The Beginning of Ed's Long Journey Downward
Ed was my beloved Romanian life partner of 30 years. Today, my mind flashed back to the first months of 2000, when his dementia began to become more prominent. He had been exhibiting mild memory problems for a few years. These consisted primarily in forgetting where he put things, a frequent inability to remember proper names, forgetting other words, etc. Things we all do from time to time. Then the memory problems and confusion began to worsen.
For example, I did all of his grocery shopping. When I suggested some items to buy for him at Krogers, he didn't recognize several of his very favorite foods. He didn't even remember Starbucks, which was the only coffee he had used for years.
I mentioned to him that he should put the coffee in the freezer (as he always did) and he asked me where the freezer was. When I told him it was in the kitchen, he didn't remember what a kitchen was.
I said, "You know, where your stove is."
"My stove? What is a stove? Do I have a stove?"
I continued, "Yes, where you cook your food." That didn't help.
He called me back a little later. He said that he had found his kitchen, but that there were only clothes and shoes in it.
The Continuation of Ed's Decline
Beginning in June of 2005, I kept detailed records of Ed's continuing decline. Some of the entries are given below. It was just after he had moved to a new apartment, and he declined rapidly.
June 1: Ed has always taken great pride in his appearance, but came to the door to receive expected guests when he did not have his dentures in. The most amazing thing was that he didn't even seem to care.
June 1: He removed his eyeglasses to take some eye drops and then took an hour to find his glasses again. Couldn't remember the word "bathroom." Referred to his phone as "the computer." Referred to his watch as "glasses."
June 3: Couldn't remember how to operate the TV.
June 5: Despite living in his new apartment almost three weeks, he still sometimes has trouble finding specific rooms and has to wander around until he runs into them.
June 10: Called me to confirm his phone number, which has been the same for 40 years.
June 11: At 2:30 in the afternoon, he thought it was almost time to get his newspaper, which arrives at 3:00 in the morning. Even after I explained this, he was still confused and thought it was the middle of the night instead of mid-afternoon.
June 12: Couldn't remember where he keeps his clothes.
June 15: Was terribly distressed because he couldn't find his pants, which were on the bed right beside him.
These types of symptoms continued, and many new ones that were worse occurred throughout the rest of June and the months of July and August.
More Decline During Ed's First Month at the Alois Alzheimer Center
In 2005 Ed moved to the Alois Alzheimer Center. During his first month there, he declined rapidly. When he first moved there he was able and very much interested in doing the following, all of which had been important parts of his life pre-Alois: Call me on the phone, watch political talk shows and read the New York Times from front to back every day.
Before the month was up, his phone calls to me had decreased and then finally stopped. Then, not only did he stop watching his beloved political talk shows, he forgot how to operate the TV and finally forgot that he even had a TV. Shortly after that he lost interest in reading the newspaper and started tearing it into small pieces and using it to clean his table in the dining room.
When he first moved to the Center, he was irate because he was not allowed to have vodka and he was more irate that I would not buy it for him. He tried everything imaginable to get it. In fact, he actually called a cab once to come pick him up and take him to Krogers to buy it himself! By the end of the month he had forgotten all about vodka and I didn't ever hear another word about it.
Furthermore, when he first entered the Alois Center, he had insisted on having his entire library, consisting of eight bookshelves full of books in every imaginable language, moved into his room. By the end of the month, the facility needed to move him to a new unit where he would receive more care. At that time, I only moved one bookcase and he didn't know the difference. He never asked about the other books and didn't even show any interest in the ones I did move.
And it only got worse as time went by.
Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer's caregivers.