Alzheimer’s Patient “Wakes Up”
Those of you who read this blog know my mother has Alzheimer’s Disease. We began to notice problems almost 10 years ago, and my father, sisters and I have suffered along side her.
Last February, I watched an episode of Grey’s Anatomy, when Ellis Grey, the mother of the main character, “woke up” from her Alzheimer’s Disease for a day. The episode was disconcerting, but hopeful, but frustrating, and raised the question of whether that was really possible.
At the time I could find no references online that spoke to this possibility. I blogged about it. Read the post here.
A few days ago, I heard from Loretta, whose mother had the same experience as Ellis Grey did. Her mother was lucid for hours and hours, talked to all their family members, couldn’t believe she had been “out” for years, got all caught up on family happenings…. The family all witnessed the phenomenon — and they video taped it.
I was flabbergasted by Loretta’s email! I believe every word of it. And Loretta and I have exchanged several more emails since then. She even gave me permission to share it with all of you.
And of course, dozens of questions popped into my head…. One of the biggest was — does this happen more frequently than we realize? Are there others who have had this experience, but when they ask the professionals about it, they are dismissed?
And more importantly — can we learn anything about this disease from those who do “wake up” even if it’s just for a short period of time? Does anyone track it? Have others video taped it?
Loretta tells me that the caregivers at her mother’s assisted living center have witnessed it before with other patients. To those who care for Alzheimer’s patients, this doesn’t seem at all unusual.
But why are there no studies? Why isn’t it part of the literature?
Yes — I do know many of the questions we loved ones must face. If I could have my mother back for just a day, knowing she would later retreat to her Alzheimer’s fog, would I want her to be lucid again? Would it be heartbreaking? Or joyful? What would we talk about? Would she be sad or angry? At the end, would we be sad or angry — or simply thrilled that we enjoyed some “bonus” time with her that had been unexpected?
But all of those questions, in my opinion, pale in comparison to what we could learn — for future sufferers. Does this only occur a few years into the disease? Can we figure out what triggers the awakening? Can we draw conclusions about the biology of it? Does it give us some clues as to where the memories have gone, if they have gone anywhere? And of course, dozens more.
What if we began comparing notes? What if we started tracking the phenomenon?
There are so many possibilities for learning about the disease if we can just corral the experiences!
So I have built a page on this blog where those of you readers who have had experiences, or have questions, can begin to share your thoughts. If it outgrows this blog, then perhaps I’ll start another one.
Link to the Alzheimer’s Reports page here — which also includes Loretta’s email to me.
If you know of other resources about this particular phenomenon, please let me know. (Not just Alzheimer’s resources in general — it’s a huge topic, with excellent resources, and one more won’t contribute to the discussion.) You’ll find contact information at Alzheimer’s Reports.
Talk about patient advocacy!! The strength and purpose of individuals who care — let’s see what we can do!
| ……………… | |
 |
Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tipsOr link here to empower yourself at EveryPatientsAdvocate.com |
| ……………… |
I have seen it too. I dont have any family member with ALZ but my ex wife worked at a retirement home in Akron, Ohio. She reported to me and has shown me a few cases where these people “wake up” from this terrible darkness in their mind and for short bursts of time they know who they are and converse perfectly normal.
Last week on an Italian TV Network they broadcasted the episode “Wishin’ and Hopin’ ” from the serial Grey’s Anatomy. I watched it and I was deeply moved from what happened to Ellis Grey, the mother of the main character. Afterwards I surfed the Net for answers or comments and the only serious notes I could find about this issue was on your blog.
The fact is that ten years ago my mother was diagnosed with Senile Dementia after two episodes of Ischemia and then she kept on getting worse over the years and now she can barely walk (with help), she can’t take care of herself, she doesn’t speak and she even doesn’t recognise me or my brother and sister at times. Two years ago she was taken to the hospital due to a Renal Colic and there, because she was not able to eat or drink and her pressure was collapsing, they put her on a drip filled with Saline solution and Amino acids. After the second bottle of the phleboclysis she started to speak as she used to do when she wasn’t ill and she remembered every detail of her life before getting the disease. She started to complain about my clothes (I always ride my bicycle to move in town so I can’t wear a suit…) and about my sister’s hair like she always used to do in the past! We didn’t tell her about her mental condition but just about the reason because she was in a hospital. We didn’t even tell her my father died two years before since why give her such a bad new if she was going to be like that just for a while. As a matter of fact the day after she was again lost in her “fog” (a very evocative word you Ms. Torrey used in your post). The doctors said this strange “phenomenon” was due to the stress condition she was experiencing and they didn’t seem to bother too much about it.
After that we just thought we was given a “gift” like they tell to Meredith Grey in the episode, but as opposed to her we were very happy to have met the same mother we knew ten years ago.
Last summer my mother was again in a critical condition because of the very hot temperatures and of the dehydration (she also suffers from Hiatal Hernia and so she can drink liquids only with thickeners). The doctors decided to put her on the drip but keeping her in her house. After the fifth bottle of dextrose solution again she started to speak in a loud voice and this time she wanted to wake up, to take a bus and to go to pay a visit to her close friends (most of them unfortunately already dead during her disease period). This time she was very anxious and hyperactive, like suddendly a waterfall of memories had reached her brain all at the same time. She remembered names and dates and we showed her a lot of pictures and she recognised every person. She didn’t sleep that night and the following day she suddenly switched off again.
About one month ago the third and last episode so far. This time no medication applied. She woke up in the morning and called the person who takes care of her and she started to speak with a very loud voice. She was really happy to see my nephew (he is twelve) like she had not seen him before. She was very happy to see me too and she kept on asking me about people she used to meet. She asked again about my father and when I told her he was still at work she seemed quite convinced of the explanation. This time I had my cell phone so I taped her while she was talking to me and she was quite surprised to see how small are the phones these days. After a few hours, she was gone again.
You can now imagine my feelings about the show I have seen on TV. Everything depicted on the episode was just invented? I know this serial doesn’t have any scientific basis, but wouldn”t be possible that the authors were inspired by something they read or heard. If so, why is that difficult to find some examples in the medical literature? Why do the doctors who saw my mother keep on considering these facts are “bizzare”, “strange” and therefore not important to investigate on?
I thank Ms. Torrey for all her comments even the emotional ones, most of them I quite share with her and I thank her to have given me on this blog the opportunity to tell my story.
Francesco Varotto
Padua, Italy
Cher François,
Je suis très touchée par votre histoire et désolée pour votre maman… J’ai des amies et connaissances autour de moi qui vivent la même chose que vous… Je sais donc que c’est très difficile pour la famille et je vous souhaite beaucoup de courage…
Pourtant, j’ai l’impression que c’est grâce à Elle, ou plutôt grâce à votre article, que je vous retrouve peut-être… Est-vous le Francesco Varotto que j’ai connu dans l’ex Yougoslavie à Rijeka, en 1969 ? Vous étiez artiste photographe ? mari de Leda, et père de Ilio (environ 7 ans) que j’ai peut-être retrouvé ce soir aussi sur facebook et à qui je viens d’écrire un message…
Je serais si heureuse d’avoir de vos nouvelles… Nous parlons encore de vous, de temps à autre, Chantal et moi, j’ai encore vos lettres… Comment allez-vous Leda et vous ?
Je suis désolée aussi pour votre papa… Votre message sur ce site date de 2007… J’espère que vous aurez quand même ce message ou qu’on vous le transmettra ainsi que mon email…
A bientôt peut-être
Christiane/Christie