Wrinkles should merely indicate where smiles have been – Mark Twain
On Easter Sunday, I set up a my new backdrop. I wanted to test it out, and to test a few things out on my camera. I had hoped to get pictures of my Mom who is turning 75 this week. While waiting for my “models’ (my children) I asked my Mom to sit for me. She declined stating that she does not like her picture taken due to her wrinkles. I expected that answer so like a child, I said “paaleeeeaaassseee Mom.” She smiled and said she would.
The photo shoot was quick but fun. Just because the woman sitting before me is not the exact same mother I had before FT Dementia and Alzheimer’s, I was blessed with seeing old parts and new of her. Though words don’t come as easily Mom is still vain like many of us. She wanted to look good and young and communicated that she does not like her wrinkles. “I look like a really old lady!” she stated. At one point she decided to pull her skin-tight on her face to lessen her wrinkles. Her behavior was that of a silly five-year old. She had me in stitches and soon she was in stitches too. Mom continued with her child like behavior. It was sweet and endearing. She showed me there is no age limit to vanity.
I honestly don’t remember my mother without her wrinkles. When she was a young child into adulthood she spent every summer at the beach. Then she smoked two packs of Winston a day for over forty years they both took their toll. I bet some of those wrinkles are from her five children (not me of course).
What I got to see through the lens and then on print was a mischievous, sweet woman, wrinkles and all. I am so happy she sat for me! Happy 75th birthday Mom!
I am not an old lady, just a little girl with wrinkles – Edythe E. Bregnar
Sometimes, having things to fight for gives you a purpose. Not that people want to spend their days and nights fighting but sometimes you’re just dont have a choice. I have friends and family fighting through various illnesses. Different types of cancers, different diseases. Each day they get up there’s a checklist that they go through to continue the fight. Medicine they take, treatments they receive on a daily, weekly basis, constant reminders that they are not well.
Alzheimer’s doesn’t give you that option. Through each day they’re dealing with it. There’s taking medicine to cope with symptoms. But no hope in a cure. Yes other diseases have that, but other diseases also have hope. Hope that there’s a future, hope for remission, hope that there’s a cure, hope that they’ll get better. My mother as well as countless others don’t have that hope.
I see my mother fight but in a different way. She fights to find the right words to say, fights to follow what’s going on conversations, fights for her independence. At some point she won’t know to fight. The course of the disease will just continue to go on. I truly wish we could fight against something tangible, I wish there was hope for my mother to get better. I think that has been one of the hardest things for her family to deal with. The knowledge that there is no getting better, there is no beating this disease there’s just living with it and dying from it. I’m not quite sure what’s worse knowing you have to live with something until he takes full control of you, or not knowing that you’re fighting against something that will take you. If there was some hope, we may find peace.
Its official. No denying it. As if the deep voice, height and shaving didn’t tell the story, the birthday did. My baby is thirteen. Officially a teenager. How did that happen?!?! I swear I blinked my eyes and it was here.
There is something different when your youngest “baby” hits an age milestone. You knew all along it was coming. But now with Aidan, him being an actual baby is a distant memory. There are no traces of baby fat, no sign of needing help putting his shoes on. He has moved on. He is now cool. Interestingly with Aidan he is my one child that looks very different from how he did as a toddler/preschooler. Then he was a chubby toe head blonde. Now he is thin angular faced brown haired young man. If it wasn’t for the easy smile, I may not know they are the same person.
Now I get to watch Aidan transition into manhood. Find himself and his place in the world. As I will now transition myself into a mother with no more babies. Happy 13th birthday Aidan!
As a photographer, I am not a fan of Paris Hilton. Her duck face, hand on the hip posing technique has made my job harder. Not everyone can pull off the duck face look, in fact no one really can. Now the hand on the hip, that is hit or miss. As a photographer who shoots a lot of teens, I see it often. I want to capture who the teen really is, not who they think they should look like.
A few years after Paris, Kim Kardashian takes over reality television. Not only does Kim’s derriere take over, so does her speech patterns. Teenagers are now sticking out there tush to get a more desirable booty. Did you ever listen to teens or twenty somethings in line at Starbucks? Their conversations go something like this, “Like, o h – m y – G o d – d i d – y o u – s e e- h e r – o u t f i t?” It is a slow drawn out 80’s Valley Girl talk. Quite frankly it is just as annoying as the Valley Girl talk was in the 80’s. I want to tell these young ladies that speaking that way makes them sound less intelligent, but I digress and close my Mom my mouth.
So here I am, trying to take a photo of a fourteen year old, sixteen year old, you fill in the age. The session often goes like this: First the hand goes on the hip, the booty gets stuck out, the chest is pushed in the opposite direction and the lips become pursed. It has to be uncomfortable, right? There is only one Paris and one Kim. I want to know this child that I am photographing. I want family and strangers to look at the finished product and understand who the subject is. Now I have a barrier to break through. I try to spend more time with this teen, talking and just having them become comfortable. I talk about school, their other activities, what their summer plans are (and maybe boys!) Trying to have them forget a camera is in front of them. After a little time, it works and we all get to see their true beauty. Girls being themselves. Girls being who THEY truly are. I have broken the Paris and Kim effect.
If you have children you may have been a “control freak” at one point. For me it was with my first. I didn’t want anyone driving him around besides me or my husband. I had a routine for him. I also believed that I was the best person to make sure that routine was followed. Although I was tired and wanted help, no one not even my husband could not do it right, which just meant “my” way. This was just my way of making sure my baby was protected. As a mother, most feel a strong desire to keep them safe. (I assume for a father too) As they grow and more children come along most parents learn to loosen up the reigns a bit. These feelings I had with my first child are pretty similar to how I feel about my mother now. My Mom is not always capable of making appropriate decisions. She needs someone to guide and advocate for her. Since I live with her I see this everyday and understand all to well. My Mom will eat cookies for breakfast, walk out of the house without a jacket in 30 degree weather and put a outdoor halogen bulb in a desk lamp. If I say to family members and friends “make sure Mom eats…..” or some other directions, I am thought of as a control freak. When left with the task of taking care of a senior with FTD/ Alzheimer’s its difficult. On one hand you have someone who is obviously an adult. Someone who knows if you treat them like a child and will not be happy if you do. I think when people see my mom, they like to think of her as the “old Elaine”. It hurts them to much to think of her any other way. They continue applying old logic to a new problem. As an FTD/Alzheimer’s caregiver, whether fulltime or just for a few hours a month you need to guide them to the proper decisions. So while I desperately need assistance with my Mom, what I need is someone who will treat her like an adult, yet care for her like their child. I need to know she will be safe, fed and cared for just like a child needs. Its a difficult situation to be in and not be labeled the “control freak”. My Mom’s companion does understand and she is great with her. She is trained and compassionate. I also think what helps is her expectations are different, she never knew the “old Elaine”. I believe in some ways its easier for Mom’s companion then for those of us who have had a lifelong connection with Mom. I am grateful to that Mom has a companion who does not need to have the “control freak” me, looking over her shoulder.
As the holiday season approaches, I feel more and more sentimental and nostalgic. I miss when my kids were little, the excitement leading up to Christmas. I enjoyed reading “The Night Before Christmas”, and watching them hang on to every word. Although older my children have hung on to the magic of Christmas.
I miss my Dad. He always loved Christmas. In fact while he was sick he told the doctor he HAD to be home from Christmas. He made it home weeks before with the doctor telling me the likelihood of him being admitted back in before Christmas was more than 80%. My Dad did not go back in until late January. He got more than he asked for! It was a gift for all of us. My Dad’s last Christmas with us was in 2007. At times is seems like yesterday, but a lot has changed since then.
The most notable change has been my Mom. I wonder how Dad would handle the current events. Known for his patience, I would expect that my Mom would feel a bunch of support and love from him. It was difficult for my Mom to see my Dad journey through his cancer. I would expect it would be difficult for my Dad to watch my Mom journey through FTD and Alzheimer’s. As my mom retreats into her puzzle book this Christmas time since the hustle and bustle around her is to much, I hope she feels the love and support of her family.
Happy Holidays to all!
A few weeks or so ago, while out to dinner with my family, there were a couple of “misbehaved” children. These two boys ran around the restaurant shrieking, laughing and full of energy. One boy came up to our table several times expressing himself loudly. Truth is, they were not misbehaving, they were being themselves. I could see that these boys were on the spectrum. We were not annoyed with boy who came to visit our table, we were joyed to see them at the restaurant.
The mother of the one boy who came to our table would grab him and apologize to us. No matter how many times we said “no worries, its all good”, she still apologized. I wish she would have know that it really was alright with us. I wish she would have known that we were happy she had taken the time to go out and get a bite to eat. Good for her to let someone else do the dishes. I wish I would have told her that.
Growing up, it was a rare sight to see someone on the spectrum out at a restaurant. Maybe that was due to the potential stress it may cause the parent worrying how their child would behave. Maybe the parents were worrying how strangers would behave. We have all seen plenty of children not on the spectrum who have not behaved well. Crying fits, tantrums, throwing fists perhaps because they didn’t gets candy bar or something else. So this situation should not be any different. If I come upon a situation like this again, I will go beyond saying “no worries” and tell that mother or father, “sit down, eat, we enjoy having your child visit us.”
Last week, a strange feeling started coming over my face. Slowly the left side of my face starting from my chin up started to get numb. By the time the early evening hit, I was numb from my eyebrow down and I was scared. Fearing a stroke (yet all day finding every excuse possible) I called my doctor and headed to the hospital.
When I arrived, I was treated like royalty. I have never gotten into an emergency room so quickly! I guess the fear of a woman having a stroke and malpractice can make things happen fast. So after seeing several doctors, performing many simple tests (close your eyes, smile and CAT scan etc…) it was determined that I have Bell’s Palsy. I am fortunate that it is not a stroke. I am disappointed that I have Bell’s Palsy.
Since my symptoms started while I was awake, they were mild. Sunday it was worse, however most people could not tell unless I smiled. Monday was worse, Tuesday worse, Wednesday worse. My left side of my face is in its normal place, as the right side of my face is drooping. There is a good inch difference in my eyebrows. Eating is difficult, my jaw hurts, my ear hurts, I drool. The medicine I am on is giving me crappy side effects. Quite frankly, it sucks.
So each day I look in the mirror and try to convince myself that things are better, or at the very least not worse. Then I go out, try and talk (out the side of my mouth) only to see sadness reflected back to me by the whom I am trying to converse with. I want to explain to them, its OK!!!! My family is awesome through this. On Thanksgiving, I got them all to take a family photo emulating my face. Its hysterical. My friends, have been quick with the jokes such as “why the long face?” These little bright lights, the ability to laugh its what makes it easier. So this bump in the road is again teaching me lessons of compassion, and laughter.
For the past couple of weeks, my Mom has shown what seems to be signs of improvement. After her last doctor visit he adjusted her medications. We made one adjustment immediately and then the other we started a week later. It seemed as if things were better quickly. My mothers mood swings seemed to be lessened. This was the first time that we had seen a noticeable improvement with medications.
As the days turned into weeks, her anger seemed to be replaced by giddiness. She was to the point of euphoria at times. Then it hit me, this is not normal. Something is not right. It has been as if she has had a couple of drinks each day. Even though she was happy, she is struggling for words more and thoughts are not free-flowing. So I called the doctor to report her almost bizarre behavior. He suggested pulling back on medications and seeing how that goes. His true thought is that she has moved onto the next stage.
The next stage. The next stage. This is a time in life that the next stage is not a positive thing. How those words have sat like a brick in my stomach. Now that Moms medications are adjusted (once again). it seems clear she is in the net stage. The up side is that Mom is happier. She still has her angry moments and we can feel her bubbling up, but it doesn’t always reach that intense level as it did 4-6 weeks ago. It is wonderful to see my Mom happy. I will enjoy each moment that it lasts. I now understand that FTD is transient. Tomorrow can be a totally different day and we will cherish each of the good days. Sometimes signs of improvement and not quite what they seem.
In life success can be measured in so many ways. For some its achieving a goal, another its money related and yet another they way they feel. I have probably measured success in each of these ways. Overall one’s feelings of success is usually quite personal.
The one way I have tried to not measure my success is by comparing myself to others. I do not know if this is a growing trend that people are comparing themselves to others, but I have noticed it more and more. Just because my friend accomplished something, does not make me less of person. Yet, the over competitiveness that seems to run rampant is disturbing. I believe some of it is a bit of jealously, some of it is bad manners.
From the time my children have been little, I would say “don’t be jealous”. Be happy for a friend that got the medal in gymnastics, proud of the friend that won the spelling B. Every person will have their own successes in life, not every person is a perfect spellers (no matter how hard they try), not everyone can do a back layout. This is what makes us all individuals, unique. But souring someone elses successes and accomplishments, you are taking joy from them. How could you ever feel proud and happy of your own successes in life if they are muddled by jealousy and someone elses disappointment. Every one will have their time to have success, and most many successes. As a true friend we should be happy for them.