Tag: Alzheimer’s; Mom; early-onset

By Betsey

Alzheimer’s Disease impacts people in different ways.  Life-spans can vary and the stages and symptoms of this disease can affect people in sometimes unexpected ways.  It is surprising to most people that loss of memory of her loved ones only came fairly recently for my mom.  I would say it was only about two years ago – so 7 years after diagnosis, that my mom stopped being able to recognize most people.

In the beginning, we were all very concerned about the timeline.  What were we looking at?  What should we expect?  How fast would this progress?  If you read the statistics for early on-set Alzheimer’s Disease, it was expected that my mom would live 3 to 5 years.  However, our doctor was reluctant to give us a timeline and I am glad now that he didn’t as we would have blown that out of the water!  It has been 9 years since the diagnosis and my mom has been relatively healthy.

Our mom was diagnosed with posterior cortical atrophy, which is consistent with damage to the area of the brain responsible for processing visual information.  Typical with this form of Alzheimer’s disease, early on she demonstrated confusion with math, directions, and handwriting.  She wouldn’t see things that were right in front of her (much like my husband, and probably every husband in America….)  At first, should couldn’t figure out money or math but her memory was very much intact, so for that we were lucky.

In the beginning our mom seemed relatively like herself.  My dad still worked full-time and was gone during the day and Mom stayed home alone.  She stopped driving right away but would still usually cook simple dinners and clean the house.  I remember she seemed a little lost and she was often lonely during the day.  During this time, she still seemed like herself in many ways but she also seemed like a softer version of herself.  She laughed more and seemed more gentle.  I distinctly remember being in the car with her and we were driving across the state.  My mom reached over from the passenger seat and touched my hair and told me that I was pretty.  My mom was never uncomplimentary of me, but there was something so unexpected and tender in the way she made this statement.  It caught me off guard and it is hard to explain, but in a way, that is the day she goodbye to me and that is how she did it.  In that one gesture and compliment, she said so much more.  It’s the last real moment I remember where my mom was there present with me as a mother to me.  It was a send-off, a transition, an apology, and a goodbye all wrapped up in a compliment.  Although she has been very much present since that time and has known who I am until recently, to me that was the last moment that she looked at me as a mother looks at their daughter.

After that, she moved into more of a child-like state.  She was emotional and non-sensical at times and you had to do a lot of prodding to get her to comply or follow you.  During these years, in our effort to Run for the Sun, we took our mom to see a taping of the Ellen show.  Early on, when she was home alone while my dad continued to work, she would watch Ellen and laugh and dance around.  We were lucky to get tickets to a taping and us girls flew with my mom to Los Angeles and got to see Ellen! That was the last time my mom flew and it was starting to get difficult to travel with her, but we made it just in the nick of time for an amazing trip.

I remember during these first few years we would hang out with her and take her with us shopping and to run errands much like we used to before the diagnosis.  She enjoyed getting out and about but would follow us around a little like a child. She sometimes would call out things trying to make sense of them.  I distinctly remember going to Old Navy with her and my young son while pregnant with my daughter.  My son was going in and out of the clothes hiding and my mom was following me around with a pair of men’s pants in her hands asking me loudly – whose pants are these? I was chasing my son whilst waddling around and trying to also keep my mom with us, making sure no one got lost or bought men’s pants.  I remember shaking off the concerned look from strangers and my mom and I both laughing at ourselves. She still was aware enough at the time to know we were a sight to be seen.  Sometimes things were/are just so desperate, you had to laugh.

During this time, we would take my mom to wedding showers and parties and dinners out.  We didn’t want her to feel left out and wanted to enjoy these life events with her. This happened for the first few years.  However, one day, about five years after the diagnosis, we noticed her tearing up and becoming agitated in these settings.  It was overwhelming for her and the tide turned from being kind to her and wanting to include her, to putting too much on her and putting her in an uncomfortable situation.  We still got her to go to the zoo with us and  to the occasional sporting event for the kids, but it slowed down considerably at this mid-stage of Alzheimer’s.  It was overwhelming and overstimulating for her to be in crowds and after that, she began staying at home much more.

In the beginning years, things were difficult and changed rapidly but we had a relatively smooth transition into Alzheimer’s.  As we discussed before, we wish that we had kept more detailed notes of what was happening during each phase so we could look back on the timeline to reflect on the changes that occurred.  If you or a loved one is in the early stages of this disease, I recommend keeping a timeline of changes and significant events and I also recommend planning a trip with your loved one in the early days!