Tag: early on set alzheimer’s

Welcome!  I hope that this blog will help those at any point in their journey with Alzheimer’s to know that there are others going through the same thing.   My Dad takes care of my Mom full time and has since he retired in 2012.  My sisters and I are using this blog to document what has and what will happen and to be a resource for others.

In the beginning, there were small signs that Mom was sick.  When you look back it is easy to string them all together.  How she quit Pottery Barn because she was so intimidated and flustered by the register.  How she got up the courage to make flyers about a home staging/decorating business.   I helped her to distribute them around a few neighborhoods near her.  Her first customer called and she went to help them!  It was exciting for her.  Later that day, Mom was distraught because she had overcharged them.  She went and gave them back their money, but I know she was embarrassed.  In 2009 we had a garage sale.  Mom always took care of the money box.  This time she didn’t seem as interested.   A woman bought something for one dollar with a twenty.  Mom could not make the change.   Another instance—she had a doctor’s appointment but came home without making it there because she got lost.  She was crying and very upset.  She could not problem solve to call the doctor or one of us to get help with directions.  Mom was diagnosed with Posterior Cortical Atrophy in May of 2009.

By: Betsey

In the Beginning

She was 59, I was 29. Alzheimer’s. The word blew me away. She was so young. She didn’t even have gray hair. I knew nothing about Alzheimer’s disease, but I thought the disease happened to people much older than my mom.

I remember the first emotion I felt was shock. I kept hoping it was a mistake.  Maybe they misdiagnosed her and we could get medicine or a surgery early and beat whatever it was?  But the truth was, it was in fact Alzheimer’s disease and it came for my mom early.

After the initial disbelief, a strong sense of guilt set in. The year before the diagnosis, I was living at home. I was preparing to get married and was living with my parents while I was starting a new job. I spent a lot of time with my mom during this period and I noticed small changes. I teased her for forgetting things. I got frustrated with her when she did something strange or forgot simple things. I had noticed her confusion while balancing the checkbook and the fact that she started to quit activities that she previously enjoyed. She seemed angry and defensive. She wasn’t comfortable driving beyond a certain point from home. I noticed all of these things, but I hadn’t even considered Alzheimer’s. I hadn’t thought that she needed help.

Guilt is the emotion that dominated initially. Forgiving myself took a long time and sometimes I still feel a sense of remorse when I look back on that time. I should have done more. I should have been more compassionate. But at some point, you have no choice but to forgive yourself, because to go on this journey, your loved one needs everything you have going forward. You have to be strong and ready to go on this ride with them.  I had to put my guilt and fear aside and accept this previously unknown disease as a part of my mom’s life and as a part of my life.

In the End

As we start this blog to tell our story and to open our lives to others on this journey, we are 9 years past the diagnosis. We are in the end stages of Alzheimer’s disease. My mom continues to battle courageously and we all continue to do our best  to adapt along with this rapidly changing disease.

Since the diagnosis, my sisters and I have changed careers, married, had babies, and learned more about caregiving and illness than we planned. We have watched the subtle changes and weathered the dramatic. We have watched our mom forget basic skills and ultimately forget our names. But, every day we continue to live our lives while trying to honor and respect hers.

Although I know we are here near the end, what we dreaded from the day the word Alzheimer’s entered our world,  in some ways the beginning still feels like yesterday. Sometimes I can still feel the  initial guilt and sense of disbelief.   Looking back, I’m glad I didn’t know all of the things that would happen on this journey. Maybe we all wouldn’t have been as brave.

If you are just learning of an Alzheimer’s disease diagnosis in your life and even if right now you aren’t feeling brave enough to handle this  journey,  let a little courage in at the beginning and it will grow along with you along the way.

By: Melinda

It has been nine years since Mom was first diagnosed with post cortical atrophy. I was living in Hawaii, watching the sunsets, playing in the ocean tides and lounging on the soft sand beaches. I was single and really didn’t have a major care in the world. Up until that point I had made decisions based on what was best for my life and any goal or dream I set out to achieve, I just did it. I wanted to be a photojournalist, so after college I packed up and moved to Colorado where I did just that.  I had a free ski pass, met a lot of celebrities and enjoyed mountain life. After years of being cold, I decided I needed to move to the beach, so I moved to Hawaii. Three years into Hawaiian life, my world changed.

When I got the call in 2009 walking along the beach, it changed my life. Dad called saying that Mom had emphysema (yeah, I said emphysema, random, I know). One doctor thought that was what was wrong with her. Mom had never been a smoker through my whole life and I had never heard of her being a smoker before I was born. I’m fuzzy on the details but the doctor quickly changed her mind and a neurologist diagnosed her with post cortical atrophy. Which what research says leads to Alzheimer’s.

I was now faced with making a decision for myself but also the best interest of my family. I didn’t want to have any regrets and perhaps if there was only a few good years left of Mom being Mom, the best decision for myself, my mom and my family, was to make the move to Missouri to start on this heart wrenching journey of supporting her through this disease.

It was a hard and huge decision for me, since Mom and I were never in my mind “close”  and it probably took me longer than it should have, but I decided to make the move. In that decisive moment, the hope of grabbing onto any last minute moments and memories with Mom and perhaps feeling closer to her, as well as being there for my family, was the motivation. It has been an emotional and ever changing 9 year journey this far.

I hope that our experiences of going through Alzheimer’s with  our mom will help you through the small and major decisions that come with this disease, but also most importantly remind you that you are not alone on this journey. We are here for you.

We are Mary’s daughters. We literally grew up with a white picket fence around our house. Our house was beautiful and our mom was the ideal mother. She always had a nice meal on the table and every holiday and birthday was special.  When she was diagnosed, we were planning our weddings, starting our careers, and having babies and our mother was starting to lose her memories of us.  Nearly a decade later, we are still learning and doing our best every day as we try to keep up with the constant changes of this disease while raising our kids and balancing our careers and personal lives.

We are so lucky to have each other to lean on and to have  sisters who always understand what you are going through. We have chosen to write this blog to share our story with those of you who also have a loved one with Alzheimer’s disease so that no one has to go through this alone.

Who we are:

Jenny – I’m the oldest daughter.  I have a great husband and two busy boys under age 10.  I’m a teacher.

Mindy – I am a wife, mother, and teacher. I love travel, art, and photography.

Betsey – I am a wife, mother of two, and an attorney. I am the youngest daughter.