her family, are still in need of support to help us through this difficult transition. We are forever grateful for all of the incredible support we have received thus far.

My mom is suffering from Frontotemporal Dementia and Lewy Body Dementia. She is 55 years old and has been experiencing symptoms for about 5 years. The average life expectancy for someone with this disease is about 8 years after the onset of symptoms. She is unable to work, she needs assistance eating, bathing, she wanders and gets frustrated and confused, and she doesn’t know her own husband or children. At this point in the progression of her disease, she requires constant care. My dad is her sole caregiver and has been since the start of this. He is supporting himself, my mom, and her aging mother, as well as paying bills and a mortgage with his single income.

On the 1st of November my mom had her first seizure, then another. This was a major turning point. She was hospitalized, and since then she seems to get worse by the day. My dad was out of work for a month during and after her hospitalization. During this time he also unexpectedly lost his younger brother, and continued to lovingly care for his partner with no time at all to grieve. He went back to work, but was only able to do so for about a month before having to go back to staying home with my mom full-time. He can no longer work while being her caregiver, but my parents do not receive enough money from Medicare to even stay afloat - let alone pay for professional support for my mom. There are no resources available to her, and we don’t know what to do. Every adult daycare and full-time memory care facility is self-pay (an average of $6,000-8,000/month), and my parents can barely afford groceries right now. Even if my dad sells their house, the house they poured so much energy and love into and raised their family in, he would not be able to pay for the care she needs.

I am the oldest of three siblings, we are all under 30 years old, we don’t make good money, and we have no resources or connections to help improve our parents’ situation. We don’t have any extended family to help - it is just myself, my siblings, my parents, and our grandmother. We need help.

My parents have always been such good people. They met working at a youth crisis center. My dad continued on to become a licensed counselor and has worked 2-3 jobs at a time my entire life to support our family, while our mom raised her children with intention and love and was actively involved in all parts of our lives. She held positions in the PTA, led our Girl Scout troops, made Halloween costumes and helped with school projects and science fairs, she organized a yearly Thanksgiving community meal at her church, she volunteered at the community resource center, herself and our dad ran youth groups and mission trips ever since they were my age. My parents accepted all three of their unique, queer, neurodivergent children and created space for us to bloom and grow in our own time and direction. They raised us to be kind, compassionate, empathetic, and they do not deserve this ending. Our mom doesn’t recognize her best friend and husband of 30 years, she doesn’t remember having kids, nor does she realize that she’s finally a grandmother (something she was so excited for). She’s only 55 years old and she is slowly, horribly, dying without knowing what is going on.

There is nothing any of us can do to stop what is happening, but there is a chance for my parents to be able to retain some dignity. There is a chance for some of the weight of this burden on my dad to be lifted. All I want is for my father - a man watching his best friend, the love of his life, deteriorate before his very eyes - to be able to focus on his wife, to be able to hold my mother’s hand for as long as he can and after that, to have the privilege of grieving.

If you are interested in providing a meal for my parents, a family friend has set up an ongoing meal train. Click on the following link to claim a date. We are so incredibly grateful for your support.

 https://www.giveinkind.com/inkinds/B2W9M8N