By: Mike Guglielmo
My wife’s journey started quietly and without warning. Her journey was going to take us down many different twists and turns filled with many different emotions. She was a remarkable wife, mother, grandmother, sister, aunt, and friend. She was an avid reader, loved to visit with family and friends, and she loved to cook and play with her grandkids. If I had a question or didn’t know how to spell a word, I would call her to make sure I had it right. She was my Google before there was Google. If someone needed help she would be the first one to volunteer and the last one to leave. She always worried about everyone else, and what they needed. She wanted to make a difference.
She started to have brain fog, as she called it, which she attributed to something in her diet. At work, she would be helping a customer and she would forget what she was doing for a minute, and then she would remember it again She was a Reiki Master-Teacher and she started to have trouble putting her study books together. She would always get it done, but it took her a lot of extra time. She had trouble with balancing her checkbook. For a number of years, she dealt with these changes silently…not sharing her struggles with anyone. As things became more difficult, she went to doctors, therapists, physiatrists, and nutritionists leaving no stone unturned. However, she continued to have issues, and they couldn’t figure out what the cause was.
Then in November 2011 on the way to work, she was having difficulty following the road and drove into on-coming traffic. Luckily, she did not get into an accident. When she got to work, her boss called a doctor and they advised her to go to the nearest emergency room. Her boss called me and I met them both at the hospital. They thought that maybe she had a stroke. They did a CT scan and everything was negative. She was sent home and they advised her to see her primary care doctor, a psychiatrist and a neurologist. She never drove again.
We continued to meet with doctors and they would tell her that she was depressed. She would argue that she definitely was not depressed. We finally went to visit the Rush Memory Clinic. After reviewing her medical history, more testing, and CT scans – we had a consultation with a doctor. That is when we learned that my wife had posterior cortical atrophy, a rare variant of Alzheimer’s disease that is typically early onset. My wife said, “Thank You! Finally, somebody told me what I have.” I sat next to her devastated by the news.
She was happy to know what was wrong. She was going to be positive and handle it like everything else she did: with a positive attitude. She had faith in God and she knew that everything would be in his hands. She would pray to God every day, accepting whatever was in front of her. She never complained. I was the one complaining… why her, why couldn’t it be me. She always took excellent care of herself, it didn’t make sense.
At the time, her parents lived with us. They would stay with Deb while I was working, and if they went out they would take her with them. She was with someone all the time, except when she would walk her dog, Angel. I found out from the neighbors that she would sometimes get lost and they would bring her home. She couldn’t do much for herself, so I had decided to quit working in January of 2015. I look back at that time, and I wish I had done it sooner. Being able to help her through her journey was the most rewarding time of my life. I think she really enjoyed having me there all the time.
She had issues getting dressed and with general overall hygiene. As time went on, she couldn’t read or write. One of the saddest things she told me was that she wasn’t able to play with her grandkids. Sometimes she would think I was her Dad. She was still eating and sleeping well. When she went to bed, she would sleep for 9 to 10 hours. However, one night she went to bed with her dog as usual and a couple of hours later her dog came downstairs. I knew something was wrong, so I went up and found her at the top of the stairs. She was not sure what to do, I put her back to bed and she went to sleep for the night. That’s was when I realized, we had to move and it worked out that I found a place in the same building as my daughter.
Her verbal communication became less and less; she couldn’t speak in complete sentences. Our daughter got married in 2015 and the night before the service we had dinner and everybody told a story about the newlyweds. Deb wanted to say something and I was not sure she could do it; however, to my amazement, she spoke beautifully about both of them. I, on the other hand, could not speak at all and just cried.
Early on, I decided Deb would stay home as long as I was able to care for her. We would stay busy with yoga and meditation four days a week. She would get a massage once a week, and sometimes she would say that she didn’t want to go. But I would take her anyway and then she would really enjoy it. If she didn’t, I would take her back home. We would go to the City once a week to have lunch with Alison and Jake and go to Cathy and Mario’s once a week for lunch. She really enjoyed getting out. She loved to listen to music and sing. Even after she couldn’t communicate anymore she could still sing songs, especially with my sister. As her journey continued, crowds and noise would upset her. Usually, if she was upset, I would lay down with her and hold her in my arms and she would normally calm down.
She continued to go to the doctors yearly for her physical and periodically to the memory clinic. Her overall health was very good. The last visit to the Memory Clinic she cried because she couldn’t answer any questions. She was on a slow, continuous decline. She had a great personality, funny with a quick wit, and over time this continued to change. However, at times we would be at someone’s house having a conversation and her quick wit would come out to our surprise, making us aware that she still was with us.
She had a seizure and was rushed to the hospital. However they found nothing had changed, so they sent her home. After the seizure, she started to decline more rapidly; sometimes she couldn’t walk. She was still sleeping well at night and spent most of the day in her chair listening to music.
Her spirit never changed. Her quick wit would show up every now and then, and it would make all of us smile. As she continued to decline, I focused on trying to make her comfortable. Finally, we had to stop leaving the house.
It’s really hard to say goodbye. She died at home with her family by her side. I will end with one of the last love notes she wrote to me: “So many memories, and so many years ahead of us still!”
I know what she wants me to do now is to help others. I will do whatever I can to help find a cure for Alzheimer’s.