One Year Later

A year ago my life changed dramatically. I went from being a caregiver of a parent to not being one very quickly - had plans to go see Dad and Mary that afternoon and received a call from the memory care nurse at 11:53 am that I needed to come right away and he passed before I got there 30 minutes later. Even though my dad didn't live with us, his presence in my daily life had a huge impact on my family and I for 3 years and 7 months. His last four weeks on this planet were documented on his CaringBridge page (caringbridge.org/visit/fredjewell-justme). The support received through this page and elsewhere was greatly appreciated. 

My father was primarily a nomad a lot of his adult life. Even if he had a place to call home, he traveled for business a lot. Mom died from breast cancer when I was a freshman in college in early 1988. That summer, my dad moved from the rental house we had with her to an apartment and then into a condo he bought a few miles away in 1989. That was his bachelor pad with a 2nd bedroom upstairs for guests. There was no consistent contact with a home base for me after my mom died - no set weekly phone calls with my dad, no relying on him for any basic needs aside from some monetary funds or help moving the 5 times I moved when in college like some dads provide, not even set birthday celebrations or anything like that. My mom's family worked like clockwork for celebrations down to knowing who hosted which event each year until my grandma on that side passed away in 1998, 10 years after my mom did. That was the same year that my dad retired and abandoned having any home base for about 10 years. My kids didn't grow up going to visit grandpa's house. My dad showed up here for 3-4 weeks once a year and lived with us - many times when the kids were starting back up at school in August. He hoped that the kids connected better with him this way than short visits throughout the year. I think that worked better for my brother Andy than it did for me since Dad loved Oregon and they'd do minivacations while he was there. Dad was worn out when he arrived here and was ready to diet. The kids, especially Joanna, usually enjoyed his traveling companions more than him on his visits, especially Mary, who would play with them at their level. These visits would add stress to the family dynamic and throw the kids' routines out of whack, on top of the stress of school starting. The last such visit was in 2015. In 2016, he only stayed a week and he was already showing signs of Lewy Body Dementia but we didn't know what it was then. When he did establish a home base in 2009, it was 3,000 miles away. We went there as a family once in 2010 for a couple of days between Disney World and Washington DC on a 2-week trip. 

Although Dad's death was a blessing considering how awful Lewy Body Dementia made him feel and function and my life is considerably easier since his passing, I guess I miss him and his huge personality. I know he loved me and having one less person in the world who loves you has an impact. 

Since before his death - probably in a large part due to the pandemic - I've felt disconnected from everyone except a few close friends (local and faraway) and my kids and husband. This feeling is what led me to a strong belief that I needed to return to the Midwest. It hit me like a wave in January 2022 after I returned by myself from Indiana - a week before John and Joanna did. John's dad turned 90 on January 2nd and we were there to celebrate with all of my husband's family who live in Indiana. John and Joanna stayed to spend more time there and visit some colleges. I am incredibly grateful that John listened to my feelings and that we are moving to Indiana but wish there wasn't so much to do to make that happen. But we'll get there.

Leaving San Diego will help my healing journey as well since this place is now associated with him having Lewy Body Dementia more than anywhere else. 

I'll try to write more about my life as I do find it to be cathartic. Thanks for reading.

Thoughts on My Dad and Lewy Body Dementia - Written on 5.17.21 - Posthumunously published on 2.22.23

My dad has Lewy Body Dementia which affects a lot of things about a person both cognitively (fluctuations in thinking - especially decision making and problem solving - and hallucinations) and physically (autonomic systems and Parkinson-like symptoms). For many people, it ends up also changing their personality from sweet and mild mannered to paranoid, accusatorial, and mean - it's a horrible disease that causes confusion, memory lapses, and hallucinations but also can cause the filter to go away when the person with the disease is dealing with their loved ones or caregivers. 

However, my dad's nature has not always been sweet and quiet. I have come to realize that my dad has fought anxiety all of his life with no therapy and no medications until he was over 65 (occasional Xanax) and no SSRIs until he was 75. He self-medicated with manhattans or martinis and still says a glass of wine helps him relax. He actually says the anxiety helped him in his career. Maybe it did but it made for an interesting childhood and life, at least for me and probably my two older brothers - but they were boys so it was different for them.

Luckily, he had jobs where he traveled a lot or worked a lot so he wasn't around half of each week. My mom was very level-headed and seemed to keep his anxiety away from us pretty well. I have memories though of when he would go on a cleaning rampage around the house wanting everything to be in their place. He would even get upset if a library book I was reading was out on an end table, though that is where it belonged. He also was horrible to have around if a car was being packed for a trip - his anxiety and difficulties with spatial problems were a bad combination. My mom would send him back into the house. 

However, when he got upset, he got upset - not physically - just emotionally. He did not keep his cool very easily at all. I learned most of the swear words as a kid just hearing him argue with my mother growing up. When he got angry at me when I was a kid, he could drive me to tears in seconds and then tell me to turn off the waterworks. He never understood how to relate to a daughter. He mocked me after I tried to start playing team sports when I was 12. He didn't understand how that made me feel. He was not good in school but had incredible social skills which was perfect for his occupation and helped when I started branching out socially and let grades not be my only focus. As long as I didn't do anything to upset my mom, I flew under his radar most of the time.

My mom was diagnosed with breast cancer in January 1985. She had a mastectomy followed by a full hysterectomy a month or so later. Then it was chemotherapy. Then radiation. Then tamoxifen for a year. Then that stopped working and she passed away about a year later...February 1988. He confided in me when I was 16 that he would leave my mom if she did an experimental treatment because he didn't want to be married to a vegetable but was afraid that everyone would think he was an a**hole if he did. She didn't do it. Probably would not have helped anyway, she died when I was 17. 

He could get me to sobbing over the phone in college as my roommate and best friend witnessed many a time. Years later, when I was 32 and I was getting divorced, I called my oldest brother and asked him to tell our dad that I refused to speak to him again if he kept getting mad at me because he didn't trust that I could do what was best for me and my kids (I still live in the same house, I think I managed the divorce settlement quite well). My dad told me to marry rich the 2nd time around, that didn't happen.

My 2nd husband even said he would divorce me if I ever left him alone in the car with my dad again only 6 weeks after married me. All they were doing was trying to find a parking spot in a crowded tourist area. My dad bought hook, line, and sinker into Fox News and assumed that they were only ones telling the truth - though he admitted he liked finding a news source that "thought" like he did so he had to know it was biased - well, his favorite song is "My Way" by Frank Sinatra - so maybe he did.

My dad has the ability to get me worked up often even now, but I knew that fact when he got wonky in summer of 2018 and I said that he should come live by me while we figured things out (him and his girlfriend who already had Alzheimer's but who we thought was a saint for being with my dad for over 10 years). My dad was diagnosed with LBD 3 months after moving here. Now he's been here for almost 3 years and he's becoming more confused, more paranoid, angrier, and less thankful for the help I provide...but at least I usually get a hug and a thank you when I leave - often after being sworn at and accused of everything ludicrous under the sun. However, I am grateful for the times he is thankful.

It helps to write this out. I love my dad but he's never been a person that I would choose to be around just because I enjoyed his company, that was my mom who we lost over 30 years ago. Everyone else loves being around him and finds him to be charming, even now he is still pretty good at "show timing" though that is getting harder to do. Watching a man who independently traveled all over the country for around 10 years deteriorate is hard, I can only imagine how hard it is for him.