I called my friend Kay recently to wish her a very happy 86th birthday—and to discretely check on the effectiveness of the dementia medication I encouraged her to take after she finally agreed to see a dementia specialist six months ago. After years of trying to persuade her, I was surprised when she finally consented, saying she was noticing that her memory was really slipping and it was scaring her.
During our hour-long conversation (testing) as we covered politics, religion and the meaning of life, I was delighted to hear Kay sounding much clearer than she'd been in quite a while—indicating the medication was indeed working. But then… suddenly she threw in a zinger. "Oh Jacqueline, I was so excited when we got your message on the answering machine yesterday that you are writing another book—is it a sequel to "Elder Rage"?
"Ummm, no Kay, I didn't leave a message."
"Yes, you most certainly did! You said you'd call today to wish me a happy birthday and that you'd tell me all about your new book."
Darn, and we were doing so well. I finally convinced her that she probably just had a vivid dream as I always call on her birthday, but she started to cry that she feared she was losing her mind. I felt terrible, as maybe I should have just agreed, but then I'd have to lie about writing a new book. I didn't want to make things worse by telling her she was having delusional thinking (false beliefs which occur with dementia), so I just made light of how our minds can play tricks on us.
Then she whispered that she was also having episodes of déjà vu. "Jacqueline, my family takes me out to places like a new restaurant, and I just feel so strongly that I have already been there, even though they assure me that I haven't. Do you think that déjà vu is part of this dementia thing I have too?"
"Ohhh, maybe, but I wouldn't worry about déjà vu and vivid dreams—those types of things start to happen to most of us as we get a little older. Just remember to rely on what your family tells you as the truth—and then just laugh about it with them and enjoy what you are doing, okay?"
I rushed to the computer to research dementia, dreams and déjà vu and found that since dreams are stored in our long-term memory, if a person with dementia and short-term memory loss sees something that reminds them of something from a dream, they can think they have experienced it in real life and have that eerie feeling of déjà vu.
I also contacted Dr. Rodman Shankle, MS, MD, a highly respected neurologist specializing in dementia who contributed an extensive addendum to "Elder Rage". He explained it this way:
"With regard to déjà vu: What happens is that as the short-term and long-term memories start to disappear, the memories that remain are perceived as the patient's current reality. So, say you are 75 years old, but demented to the point where you think it is 1959—you would perceive yourself to be only 25 years old. And even though your brother would also be in his seventies, he would appear more like your father to you, since you'd believe that you and your brother are only in your twenties. This is why as dementia progresses, patients often begin to perceive their own children as their parents."
People With Alzheimer's Sometimes Live in the Past
When I was caring for my parents, both of whom had Alzheimer's, I saw first hand that people who suffer from this disease often live in the past, and confuse the past with the present. One day my sweet mother looked right at me and asked for the first time, "Honey, where's your little sister, Jackie?"
Somehow, as a lump instantly clogged my throat and my heart was breaking in two, I had the instinct to say, "Um, well, how old is Jackie now?"
"I think she's about ten."
"Ohhh, you know what? She's staying with Aunt Agatha and Uncle Roy, up at the Boulder for the summer. (I drew from a familiar story hoping it would help.) She called this morning to say what a wonderful time they are having and that she caught a big fish! She said to give you a big hug and kiss when you woke up today!"
As I leaned over to deliver the message, barely holding back my tears, she smiled so wide and sighed with such deep relief that her little girl was, indeed, in the safest of hands. I can't even imagine her terror if I'd said she didn't have a little girl, when in her deepest reality she did. It was so interesting though, as the next day she was back to knowing me as her only (adult) daughter… and I was careful not to mention anything about fish! The profound experience made me realize how important it is for families to know how to react to questions like these to prevent so much unnecessary heartache.
I also started asking my parents how old they were as oftentimes they said they were much younger than their 79 and 84 years. Then I realized why dementia patients don't recognize themselves in the mirror so often—they're expecting to see a much younger person! Once I knew what age and reality my parents were living in, it was much easier to just join them there and go with the flow.
Then one time it was so touching for me when the caregiver I hired to live with my parents so I could fly home and take a break, "Amazing Ariana", went into my parents' room one morning to get them up for Adult Day Care. My mother awoke and asked in a panic, "Where's my baby? I just gave birth to a baby girl here in the bed."
I had trained Ariana to be prepared for these types of things and was so proud of her when she said, "Ohhh, well… what's the baby's name?"
"Jackie, my baby's name is Jackie—where is she?"
My father heard the whole thing and as he rolled over to cuddle Mom he said softly, "Nooo honey, you didn't have a baby in the bed. With all our problems, a baby is the last thing we need right now. You must have just had a vivid dream sweetheart. We already have a daughter named Jackie--that must be what you were thinking."
Soon after… it was Dad's turn when one morning at 4:00 am he got up and started frantically knocking on Ariana's bedroom door. "Come on, hurry up, get up! The new ship is coming into dry dock early today, so we have to get in to the yard and take care of it!"
Ariana knew exactly what to do. As she put her arm around him and walked him back to his bed she said, "Ohhh, you know what? The yard called and said they got that ship docked in safe and sound already—it's all been taken care of for you. They said you trained them so well that you don't even have to go to work anymore, so you get to stay home and go back to sleep—isn't that great?"
Ariana and I marveled that so many times when Mom had a demented or déjà vu episode, Dad was clear as a bell. And then when he had it, she was sharp as a tack. (And they were both totally normal whenever we went to the doctor!) It actually became quite comical, as each time there was an incident, the "clear" one would sadly shake their head at us, sorrowfully indicating that it was such a shame that the other one was really starting to lose it.
Then one afternoon… the shuttle brought my parents home from Adult Day Care and as we helped them inside, Dad proudly announced that he had landed a part-time job. Mom nodded with such excitement and when we asked more about it, Dad grinned from ear-to-ear that he was going to be in charge of taking care of Clark Gable's horses! Mom confirmed the news and added with delight, "Yes, isn't it wonderful! And ohhh, we have to go shopping for hay!"
Ariana and I just stood there dumbfounded and could not believe it—somehow they were both in the same little demented episode—at the same time!