Here is my story
I wanted to share my story about this horrible disease that has completely changed the strongest woman I have ever known into someone I barely recognize.
In February of 2018, my mom was living on her own in a little house on the river in southern Ohio. She was operating our family refuse service business that we have owned for 60 years. Day-to-day operations, billing, payroll – you name it, she did it. At very least, we spoke on the phone every day on my way to and from work, usually more. I noticed that she was very repetitive on the phone in our conversations but, hey, she was no spring chicken and obviously she was fine. I did notice she had a bad cough and was napping more than she had ever, so I decided to go to a doctor’s appointment with her. While at the doctor I requested an x-ray of her lungs as well as some lab work. I have extensive medical background, so they were happy to do the tests. In the test we found what appeared to be a very large mass covering most of her left lung and starting into her right. I immediately told the doctor to get her chart ready, I would be bringing her to The James for a further work up.
I had her an appointment scheduled in 2 days and we began this journey. At this point we assumed it was cancer and we were prepared to fight with everything we had. Over the course of a couple of weeks we were pumping protein into her making her as healthy as possible for the fight ahead. After a ton of tests and procedures they ruled out cancer, tuberculosis, and a list of other various conditions. Her infectious disease doctors give her a clean bill of health. Physically she was healthy—now to figure out why she was so forgetful and clumsy.
We got in with a neurologist, had a few appointments, and started the medication for dementia Alzheimer’s. We had a few visits over a couple of months and were getting nowhere. She began to decline rapidly. She had been missing payments, crediting wrong accounts, losing money – you name it. So I found a new doctor who was completely amazing. We went for a consultation and he was shocked she had been living alone, driving, working or any of the like. That day he looked at me and said, “You are now the parent and she is a 10-year-old, and you need to remember that with everything.” I have worked as a nurse for several years and I thought “that can’t be true, she isn’t that bad.”
“You are now the parent and she is a 10-year-old, and you need to remember that with everything.”
Fast forward to now, she has been staying with us since this all started, we have had to:
- forcibly take her vehicle away (her freedom)
- take over all her finances, she had given away hundreds of thousands of dollars and had no idea
- remind her to shower
- search her room while she showers for trash and dirty clothes
- unpack everything in her room about once a week when she thinks she is going home for good
- cook meals and set them in front of her or she will not eat
- constantly come up with little chores to keep her moving around
- restrict her phone accessibility because she has given out her personal info.
- keep her from digging in the trash for food or anything
- beg and bribe her to take her meds with sweets
- repeat everything all day long
- be very careful not to make her mad or she will go on a hunger strike
- be ok with her telling random people that I took all her money away
- try to explain daily why she can’t go home alone ever again
- remind her who lifelong friends are
- convince her we haven’t stolen a sweater that she hasn’t had for 20 years
- try to convince her to sell her home
- remind her most daily she isn’t a size 12 anymore she is a 6 that’s why her clothes are falling off
- try and get her to sleep without jeans and tennis shoes on
- watch her so she doesn’t mistreat our big dog for playing with the little ones
- show her everyday how to work the Keurig – we are on #6 since she moved in
- multiple search parties every day for random things she may have had or not had in the last decade
- explain to her that she her life isn’t over but just changing
It is a challenge every day to stay upbeat, laugh like nothing is wrong with the woman who has been so self-sufficient, strong, and just amazing all her life who now needs you to remind her to go potty, drink her juice, eat her meals, brush her hair, and even get out of bed sometimes.
I could go on for days, but the saddest part is when she does have moments of clarity, she always says “I wish it had been cancer because at least I could have fought that. There is nothing I can do for this and no one knows because I don’t look sick.” She beat breast cancer in April of 2017. Immediately after she came to Columbus to be here for me when I lost my kidney, due to cancer as well. Every day is a new learning experience.