My Sister Log 1: What happened to my sister?

My sister and I grew up together, we are only a year apart in age.  She is the oldest.  I consider her to be very intelligent.  She went to college and got her doctorate in Veterinary Medicine.  While we grew up together as we got older, we developed different interests and beliefs.  Despite our differences we always kept in contact with each other. 

After she finished college she moved to a suburb of Chicago, Illinois area and I basically lived in a different state, but we would try to get together for holidays. 

My sister was the social butterfly of the family; she would keep in contact with other relatives and went to more family get togethers than I did.  I would call and talk to her several times a month and it seemed like she always had updates for me on what was going on with all my aunts, uncles and cousins.   

In 2010 my sister had decided to move my mom out of her house in Iowa, as she felt my mom was no longer able to live independently because of Huntington’s.  My sister, being married, thought that her and her husband could take care of and look after my mom.  In 2011 my sister asked me to move from my place in Kansas City, Missouri to be closer to her in Illinois to help her take care of my mom who was deteriorating physically from the effects of Huntington’s.  I moved to Illinois to be closer to help with my mom, which included bathing my mom twice a week and doing laundry and giving my sister some free time a couple days per week.  Eventually we ended up putting my mom in the nursing home.  My sister and I talked a lot either over the phone or in person, until September 2017 when my mom passed away.  We talked less after that but would still try to get together for holidays.  When COVID hit, we went 1-2 years without getting together for holidays, but we talked over the phone. 

I think it was in 2024 when I started to notice changes in my sister when talking to her on the phone.  My sister, who once used to lead the conversation now had nothing to talk about.  My sister, who once used to always have interesting stories about work to share, had nothing to share.  At first, I just brushed it off as maybe her life had become less interesting, or she wasn’t willing to talk about it anymore.  

My brother went to see my sister in October of 2024 and talked to me after he said he noticed that she was not the same, she was not the sister he remembered from growing up with her.  He knew it was Huntington’s, but she had not been tested so there was nothing we could really say about it.  We couldn’t even tell her that is what we thought, because she would not have heard it from us. 

At the end of 2024 my sister retired from her job as a veterinarian.  She wasn’t old enough to retire, so I was unsure as to why she retired.  I didn’t find out about it until early 2025 when I talked to her on the phone.  We were in a conversation, and she was mad at me for not coming to her retirement party, when I didn’t even know she had retired?!?  I asked her when she retired, and she said the end of 2024.  I asked her about why she retired, and she gave me a very vague answer, which was no answer.  It is like there were missing puzzle pieces to what was going on with her and no answer for them, at least not to me.  This was the first real clue that she was not the sister I knew anymore.  Even later in the year of 2025 it came up multiple times in conversation about how I had missed her retirement and missed the lasagna she had made.  I had to remind her multiple times that I had never gotten an invitation, or I would have been there.

I remember growing up with my sister, she always enjoyed putting puzzles together.  As she progressed to getting older the puzzles came to have more pieces and more difficult pictures.  I think her largest puzzle may have been 5,000-10,000 pieces.  Experiencing the changes I have noticed in my sister could only be described as missing puzzle pieces to a 5,000-piece puzzle.  At first glance from a distance most people who did not know my sister would not even notice if one piece was missing.  Even those who may seem close to her who hadn’t known her all their life would probably not notice.  Even if she went to a doctor’s appointment for a short time of talking to her, they would not be able to see the subtle changes that have taken place in her.  But for family that had grown up with her it has been obvious.