The Aching Void
Yesterday, after spending a long, a very long time walking on the beach, I came home and turned my Mac on... straight to Facebook. Trying to make up for loneliness, I guess.
A girl I am very fond of had posted an article from the NY Times I had tearfully read a few hours before... All about an odd form of dementia. Actually more a love story about an aching void.
Last Friday night, our friends Bernard and Yvette drove Popeye home from the station. It was very late because of train trouble on his way from Paris.
Since I no longer can drive when it gets dark, Popeye who was feeling quite desperate aboard a train stopped in the middle of nowhere called Bernard.
Why Bernard? Because whenever we have a problem in Brittany, who do we call? We call Bernard, of course.
Bernard and Yvette are very close friends ever since we moved to Les Tertres. Actually, before Bernard retired, he used to farm our fields... We used to laugh a lot about it! And... fight about it too!
Even though we differed on many environmental issues, we still got along well enough to be part of their extended family. Throughout the years, a game has been going on... I'd start talking about ecology and there he'd go ranting and raving (at me, of course). Then I’d laugh in his face. Got you!
Well, sometimes I was not joking at all. There were very serious issues at stake. Bernard is very bright and knows that they are serious... Then the fight would get a little bit more serious. At least it used to get serious.
Nowadays, there is no fight because you see, my friend Bernard is living with ‘an aching void’, his wife. And he loves his wife a lot, so much, so much.
‘Aching void’ may sound mean but those of you who have been sharing a lot of time with someone suffering from Alzheimer's disease will understand.
Yvette is my friend. She’ll be my friend until the end that is getting closer and closer. But spending time with her is more like facing ‘an aching void’ than a real person, the real person she used to be and will never be again.
She was diagnosed very late because her family doctor thought she was going through depression. (She was only 56 at the time.) And it took me a long time to realize what was happening because I was going through cancer #2 at the time. I did not spend a lot of time at Les Tertres for almost one year with going through surgery and chemo, etc.
We kept in touch by phone but it was like being a galaxy apart, really.
Yvette had been crying on the phone while she was telling me she was having troubles reading because her vision was deteriorating. She was complaining about being unable to take care of the farm accounts. The main point though seemed to be that she couldn’t see very well anymore.
Bernard was getting desperate because she obviously had no sight troubles but she was crying a lot and getting worse.
When chemo ended, I came home to Les Tertres.
I remember Yvette was smiling and quite happy again. She still had 'sight' problems but she had decided that she was probably suffering from MD, just like me. And since I had been able to recover partially, she was hoping she’d be just as strong and recover too.
By then, her family was getting terribly worried. She’d leave the farm and get lost while going shopping. Daily life was becoming definitely weird. Her doctor sent her to a specialist in Rennes. I can’t even say that it was too late because AD leaves you without hope. There is nothing to be done. Especially in places like Brittany, in a rural area.
When the family members learnt the dreadful news, some decided it couldn’t be true. Some did believe the neurologist and decided to try to find a way to help her. There was a lot of crying and despair.
She was not told about the results of the tests because this was the unbelievers’ wish. At the time, I wondered whether it would have changed something. I still do.
I knew a lot about AD because in Brussels, I had worked with a young movie-maker who was filming a documentary about AD patients. I remember being aghast most of the time... But I did not really knew those people so I did not feel emotionally involved even though I was very disturbed at the time.
I begged my neurologist to take Yvette into a medical protocol. He said that he had to subject her to some tests before making his decision.
She came over to Paris with her husband and one of her daughters-in-law (they already did believe she was suffering from AD). They stayed with us (Popeye was in Mexico at the time). We went to the Opera which she loved very much. Such a great memory.
And then we went to the hospital. She wanted me to attend her tests. “She’s my friend,” she told the neurologist.
Sometimes I wish I hadn’t been there and sometimes I am glad I witnessed the whole process even though it was one of the most painful experience I ever went through. (Even today, on a scale from 1 to 10, I do think that witnessing her struggle through very, very simple tests was worth a 9 while learning I had cancer was barely up to 6, at least for cancer #1.)
Of course, it was way too late. The neurologist was very kind but it was too late.
For a while, life could still be a lot of fun even if we had to watch over her like a child. AD was spreading so fast that a good day was to be cherished and enjoyed without ever thinking about what would happen next.
Yes, she was like a child. Weird especially the day she turned 60 and 61 and 62 and 63... Why should I concentrate on days and times while everything was going down the hill so fast and so irrationally?
Her husband is wonderful with her. Really wonderful. He never complains. There are days when ‘she is doing fine’ and there are days when ‘she is feeling rotten.’
‘Fine’ is so pitiful and ‘rotten’ is so awful. But he is there.
They had planned a lot of fun things and traveling they wanted to do when he’d retire. Well, he is retired and fun things are not even talked about anymore. She no longer even wants to get in the car to go visit her sisters she was so fond of.
Nowadays she’s physically aging a lot and very fast. One week does make a difference.
I know she no longer knows who I am. She’s still nice, most of the time, with me, that is. The other day, she even said: “I like you a lot, you know.” And I went through this phase: “Who is ‘you’?” but I smiled back at her: “I like you a lot too.”
I have to accept to be ‘you’. At least I’m still a little bit present in her life.
Cancer is so much easier to deal with. You don’t believe me? I am terribly serious.
Cancer is cells gone crazy. AD is brain destruction. You can try to fight against cells gone crazy. How can you fight AD with something which is no longer a brain?
You get very sick with cancer. But you still get a chance to survive.
You can’t survive AD. And you are terribly sick all the time. Sick is not the right word. You go through hell every day. And your family goes through hell every day. And you never get a chance to survive.
Tomorrow, I will go to the farm. She’ll be sitting on the sofa, so still and silent. I don’t mind her being silent because she tends to be quite incoherent nowadays. She will sigh a lot and look at her lifeless hands resting on her thighs. Then she’ll say: “Do ‘you’ want to take a walk?” I’ll agree. She’ll stand up with my help. But since her ‘brain’ has lately quit to tell her how to walk, at least most of the time, she’ll grab my arm. We’ll take a few steps. She’ll start complaining about pain in her feet and then we’ll turn back. We’ll sit down on the sofa.
A few minutes later, she’ll say to me: “Do ‘you’ want to take a walk?’ I’ll agree and...
Maybe tomorrow there will be a respite and she’ll be able to walk around the room and even go outside in the farmyard. And I’ll be so happy she can move around for a while.
But if there is no respite, I’ll be so frightened again.
It is up to 10 these days on the pain scale.
*Good Luck, and Good Night*