Knowledge is Power
It’s been, what, not quite four months since I had to move in with my mom, who has dementia. In the past three to four days, she has been lucid. Greeting me with a smile on her face, even allowing me to fix her lunch. At this point I was thinking, it’s not going to be as bad as I had anticipated.
I called my Power of Attorney (POA) sister to tell her how pleasant the past three to four days had been. She told me that mom would not need much supervision and that it would be fun to stay with mom in her time of need.
Fast-forward to the next week. I went downstairs and there was mom, sitting in the living room alone. That was not strange, but it was dark. She did not bother to turn on the lamp, which was right next to her. I greeted mom as I reached the bottom of the stairs. She looked up with a glazed look in her eyes. She seemed to be in another world. At first, she said nothing. I repeated my greeting.
“Are you okay mom?” She simply got up to go to the window and began adjusting the curtains.
“Look at all of those people?” said mom. “I wonder where they are going?”
“Have you had breakfast yet? I said. I went to hug mom and she shrugged me off with her shoulder.
“Why are you even here, said mom. I have to go cook something for breakfast”, she continued as she got up to go to the kitchen.
“But you don’t cook anymore mom. Remember you told us that you no longer wanted to cook,” I said.
My mom then turned back to look at me and told me that she never said any such thing. At that point, I am thinking to myself, she is not okay. I jumped on the computer to look up information on people with dementia and how best to help them. I purchased “The 36-Hour Day” by Nancy L. Mace, MA and Peter V. Rabins, MD, MPH. This book was a great help to better understanding what lay ahead for me and my sisters. The authors gave real world examples of what to expect, explaining how to set up durable power of attorney, guardianship, hospice care, and palliative care when the time comes. She had people who were caring for their loved ones, tell their story of what it meant to live with those who have dementia.
After reading the book, it occurred to me that mom was showing signs of dementia as early as a year or two ago. I can recall her leaving food out to spoil and later trying to eat it. Sometimes we would come to visit and realize that she had bills that were unopened. They would be stacked up on the bedside table.
I decided it was time to rally the troops. Have a sit-down with my sisters. The sister who would ultimately become POA was not convinced that mom had dementia or at least that she had not reached a stage where she required professional help.
According to Janis King, author of “Are You Prepared?”, which chronicles her journey of living with her father who was diagnosed with Alzheimer’s disease:
“Out of the approximately 5.5 million people who have Alzheimer’s disease, African Americans may be at especially high risk for developing the disease due to the high risk of diabetes and hypertension…”
Before now, I had no idea that the Alzheimer’s numbers for African Americans was so high. Knowing about this statistic stressed the need for a family meeting. Gathering everyone together for the meeting itself was a challenge since my oldest sister lived in Pittsburgh, CA, the youngest sister had a job that entailed frequent out-of-town trips, and yet another younger sister, who was dealing with cancer herself. Fortunately, at the time of organizing the meeting, we caught everybody at the right time.
My youngest sister, who initially had POA over my mom’s affairs started us off by telling us how much time and work she had put into caring for mom before I ever came to help mom. I had no idea that she had shouldered the burden of checking everyday to see that my mom had a hot meal three times a day, that her she was clean, that the yard work was done, and that she was safe. Nobody had said a word to me about it. It was the first time I was made aware of her predicament.
The sister who now had POA told us that she thought that mom would be okay; that I may have been exaggerating the symptoms I had witnessed myself. We then went on to discuss whether we should have mom execute a Do Not Resuscitate (DNR) document for future reference while she was still somewhat cognizant of what was happening to her. Again, POA sister did not think things had progressed far enough for such a move. She thought it was too drastic. We decided that we would mull over the idea of drawing up the DNR papers and of contacting an agency to find a caregiver for my mom.
As far as I was concerned, mom desperately needed in-home care. We were not yet sure if we needed long-term care for mom or perhaps someone who could be a personal assistant. My mom was so independent, I could not imagine her accepting help for personal hygiene.
Six months into my sojourn with my mom, the caregiver comes three days a week, since POA sister decided she did not need a full five days of care.
At least after reading “The 36-Hour Day” I was not shocked when my mom started hiding cereal behind the living room couch or when she would take food out of the refrigerator and hide it under the dining room table. The worst thing was when she began “hiding” personal items of ours, such as a book that had been left out on the coffee table. If we left a glass of soda or milk on the table, if we turned our back on it for five minutes or more, it would not be there when we returned. If I did not beat mom to the mailbox, she would take the mail and put it away somewhere. I realized that it did no good to ask her about where she had put these items. She would give a blank stare and ask: “What are you talking about? This is my house. I can do whatever I want.”
Most mornings I would wake up and remember where I was. It was still so difficult to believe that my once vibrant, funny mom could have come to such a state. A times I would stop to think how long I had been here and how much longer would it be before things changed. Then I would have my own little pity party. I had to give up all my household goods to come here. My furniture from my two bed-room apartment, gone. The new office chair that I had purchased only a month before I came to live with mom, gone. Most of the clothes I had in my closet and those of my daughters, gone. Then I immediately thought of the many blessings God has bestowed upon me. At 62, although my blood pressure was a bit high, I was in relatively good health, I still had a roof over my head, even though it was not my home, and unlike my poor mom, I still had my sanity. I stopped myself at that moment to thank God for being able to come in and help my mom in her time of need. I had heard so many stories of elder abuse, it calmed me to know that that was not a worry when it came to my mom. I gave praises to the good Lord above knowing that my mom was able to live at home and tend her beloved flower garden.
Speaking of the devil, I was jolted out of my state of thankfulness when I heard my mom shouting, “Where are my glasses? Someone has stolen my glasses! They were here earlier and now they are gone!”
“Can I help you find them? I replied.
“I know you’ve done something with them. Where are they? Said my mom.