“The uncertainty of the future is torture for me, but at least I know that I have the right documents in place to ensure she is safe and well cared for while we take this uncharted journey together.”
By Suzanne Demarest
Jim normally writes the columns that appear in this space, but I have worked for him for more than six years, and he asked me to write this month’s column. Why? Because I’ve worked with aging and declining people for many years, and now my own mother, who lives with me full time, is rapidly entering the realm of dementia. It’s scary. Very scary. And nothing can prepare you for the feeling of loss and lack of control that comes with their deterioration. I helped Jim host several dementia forums with expert speakers, and some of the information presented has helped me immensely, but even that wasn’t enough to prepare me for dealing with it myself in my own home.
The first sign was a change in her ability to process information. I noticed she did not remember things I had told her and that she just did not seem to be mentally tracking, but I chalked that up to stress surrounding a relocation across the country.
Next, she began stumbling through her sentences and having a very hard time finding the right words to use while forming her thoughts; around this time, she was having some dental work done and she kept blaming this on having a missing tooth, but I sadly suspected it was something more. She also began repeating herself multiple times within the same conversation; thankfully, I remembered from the dementia forums that it is important to remain patient and stay calm rather than succumbing to frustration and exacerbating the situation.
She was also occasionally very angry and emotionally volatile. It was very hard not to be hurt when this happened. She threw a wooden spoon at me one day when she was aggravated. Then, there was a time at the doctor’s office I mentioned to her that I wanted to tell the doctor about her difficulty remembering things we had spoken about, and she replied “Well, have you ever thought maybe I just don’t care enough about what you are saying to remember it?” Wow. This was not my mother. Where had my mother gone?
My mother was always very proud of her independence and her ability to handle her finances and real estate transactions. Within a year of moving, it became apparent she could no longer remember to pay her bills, fill out a check or do the math required to calculate making a deposit at the bank and keeping some cash out, but she was very hostile and defensive when I offered my assistance. It was when she stopped being angry about me stepping in to help I realized things had really changed. Thankfully, she had executed a Durable Power of Attorney and Advance Health Care Directive so I can act on her behalf to take care of her finances and medical needs. This allows me to pay her bills, handle her banking and I have even used the Durable Power of Attorney to sell a condo she owned in Utah. I make all of her medical appointments, fill her prescriptions and advocate for her care.
Now, almost three years later, she relies on me to do all of her shopping and cook most of her food. She does not remember how to make scrambled eggs, let alone a complex meal. I do her laundry because she can’t operate the washer and dryer. She is becoming incontinent, and her posture is stooped. She spends a lot of time sleeping. She tells me long stories about things that happened when she was young but has stopped caring much about the here and now. I don’t know what she will be like next week, next month or next year, but I do know it is only a matter of time before we will have to make some hard decisions about her care and well-being. The uncertainty of the future is torture for me, but at least I know that I have the right documents in place to ensure she is safe and well cared for while we take this uncharted journey together.
Suzanne Demarest graduated from the University of California, Santa Cruz with a bachelor of fine arts. Her career began in high-tech, but she has worked in business development, marketing, and property management. Suzanne joined the team at The Law Offices of James A. Ward in 2015. She now thrives while working remotely for Jim from Cape Cod, Mass.
