The Verdict

I and my mom went to the neurologist today to obtain the results of the multiple exams she had to go through. The verdict came like a sledgehammer:

 'The lombal ponction fluid was not normal. The presence of anormal protein was detected. This and the results of the memory tests and all the other circumstances lead to the conclusion that she has Alzheimer's disease".

Now, this didn't come out of the blue. The aggravation of my mom's symptoms let little hope left for any positive diagnostic. Nevertheless, it knocked me down. While my mom sat there frozen, I melted down in tears. I cried and said that I was not able to face this. 

The doc stayed calm and said  that what needed to be done now is to get some help and support. Yeah, as if this was available.

I am fucking alone with this nightmare.

He also made a prescription for some Alzheimers medicine that does reduce a bit the symptoms. "but it's not funded by social security," he said. I know. It was recently taken out out of refunding eligibility because it is, citation :  "a comfort medicine" 

Holy fucking shit. The damn asshole who made that decision obviously has no clue what it is like to depend on even the tiniest relief.

I said to prescribe it anyway. We'd pay it.

My mom took it all with relative calm. She is shattered too, I know, it but it is hard to tell to which point she is really aware of the tragedy. I try my best not to show my grief too much. But it is incredibly hard, when all what you want to do is to cry and have someone to talk out  all your grief.

Berck

Today was my arrival day at Berck sur Mer. I am at the hospitals Hotel for tonight and tomorrow I will enter the clinic. My initial thought was that the surgery would happen tomorrow, but it will actually take place Wednesday morning.

What a strange yet fascinating world here. Sand in the streets that are in the shadow of huge dunes which face the sea. The clinic has the look of a 19th century hotel for treatment purposes. For sure a very interesting place.

In the past days, I was busier looking after my mom's needs than preparing myself for this trip and the upcoming surgery. The most important thing was to ensure that she has all the necessary information and can find it whenever she needs to. She was becoming increasingly anxious, but I hoped I could manage it all in a way that nothing would trigger any stress for her.

On the road to Berck I sent her Whatsupp messages every hour. First I thought that all is okay, that she can stand the stress this way, but well - no.
 At some point she started to ask where I am, half an hour after my last message and then asked "when I return home". Needless to say that that  really knocked down. 

If it starts right away when I am not even arrived at  the clinic, how will things evolve when I am really under surgery? I am afraid that she will not be able to withstand the stress. But What can I do?  I know that it was probably wrong to let her alone at all. There is an aide coming for two hours oin tuesday, but surgery is on Wednesday and this day she will be alone all day long.
I feel awful guilty

At the "Memory Center"

In January of this year, my mom and I finally made the decision to visit our house doctor to discuss her increasing memory loss. The doctor then prescribed her a visit to some psychologists for elderly people and an IRM brain scan.

The psychologist suggested that the reason was probably because my mother had to suppress so many negative memories that the good ones were also lost.

After the Brain scan, I was given the scan images and a lengthy list of observations, most of which were difficult to comprehend.

I returned these results to the doctor, but she claimed that everything was normal at my mothers age. I insisted that she may at least have a look at the Scans and what was said there, but the doc refused.

So I was pretty much at the starting point again.  It was incredibly frustrating because it's not easy to get your mother out of the house for this terrifying exam. 

And for what?  I had expected the doctor to finally send her to a memory center where a genuine neurologist would perform a regular memory test.

My mom's symptoms worsened in the weeks that followed. So I undertook a new attempt  and wrote an email directly to the memory center of Epinal, explaining why I don't have a prescription but why I think we would need a visit anyway and badly. I claimed our right for the famous "second opinion" regarding that IRM Scan. Not that there really was a first one anyway.

They responded the next day and gave us an appointment for today, October 10.

I quickly became aware that this was incredibly quick, because there are people who wait for 6 months or more.

So today we were at that center. Obviously, it was a very emotional experience. While waiting in the anteroom, we saw two couples, each of whom was a not-so-young man and his elderly parent. 

A son handed the insurance card to his old mother, telling her to put it back in her purse which, visibly, was a difficult task for her, because she didn't quite remember where to put it. The task was accomplished, but she asked her son five minutes later if he knew where the card was and if he still had it. He tried to stay calm and explained her that she stored it in her purse, five minutes ago. As he turned his head and stared into the void, with the pain and sadness in his eyes, my heart was torn apart. Since I've experienced the same kind of situation so often, I could sense his endless desperation very well.

Then I got called by the neurologist's assistant who wanted to talk with me in a separate. It felt good to finally be able to tell my story, as she asked me to tell how it all began from my perspective.

I asked her to tell the team to be gentle with my mom and  - never ever - pronounce the  A-Word. Because my mom needs hope to stay alive. At any cost.

The Neurologist finally took us both in his cabinet. There He examined the IRM scan. He says that there is some damage done typically by high blood pressure. My mom is under treatment for that, but from now on we will have to survey her pressure a lot closer.  He said that the brain damages are clearly there, but not necessarily indicate the A-illness. (He called it Memory-disease, according to my wish ...)

He said, that he will make an extended memory test for a whole morning at the hospital. He wants also to examine my moms sleep in a sleeping-lab. He will order a lumbar function to analyze liquids and detect proteins that are typical for memory illness, if present.

Farther, I will get more help, and appointments with a psychologist.

So FINALLY we had a Neurologist looking at those scans and making intense exams. It really took a lot of effort to get there. 

I wish us helpers were not so alone on this dark path.

Vitry le François

 I'm feeling slighly better now, probably because I have to focus on the next project : The Comic Festival of Vitry le François. I start off  tomorrow and will be hom by sunday night.
I guess Vitry will distract me a bit from sadness. Things have to go on.  The Festival "Bulles en Champagne" has allways ben a very pleasant one, lots of visitors and nice meets !

My mom will be alone for "only" 2 complete days, that's not too bad. Of course, bad things can happen any time; yesterday she fell down on the bathroom floor. I am not sure if she would have been able to get up If I wouldn't have been around to help her. Its the second time in a few days she had this sort of accident, so I guess we are entering in the "elderly people who contstantly fall down" era.

I managed to get an appointment for her at the Neurological service on October 10 . Given that most people have to wait up to 6 months or even longer, I guess I was very lucky.

There I can finally have a real neurologue looking at her Brain-scan and making a regular memory test. Because what we need now is something like a real diagnosis. Without that, no help whatsoever can be obtained.

I made tho photo recently from my window: