We Live in Dementia Land

Written in the Spring of 2023:

This is the story of an only child’s journey through dementia with her mom. This is the story of a families walk through a hard path together.

This is my story. The story of what it’s like to lose people before they are gone. The story of what it’s like to raise children while simultaneously losing your mom, in a slow and painful way. The story of a daughter’s journey through dementia. This is my story.

My Mom has Alzheimer's type dementia. She is 72 and she started showing early signs of dementia over ten years ago. My Dad and I began to notice signs within the first year after her mom died in late stages of her own journey with dementia. I have known life with dementia longer than I have known it without. For more than 20 years I have experienced what it’s like to grieve loved ones before they are gone. I have watched memories fade away like ice melting on a hot day. I have spent countless hours preparing meals, calming anxieties, reassuring confused minds and holding the hands of those who used to hold mine.

About four years ago my Dad and I began discussing the very real possibilities that we were about to face in terms of caring for my Mom. After months of discussion we (my parents and myself and my husband at the time) made the collective decision to move our families into one home together in hopes of prolonging my mom’s ability to remain at home with her family for as long as possible. Unfortunately that move coincided with the lock down brought by COVID and my mom declined a lot within our first year in that home. She lost the ability to do many things that once gave her a sense of independence, purpose and belonging.

I spearheaded changes around our home, to our schedule and reached out for local support all in hopes of finding ways to care for my Mom. Together we worked as a family to make changes to support my Mom as she lost more and more of herself. We worked together to keep her safe and calm her anxieties when she would get confused and we watched as her memories seemed to fade quicker and quicker.

Our family spent the following year facing so many changes together. My dad and I had to face the question that we had dreaded for years. Was it time for mom to move into a home where she could get the support she so clearly needed? We knew that it was no longer an option for my mom and my kids to live in the same house and ultimately the decision was made to try and buy her some more time at home. While all of this was happening my husband and I were going through a journey of our own which ultimately led to the end of our marriage, but that’s another blog post all together.

I moved into an apartment and my ex-husband and I learned how to co-parent together while sharing time with our kids. My Dad stayed in our home and provided my mom round the clock care for months until that was too much for him. We got help to come in to the home and provide him relief and that helped for a while. The last few months my Mom’s memories of the past have nearly vanished and her short term memory is nonexistent. It has been brutally painful to watch my Mom disappear right in front of me and I know that it has been the same for my Dad.

Earlier this year my Dad and I decided that it was best for me to bring Mom to Florida to stay with us in our home and give Dad a chance to breathe. This was helpful in so many ways! My kids and I got to create so many memories with my mom that we will cherish for years to come, my Dad got a much needed break for himself and my Mom has been able to have experiences that fill her soul.

Throughout the month while my Mom was staying in our home I had the very sobering realization of just how hard this path through dementia is. I am now seeing and experiencing first hand what my Dad has been doing for years with very little help. My mom needs constant round the clock care. She no longer holds memories of most of my life, and sometimes she gets confused about who exactly I am…or more correctly which version of me she is with. Sometimes she sees me as the child or teenage daughter she remembers having. She often doesn’t know where she is, why she is there or who the people around her are. She experiences anxiety but no longer has the ability to recognize that is what she is feeling. My role as daughter in my relationship with my Mom has become much like the role she played in our relationship when I was a child. I do my best to calm her fears and support her in finding new ways to care for herself.

I am very grateful for this time that I get with my Mom AND it is the hardest thing I have ever done. Holding my mom’s hand through this and becoming the caretaker for the woman who used to care take me has been painful and confusing. I learn and grow through this experience every single day and I see a bright side of dementia. My mom is able to fully immerse herself in the moment that she is in. She isn’t bothered with thoughts about yesterday or tomorrow and she usually doesn’t have a worry in the world when she is engaged in something. Being present is a skill that many of us strive to possess and I see a glimmer of magic in that for my Mom.

One day at a time, my Dad and I make the best decisions that we can to provide my Mom with the care and dignity that she deserves. We recently made the incredibly difficult decision to move my Mom into a memory care facility in Florida, just ten minutes from my home. Although this move came with a lot of pain and discomfort for all of us, we are so grateful to know that Mom is safe, well cared for, and having many more moments of joy than she was having. I often wonder how I am possibly qualified to wear the many hats that I wear in this life, this being at the top of the list. How am I supposed to know what is “right and wrong” in making decisions for my parents? But then I remember that they did that same thing for me when I was born. I didn’t come with a manual and neither did they. We are all out here just doing our best, with the information and intuition that we have. And honestly, that’s enough.

This is my story. This is my story of growth, faith and resiliency. This is my story full of lessons and hope for a bright tomorrow.