My mom recently passed away from Lewy body dementia on 1/9/23. She was widowed at the age of 43, my father died of brain cancer. For 25 years she raised and loved her three children. She battled with anxiety and depression. Also, she was never able to fully get over my father’s death. She never remarried or even dated.
When myself, my twin sister, and my younger brother moved out, my mom stayed in our family home. She continued to be a professor of accounting and business at a community college. Years passed and she struggled to muster up the stamina to get to work due to her PTSD and depression with her loss. Over time, this caused her to be “encouraged” to retire early. Now she was in her family home with 60% of her pay, and alone. About 10 years ago she asked us to help her pack up the house as she was going to be moving into her own apartment. I thought this was great – downsizing after all this time.
My poor mom was a bit of a hoarder and had a lot of trouble keeping things clean on her own. I believe this was a mental health limitation. I walked in and the house was a mess. I couldn’t even see how she was close to getting ready to move. As we were there for hours helping her pack boxes, she told us to hurry before they changed the locks. I was very confused by this. When I asked her, she said she was “abandoning” the home. This shocked me. As a college professor of business, I didn’t know how she got so far behind the mortgage.
My siblings and I helped her move into an apartment in town. In 2012, she was pulled over for the way she was driving. She was on Klonopin for her petit mal epilepsy. The police advised her not to drive when she was on it, that she wasn’t being safe. She gave up driving from that point. She had her kids, and friends that would come in and out of her life to help her. My mom loved hard. She did the same with her friends. She was very lonely, too. Between that and her high expectations people tended to walk away from her friendship, causing her to lean more on her kids.
In 2016 she moved in with my younger brother. He had just been through a divorce. My mom helped him financially and helped him raise his two twin boys that were just a year old. She even helped him buy a house. He helped her get to the store and to her appointments. He also made sure she was safe. She was an active and loving Grammie to his boys. She lived in that home with him for three years.
During that time, around 2018, she had an event when she became very confused and “out of it” at his home. She was walking around without clothes, had knocked a lamp off her nightstand, and her room was in disarray. The EMS had to bring a chair up to bring her down. The doctors said it looked like she had a seizure and was “post ictal” and that is why she was so confused. I want to say she struggled with similar situations over the next four years. It became very apparent when she moved into her own apartment again in 2020; my brother was now living with his significant other. My mom did pretty well – got on the minibus for groceries and did dial-a-ride for her appointments when her kids weren’t available.
In 2021, when I was in my 3rd trimester of pregnancy with my second daughter, she had been begging me to take her to a back procedure as she had no other options. When I got to her apartment, she didn’t answer the door. I knocked, rang the bell, kicked, and yelled. Ultimately, I had to call the police. She had fallen in the shower and had been in there in her own stool for hours. She was hospitalized for that. There were other times my sister and I would go over there to find urine and stool on the floor.
She suffered delusions and hallucinations. She would be waiting for her boyfriend, “Pierce Brosnan,” (the actor) to come back and bring her food they had ordered. Then I had to call and order it for real so that she could eat. She states that she flew to California and stayed at his house. She would become very upset at times when her parents didn’t take her out to lunch when they said they would – they have passed. I would go over there, and she would say that she had been lying in bed watching tv with my dad – also has passed – and having popcorn with her brother – passed away as well. She was very prideful and denied any confusion.
In April she was sent to the hospital by her PCP after she was found wandering around people’s cars in the parking lot of her apartment building. She was deemed incompetent, and a conservatorship hearing was set up for 5/3/22. On 4/26 she was discharged home. We were called the same day telling us that she was now competent and capable of making her own decisions. They sent her home with no food or working phone.
Two days later, we went to the lawyer and drew up power of attorney paperwork for my sister and me. On 5/7, she was found wandering again. Neighbors found her going through cars again. On 5/9 she was sent home once again, even when we tried to fight it. I went to her apartment to try and meet the ambulance. When I got there, she was confused and manic. I couldn’t get her to sit still. She wouldn’t let me leave and kept following me out of the building, going downstairs to do laundry, fighting with her neighbor. At a loss, I called the police. They came and we sent her right back to the hospital. They agreed she was not safe, and that was the last time she was ever home in that apartment.
She went from the hospital to rehab, then to Worthington Manor, which is a rest home. She moved there in June. She was on the third floor and deemed capable of using the stairs. As time went on, she couldn’t do the stairs, so they moved her to the second floor, where they had an elevator. Then, they found her removing her clothing at night, walking the halls, stealing things from other residents, and yelling. They moved her from a single room to a double. They thought a roommate would help her.
My mom had a very lovely aide there that would sit with her at night. They would eat and color. My mom loved doing artwork at this stage. This is also something she loved doing when we were very young. Sometimes she would have the nurses call my sister and me. We would talk to her and encourage her to go to sleep. She struggled being up a lot at night. They did this to help her and kept her up later.
My brother got married on 9/24/22. We were suggested we only bring her to either the ceremony or reception. They felt it would be a very long day and a lot of stimulation. I asked my mom what she wanted (even though they told me not to). She told me my brother was counting on her and she really wanted to go. She saw him married, and she danced with him. It wasn’t easy. We had an aide come with her to take care of her. She didn’t make it until dinner as she started becoming increasingly agitated. But she made it. She’s in the pictures. She was with her family and had her beautiful moment with her baby boy.
Over the next month or so she had more bouts of being lethargic and difficult to arouse at the home. She was still pleasant and loved being with her kids and grandkids. She attended a Halloween party, which was challenging without help. She ended up having a large accident in the bathroom that my sister and I helped clean. For my daughter’s 3rd birthday, we had an aide come with her. It was such a beautiful time. I remember every time someone asked her if she was happy, she said “I am.”
We had spent a lot of time going to visit her. Coloring, painting, going out for lunch, shopping, and of course pizza. It was such a healing part of our relationship. All the pain from our childhood and the past seemed to melt into the background.
Five days after my daughter’s birthday party, my mom was admitted to the hospital. The home could not wake her up. She ended up having a status epilepticus seizure. From that point on she got worse and worse. She was flat, didn’t talk much at all, she was very difficult to arouse, stiff, could not follow commands, and had a tube feed. This was heartbreaking for us. As time went on and all other diagnoses were ruled out, she continued to decline.
We had a family meeting after a month and a half of her being in the hospital. They believe her big seizure caused her Lewy Body to exacerbate quickly. She was brought home to my sisters on 1/4/23. My sister and I are both nurses. We took care of my mom when she was on hospice. All three of her children were by her when she passed. It was the most beautiful and heartbreaking thing we’ve done.
I really hope that someone can benefit from this story. We fought with so many doctors, hospitals, and social workers to make sure my mom was safe and taken care of. At the end of the day, her kids gave her that. I am so blessed to have had this time with my mom.
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March 23, 2023