Welcome to our CaringBridge website. We are using it to keep family and friends updated without burdening the family with lots of phone calls etc., and to manage visits to Mary for her family, they encourage visits! Here is the letter that Thierry wrote to tell friends about Mary's illness. It is Mary's Story
May 25, 2020
Dear Friends and Neighbors,
I am afraid this is the kind of letter nobody ever wants to write or receive because it deeply affects people you love. Mary has been diagnosed with a rare and dreadful disease of the brain called “Fronto Temporal Degeneration”. (FTD). The last couple of months at home have been extremely difficult and it is time for us to let more people know. Obviously, with the lockdown we have not seen you as frequently as we usually do and we feel that it is now important to tell you how it all happened and where we go from here.
February 11 was the day our dog Soizic died. I had taken her to the vet in the morning and while I was at the airport for a meeting, I got a call telling me I should come back here and discuss with the vet. I tried to call Mary but could not reach her. Later in the afternoon I brought Soizic back home and finally heard from Mary, her phone had been turned off all day. She did not seem all that concerned about the dog and told me she still had another hour at work. That was obviously quite upsetting to me. In the meantime, Mary’s boss Julie called me and asked me if “everything was all right with Mary?”. We compared notes and realized we had observed the same things : she was forgetful, she was constantly looking for advice on very basic stuff like asking me what bowl to use for the salad, at work her sewing skills were not the same as before, she was now craving for sweets, she has this constant chatter going on and was getting strangely excited for no real reason. Julie was obviously emotional on the phone as she has known Mary for 20 years or more. I told her that I had been telling Mary for a while that she should get a checkup, but her answer was always “well it sucks getting old”. Finally, Mary gets home, does laundry, sets the table for dinner, she barely looks at Soizic and seemingly does not realize she is dying. 2 hours later Soizic passes away and while I am sobbing Mary barely sheds a tear. She does not know I am not just crying the loss of our 13 years old dog but also because I now realize there is something very wrong with her.
Next day I reach out to Mary’s doctor at Kaiser who gives us an appointment right away. Mary admits to some memory issues and having problems sleeping. The doctor asks if there was an event out of the ordinary in the past few months or a specific date when it started. I say, “well yes the car crash”. I explain to her that Mary had a crash back in September and she then says that maybe it was all because of TBA (Traumatic Brain Injury) that had been unnoticed. She suggests an MRI of the brain and before we leave the doctor says, “I hope this is what it is”. These words resonated with me for a long time. After the MRI the doctor called us and told Mary while I was trying to listen in that there was no trauma but that the brain showed “shrinking of the brain tissues”. She is referring her to Neurology. I am on Google.
We get an appointment with Neurology for late March but in the meantime Covid 19 hits in force and the appointment must be via video. The neurologist explains that the goal of the MRI is mostly to rule out any trauma, strokes, Parkinson’s, etc. there is none of that in Mary’s situation meaning the car accident is not the cause. The goal then is to see what the clinical evaluation and the history of the patient can tell in order to get a diagnosis. She would like to do a neuro psychological test but because of Covid 19 it is not possible now, great… She asks Mary a lot of questions, does a few memory tests and then explains to us that based on what she can see now there is a strong suggestion that this is FTD. She explains that FTD is a progressive disease of the brain, something to do with a protein destroying the good cells. It is different from Alzheimer on quite a few points. First, we all lose brain cells as we get older and for some of us it becomes some form of dementia when we are 80 or 90 and that is very sad but normal. On the other hand, “60 minutes” featured FTD a few years ago and called it “the cruelest disease for people under 60”. It affects them in their prime time in life, with careers, sometimes young children at home, individuals that are otherwise in excellent physical shape. Sounds a lot like Mary does not it.
So now you will ask “how is she?”. FTD has different variants, some are more about speech and some more about behavior. Her speech is fine although she suddenly speaks more French than English which is a bit ironic for me considering I have been trying to impose French at home for years with only relative success! It is a different story with behavior and personality, and we have two Mary, one at home and one outside. At home she can be a handful, I joke to her that her upcoming birthday is not 55 but 5 and 5 years old ! , she has this constant “vocalization” or chatter it is hard to explain unless you have heard it On the outside world she becomes very quiet, probably because she has a hard time following conversation that involve more than 2-3 people. The doctor says that she must constantly compensate and work so much harder with a damaged brain. “it is like asking a very unfit person to run a marathon every day “she goes. It does help to follow a constant routine with no surprise during the day. For us we go bike to the beach, or we walk. Mornings are usually ok but afternoons can be difficult because she sometimes gets quite restless. She is not aware of the disease and wonders why we see all these doctors. It is not denial but simply that she cannot grasp the problem. That is particularly frustrating for us because usually when someone is ill it does help to talk together about doctors, therapies, pains, medications. Here: nothing. All she says is “there is nothing wrong with me”.
Speaking of doctors, I found a neuro psychologist outside Kaiser who was willing to administer this test over 6 hours at her practice despite Covid 19. We got the result two weeks ago and the report was sent to the neurologist. It does confirm FTD. It is a very rare disease, there is no cure. Medications can only help for the symptoms. I am sure all of you will google and shed tears when you see how it inexorably progresses, no point for me to add anything. You have known her for a very long time, well there is now a new Mary, the outside shell is still the same for now, but we all have to get used to a new version of herself. I can tell you it is not easy to take, the toll on all of us is enormous and the kids thru all this have been nothing less than amazing. They never push back on her when she behaves a bit erratically. Elliott is always ready to take her on errands and of course make her laugh. Emma is coming back soon for the Summer and her mom is very much looking forward to that.
I have talked to the relatives in France, they are all traumatized and feel helpless. Mary’s sister who is retiring in August from her nursing career wants to come over as soon as travel resumes. I know that all of you will be asking how you can help. Well all I can ask you is to act normal with her. I am sorry to have to state the obvious but of course do not text her or tell her that you are sorry. Avoid discussing her in group texts in case she sees it. She is happy to see people just not too many at once. We are building a solid support system to help us for what is ahead. It is important to be one or two steps ahead of the disease as we/doctors/caregivers have no real idea of the speed of progression which varies from patient to patient. Right now, she is at a mild/moderate stage.
To think that a few months ago a lot of you had joined us to celebrate our 30 years in America… I feel blessed to have had Mary by my side all this time. The story is still ongoing, but it has taken a turn that nobody could predict. It is far from over, there will be sadness and tears but also lots of laughs to share with you. Life goes on, just different.
Thierry, Emma and Elliott
We appreciate your support and words of hope and encouragement. Thank you for visiting.