Many moons ago, when we discovered that Mac had Alzheimer's and was well into it. I was asked by my daughter Gaye to join a group - a support group - for those who live with people who have Alzheimer's disease. This was really a good step to take, and one I've appreciated so much over the years...since then, which is actually about nine years or so now.
We, the twelve of us in the group, all had someone in our family - mother, father, sister, brother, husband or wife with the dread big A. We received many papers outlining what we were going through, we were there for twelve weeks, each week gave us new and better understanding of the disease.
One of the suggestions, was that we should read the book, Still Alice.
Well I did buy or get the book from the library, can't really remember, but what I do remember is that I could not get through the second chapter...it was too much to read what we were going through.
I felt that why should I go through the trauma of reading what was happening, and although I didn't know what would happen exactly in the future, I and Mac had a pretty good knowledge and it really wasn't pretty.
So I would not read the book, although the leader felt that the person reading the book would have a deeper understanding of what the person with the Big A. was going through.
I as asked many times, did you read the book, Still Alice...my reply was always, no but I probably will read it. Then the movie Still Alice came out,various friends and relations, called me to say the acting in that movie was super, they had understood so much more about the disease, and really recommended the movie.
For different reasons, i.e. I was living through the disease with Mac, secondly why should I watch someone else, I was able to see this up front and personal. plus by then I knew many others with the disease, spoke to so many in the support group, and again did not go to the movie.
Well yesterday, in the library where I borrow films I saw "Still Alice", well Mac has been dead a year now. I still see people with the bit A. but it's not something that causes churning in my tummy, it is something that I help others with and seem to have a handle on things, so I decided to borrow the movie, and tonight decided to at last, sit down and watch the movie.
Well for sure the actress, Julianne Moore was terrific, she definitely "delivers a Career defining performance", well so much so, that just seeing her start to realize she was forgetting, words, where she was, and then begin to start checking things carefully, my tummy began to get those fluttery kind of butterfly feelings, but I tried hard to just ignore, and say, this is a movie, this is what is happening to Alice, get on with it and relax.
Then came the place in the movie where she decides to open up to her husband and say she is seeing a neurologist and he thinks she has the beginning of onset of Alzheimer's even though she is really much younger than the average age for getting the disease. Her husband says, "impossible"...precisely what Mac said, when he was first diagnosed, and when he was referred to a neurologist.
When Julianne in her role screams and starts to cry out to her husband, listen to me, it's true, ..that's when I lost it...and said right out loud in my apartment here without anyone to say it to. What am I doing I don't need this..and turned the movie off.
I think my many friends whose parents, husbands, wife,who have and are still going through this sad time, must have something I don't have..because some of them have recommended the movie to me in the past. Some have seen the movie earlier or later in the disease, how strong they are, as I could not take it.
In fact just last Thursday, I went to a Sugaring Off Party at a Cabana Sucre with the Retired Teachers Group. One of the teachers said, "this is such a break for me, my husband is in "Heron House" (An assisted living Residence) he has alzheimers. Twice a week I go to help him eat. Some times he knows who I am, some times he doesn't, sometimes he can eat by himself, other times he can't. Just yesterday, I had to help him eat he didn't know what to do with his fork. " I am so happy that we have placed him where he gets the help he needs"
The same thing happened to me as when I started the book and watched the movie..my tummy started to churn, I was about to cry, so had to move away, saying to myself, I don't need this.
Now, I have no problem with being with the people with the big A. right here in the building, or helping my friend's mom, Alma, over in the building in the back of us. I don't understand what I'm going through, but I know it has to do with just how deeply it hit when Mac was ill in the first few months, I guess I just start to relive...and for sure I don't need it.
Writing about it right now, has helped, I've gotten rid of the heavy feeling, and the sadness I felt and at time still feel for Mac. I really want to remember the happy times, even when he was ill, because for sure there were more good times with him ill than bad..and though I wouldn't want him back with the illness, I surely am so happy we had those years together, becauses he was Still Mac...
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