The Loss of Self, Alzheimer Disease in the Family – Volume 1

Blogging about health is really hard to do. Looking back, this journey began about 18 months ago. My mother, Joyce, started repeating herself a little. Nothing concerning at all as she was 81 at that time. She began a downhill slope and by October 2018, she had trouble remembering how to use her cell phone and began more repetitive questions and statements. I had been taking her to her doctor all during this time but no diagnosis was made.

Later in October 2018, she phoned me and wanted to know when my son, Amos, was coming to get his car. She said he had left it in her yard and she wanted it gone. She was a little irritated about that car being there. Amos gave his older car to mom after her original car had been borrowed by a neighbor and totaled in an accident (not the friend’s fault). Mom went through the title transfer and getting new tags, etc in August. By October she didn’t remember any of this. It took me two days to be able to get to her house, 2.5 hours away and during that time she phoned multiple times about that darn car. I scheduled another appointment with her doctor.

The earliest appointment was two weeks away. During that time she improved quite a bit and her memory was improving. She went from “that car isn’t mine” to “you say it’s my car” to “oh, that’s my car out there.” She was having a good day when we went to the doctor appointment but he asked some questions, performed an exam, and then scheduled several tests, including an MRI. They got us in 10 days later for the tests. The test results were unremarkable, diagnosis was “mild atrophy and small vessel white matter ischemic change.” While the diagnosis doesn’t look to bad, it can’t convey the loss of self my mother was experiencing.

Things progressed okay after the October episode. Mom could live alone, she could still drive, but she was still experiencing memory loss. In January 2019, I scheduled another appointment with her doctor. I was leaving on an extended trip in February and I wanted to make sure she was okay to leave, with my son checking in on her and with my calling her basically everyday while gone. The doctor found no significant changes and I was cleared to travel. In May my Mom didn’t know where I was or who I was traveling with. She asked every time I called, she asked if we flew out (we were RVing).

Mother’s younger sister died of dementia and heart disease on June 2. This seemed to send her in a tail spin. She spiraled hard and fast. Mom couldn’t travel to Michigan for the funeral so Amos took his laptop and arranged a live feed of the funeral on June 2, so mom could “be there.” It went well. By June 10th, mom didn’t remember that her sister had died and was very distraught. The earliest flight that I could get from Rapid City, South Dakota was on June 12th. When I got to her house she was in a bad way mentally. I scheduled another doctor appointment and she scored a 14 out of 28 on a cognitive test. She thought is was August 2001. This was a significant decline. Her physician told her she could not drive nor live alone. She forcefully said, “I’m not AFRAID to live alone.” He told her it wasn’t about being afraid, it was about safety. The doctor’s office scheduled an appointment with a neurological specialist in Raleigh, NC. The appointment was for July 12th.

In the time we had before the neurology appointment, I was living with mom and making sure her medicine was taken correctly and that she ate regular meals, even when she said she wasn’t hungry. She’s never hungry now but she will eat if you put it in front of her. She thinks I’m a good cook so that is a plus. One day I was getting a shower and when I got out, the front door was open and she was gone. I called and called to her and was in a mild panic. I finally found her pulling weeds from a flower bed and she was laughing because she didn’t answer me on purpose. It’s just the way her mind works now. She also forgot she couldn’t drive and I found her in the car backing out of the carport. She had another set of keys that she found. She hopped out of the car and said, “I wasn’t going anywhere!” Yet, she was. The other set of keys is under lock and key now also.

With all that I’m sharing, I have to say that we have laughed a lot, hugged each other and told each other of our love. Precious memories. Oh, and then there is the ice cream (premium brands) and the kettle chips. She loves them and will hoard a whole pint of Talenti ice cream and not let me have any. She wants kettle chips for lunch. Nothing else. Kettle chips. I don’t fight those battles, she can have a nutritious meal the next time. It makes her happy. Especially when she doesn’t let me have any of that precious ice cream.

We went to Raleigh Neurology on July 12th and saw Dr. Kenneth Carnes. I really liked his knowledge and manner. He was excellent with mom and gave her cognitive test in a normal (kind of) discussion. She thought it was 2013 that day. Before we left he diagnosed her with early onset Alzheimer Disease. He prescribed Aricept (donepezil hydrochloride) for her. It’s for memory and she takes it at night. It does help her sleep but I’ve not seen any memory improvements but sleep is good. This is the stage that most people get diagnosed but according to the Alzheimer group, early onset is stage 4. It can last months or years. Mom is 83 and her disease seems to be going at a good clip. She can’t live alone or drive, forever now. She seems to be okay and working her puzzle books. She will do this for hours. She doesn’t like to converse much but she does sometimes. It’s difficult to watch this happen.

Right now we are all adjusting to the living arrangement changes and acceptance of our new life. Mom and I call it “our new normal.” There are many decisions being made about living arrangements and processes. It will all fall into place. I plan to make memories with my mom and love her with all my heart. There are several resources available for us.

I’ll follow up as situations change or come up. We are striving to make the best of this life. It’s the only one we have. More later.

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