I’m walking for my grandparents, my uncles, and most importantly my mom.
Here’s my story.... My mom was diagnosed at the age of 52, I was 19. Most people think of dementia as an older persons disease. Memory loss is not a normal part of aging. Growing up my mom was my number one cheerleader. She was always there for my sister and I. Never at that age did I think my world would be flipped upside down. I can still remember the day she was diagnosed like it was yesterday. My dad and I took my mom to her doctors appointment where they asked the 3 of us all sorts of questions. Then we left my mom there for some cognitive testing for about 3 hours. I remember feeling so nervous, what if she had cancer or a brain tumor? We picked her back up went to lunch so the office could go over her results. We headed back to the office and sat in a dimly lit room. The doctor said you have frontotemporal dementia. All I heard was dementia I didn’t know what frontotemporal meant. I was thinking there’s no way she’s too young. We all cried and we were in shock of course. How could my mom be sick with dementia. I knew there was no cure but when the doctor said there was nothing they could do it broke my heart. We immediately sought out another opinion. My cousin (who worked for our pcp) got us an appointment with the best doctor in the area, Kevin Foley, at st. Mary’s Hauenstein center. At that appointment I remember us all sitting in the room while they asked my mom to follow directions and do some simple tasks. To her they weren’t simple. I killed me to not help her and see her struggle like that. We met with a social worker, the nurse, the physician assistant, and the doctor. The doctor sat in the room with us while he was thinking out loud of all the possibilities it could be. He came to one conclusion and one only, frontotemporal dementia. This time is seemed more real. We’d have to wait six months for a second evaluation so that insurance would pay for a PET scan, to confirm the diagnosis. After the PET scan it was confirmed she in fact had frontotemporal dementia. Literally, life would never be the same. We never really made a plan of any kind almost until it was too late. And what I mean by that is, we needed a plan in place as to when or if she would need to be placed anywhere when we were unable to take care of her. This was mostly left up to my sister and I. My dad was consuming himself with drinking. My sister and I were both in college and both working and I was pregnant. My dad ended up having a psychotic break and was in the hospital for two weeks. When he came home we decided that we couldn’t care for our mom at home anymore. I was scared that I wouldn’t be able to take care of my mom and a baby at the same time. I didn’t want my sister to give up on school and my dad was not in any condition to care for my mom any more. So the search began. I went to look at some places by myself and some with my dad and sister. I was so worried about how we would pay for these things. I was not financially stable and my dad was spending most of my parents income. This was reality. What in the heck were we going to do. Shortly after I became POA, we went to court and she was assigned a permanent guardian from the state. We got so lucky with her guardian who genuinely cared for her and had her best interest at heart. He found her a beautiful place to live at the time and something that she could afford. I visited frequently along with my son. We still would bring her out to participate in our holidays and everyday activities. Fast forward a few years later and I went to pick her up to look at a new AFC home because we could no longer afford where she was living. I noticed she had abrasions on the tops of her shoulders. No idea how this happened, but you bet I reported that. Something just wasn’t sitting right with how she had gotten those marks on her shoulders. So I ended up taking her to visit her potential new home, they had been recommended by a few people. It was called Rehoboth. They were so kind and generous and the best possible place my mom could have lived. The owner, Jen, offered to have my mom live there starting that night after she saw my moms shoulders. I instantly felt comfortable with my mom being there. So I left my mom there and went back to pick up her stuff at the other place. I cannot say enough good things about Rehoboth, Jen, and the rest of the staff there. They took wonderful care of my mom. She spent the last 4 years of life at Rehoboth. My mom, I believe, truly enjoyed herself there. She slowly declined over the 10 or so years she had the disease. It was hard, I’m not going to lie. It was a constant grieving. There was always something she wasn’t able to do anymore. I will say the middle is the hardest. You feel like your drowning and don’t know how you will survive. It’s the point when the person with the disease knows something is wrong and is aware their brain is shrinking. The very end wasn’t easy either. While she was actively dying it was a struggle for her and us. Once she passed I felt a sense of relief. Relief that she wasn’t struggling any more, she had her memory back, she was happy, she wasn’t stuck any more, she could communicate.
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