Posts Tagged memoirs
There have been a few (many?) movies and books where the main topic was about someone with Alzheimer’s or there was a prominent character in the story with dementia. Let’s not forget about the books written by someone with Alzheimer’s too. But as shown by the topic of this post….would you? Would you, could you read that book or go to the movies to see that movie? Let me clarify something for a moment, I am not referring to any books that are meant as a help or guide for someone who either has dementia or is a caregiver. Those books I have read!
No, this is about fiction and non-fiction dealing with Alzheimer’s. A few books are: Dancing on Quicksand A Gift of Friendship in the Age of Alzheimers by Marilyn Mitchell, Still Alice by Lisa Genova (now a much touted movie), The Notebook by Nicolas Sparks (also a movie), and Elegy for Iris by John Bayley. I am sure there are many more but these are just a few. A few movies are: As previously mentioned Still Alice and The Notebook, Iris: A Memoir of Iris Murdoch, Away from Her, and Still Mine.
Have I seen any of these movies or read any of these books? No. Why? Because I cannot bring myself to read about or go see a movie about something that I watched for 14 years take my mother away from me. I could probably write my own damn screenplay but then again, couldn’t all of us who are/were caregivers or are dealing with the disease itself? I went to see the remake of Planet of the Apes where the actor John Lithgow, while not a major character in the movie, was a bit of the spark for what led the apes to become what they became. He was portraying a person who had Alzheimer’s. And you know what happened? I freaking cried in the movie!
Did not see it coming; was totally blindsided by this emotional outburst. To this day I have no idea why I started crying but my best guess would be that seeing his decent into the disease and his eventual death reminded me of my time and of a hurt that while I thought I was somewhat past it all, I apparently was not. And that is why as much as the books and movies may be great and Lord I hope they can do something positive to increase awareness (and funding) for a cure/help for the disease, I cannot deal with them. They remind me too much of what I lived through and frankly, I do not like crying into my popcorn!
I was recently blindsided (again – geeze!) by a post I read. It was on the blog of, Frangipani, a woman in Singapore whose mother has dementia. She had a link on her post to the blog of a woman who is dealing with early onset Alzheimer’s. Gill – of Before I Forget – lives in England and wrote a post about how the person with Alzheimer’s feels about the trauma we caregivers feel about taking care of them. For one, it was wonderful to read about Alzheimer’s from the other side of the fence (my mom wasn’t able to fully communicate her feelings but there were days I could sense it) and it was an eye opener. And it was also another Ninja attack right between the eyes for me. Didn’t see it coming and sure as hell did not see the floodgates of emotions it unleashed.
Her post took me right back there to being a caregiver and the things I said to and around my mother somethings that at first were really really horrible and then slowly changed as she became worse and I learned better – not totally – to accept things as they were and were going to be. I ran upstairs to where my husband was cooking dinner (yay for him cooking!) and just sobbed I needed a hug. Him being analytical is asking what? What happened? I couldn’t explain I just needed a hug and finally he caught the clue and held me as I sobbed about some guilty feelings that I thought were long gone…apparently not!
So that is why I cannot read these books or go see the movies. Maybe one day, maybe not but unequivocally not happening now! It’s interesting though that I can read blog posts much more readily. Perhaps it’s because I feel they are more “real” and that I can comment and even start a conversation with them if we both choose. Sometimes I feel that maybe I am in some way helping by leaving a comment or a word of encouragement. So returning to the title of this post – would you, could you read these books or go see these movies? Or have you already? Tell me why you have or haven’t.
Individuals with mental health issues be it bi-polar, schizophrenia, depression, or dementia are still looked upon differently than say someone who has a disease like asthma or Parkinson’s. It’s not as bad as when they had horrific mental institutes that they locked people away in but there is still a stigma attached to it in some places with some people.
Depending on ones socioeconomic status and what culture you may be from, how families think about and handle mental health problems can really vary. Being in a lower income status may limit your access to information and care for mental health problems; sometimes old wives tales become part and parcel of the diagnosis and treatment. And in some cultures they won’t even mention or acknowledge that a loved one has a mental problem.
There may be a tendency for the person with the illness to be taken care of at home by whomever is delegated to have that responsibility and that person may not have much information about the disease or the tools to properly take care of the person with the illness. I’ve even heard of cases where even when the person with the illness was taken to a medical facility their family still wouldn’t mention by name what was going on and heaven forbid it was discussed outside of the home with friends or associates. Even I was reticent at first to discuss what was going on with mom to anyone other than family because of fear and embarrassment.
In a phrase – its just something that is not discussed! But thankfully it is getting better.
True, one may not be able to get the full battery of tests at the cutting edge research hospital if they are far from being rich but that doesn’t mean they shouldn’t be able to get the best care they can outside of going to a public clinic that may not have on staff the medical personnel that can properly take care of things. I still feel to this day that if mom and dad had more than just their pensions and I knew more about what was going on they may have gotten better treatment in the earlier stages of their diseases. Guilt is a bear…
One of the best weapons against Alzheimer’s, dementia, or any disease is knowledge! There is great power in knowledge. Not everything you read on the internet is gospel but it may be a jump off point to get you going in the right direction. Find out where the local chapter is of your Alzheimer’s Association and avail yourself of it’s free information which runs from a support help line to pamphlets they can mail you to a library where you can check out books.
And don’t forget about the support groups. But I must make a confession here about support groups. By the time mom was in a nursing home and I wasn’t as frayed around the edges (but still unraveling bit by bit) every support group I found in my area did not fit my needs. They all seemed to be filled with spouses or with people whose loved one was still in the very early stages of the disease; this was my mother and she had jumped into an advanced stage.
So I never went to one…but I did find an online support group that saved my sanity! It met every Friday and it contained men and women caregivers and former caregivers from across the nation who were at all stages of the disease. To this day I am still friends with two of the women I “met” in that group and we’ve all actually met in real life.
Don’t let embarrassment, shame, or cultural mores hamper you from doing the best you can as a caregiver for your loved one and yourself.