Let love light the way...

I believe caregivers have a unique blessing, being able to give back to the ones who loved and cared for them through life.  Not everyone gets the opportunity to return the love given to them so unconditionally. Give a hug, squeeze a hand, spend a little time letting your loved ones know you are there. Even if the memory doesn't stay, the feelings remain and your warmth will tuck them in at night. You are their angels. Merry Christmas and sleep peacefully, my readers and friends!

Okay, so he has issues...who doesn't??

Tonight was a difficult night with Dad. I had a medical procedure yesterday and still had to work today so I was less patient with him than I should have been. What started out as a normal visit became a battle of wills. Lately his feet have had circulation problems so we have been trying to get him to take off his socks and elevate his feet. This has only been going on for a week but this is much more challenging then I expected. His stubbornness and need to see us to the door really presents a major hurdle since I know he likely doesn't go back to bed but just returns to his chair to sleep. 

Tonight I argued with him, threatened to stay the night and have Mike come get Allison who had accompanied me so I could supervise her homework. Trying to split my time between the two while still feeling physically wiped out from the previous day was getting on my last nerve. I ended up physically trying to push him into the bedroom, almost causing him to lose his balance at one point (I felt so guilty later, but at the time I was too frustrated to be anything but angry). He finally gave in, sitting on the bed and putting his feet up. I took his socks off and explained again, "You have had swelling in your ankles and feet, Dad. You need to keep them elevated." Then I put his eye drops in amid more protests and promises to put them in after I left. We are all familiar with this ruse and I explained, "No, I will put them in. All you do is miss your eyes and curse. Just lay back and it will be over quick." I put them in and instructed him to stay there and let them soak in while I put the old socks in the laundry.

 No sooner did I return than I found him already sitting up and putting on new socks. I tried again to make him put his feet up, ran from the room yelling, "Just keep your feet up and I'll call you when I get home. DON'T FOLLOW ME OUT! We will be gone before you get to the door!" I shut off all the lights and ordered Allie out the door, dropping my keys trying to lock Dad's door as I left, then dropping my purse scattering the contents everywhere, gathering them just in time to see the porch light come on. Damn! Things just never work out as planned. I started the car, opened the window and yelled, "I know, I know...ONE RINGY DINGY! Now GO INSIDE AND PUT YOUR FEET UP! LOVE YOU!! SEE YOU TOMMORROW!!", triple honking as I drove away.

"He just can't help himself", I thought all the way home. I know it is his need to control and protect. It is the Dad part of him that can't let me leave until he knows I am safely to the car. I understand but I wish he knew it is that same need to protect HIM that is frustrating ME. All I could think on the way home is that stubborn streak is going to be the end of him...and there is nothing any of us can do. His need to protect is hardwired into his system and asking him to change now is incomprehensible.

Everyone has there own issues, idiosyncrasies and personal struggles that few around them fully understand. One can only imagine what Dad must be going through witnessing the disintegration of his intellect and, with it, his control over his own life, but on some level, if you really try, I bet you could relate his battle with some aspect of your life. Some people have phobias, others have addictions, still others have actual disorders. The worst part is when no one around you can comprehend the why or how of your personal struggle.

As a young woman I had a disorder of which I am neither proud nor ashamed, it is simply part of my history. From my late teens to my mid twenties I was bulimic. I, like many young women felt that my body was not perfect enough. Already being short, I had struggled with my weight since childhood. Magazines and movies all featured tall, thin women. The only short pudgy women were there for comic relief. I tried diet after diet, exercise, pills, starvation, and finally took the easy but dangerous road of binging and purging. I never used laxatives but vomited with frequency ranging from once a week to twice a day depending on how low I was feeling. Anyone who knew what was happening would have been able to tell how deep my problem had grown by the bite marks on my knuckles and the raw corners of my mouth.

The waves of my eating disorder varied as did my self esteem. I wish I could say I kicked the habit because I learned to be comfortable in my own skin but the truth is that with all of the media attention on the consequences of eating disorders over time such as loss of tooth enamel, oral and throat cancer, splitting esophagus, lazy bowel syndrome, diet related diabetes, brain aneurysms, coma and of course untimely death, I stopped as a matter of self preservation. I can, however say that I have not been actively bulimic in twenty years and, although I am not the picture of perfect health and I do occasionally try to lose a few pounds only to gain them back, I am health conscious, lead a happy life and my husband loves me the way I am.

Few of those around me could relate to my self abuse, although Jenny was surprisingly sympathetic. I'm sure on some level she could relate having her own ongoing battle to deal with. I remember her standing up for me once saying, "Erin has to deal with this on her own. You can't force her to quit because all she knows is 'At least I'm not fat anymore'"....Her insight into my problem shocked me. I must give her a lot of credit for my eventual recovery because she was the one who brought up the possibility of oral cancer. I remembered seeing a film about oral cancer in high school showing before and after pictures of a man who had to have his jaw removed. The thought of my habit causing permanent disfigurement was jarring enough to initiate my recovery. If only I could have said something as recovery inducing to Jenny. All I know is that she may very well have saved my life.

That is not to say that all problems need be as extreme as mine or Jenny's in order to develop a certain level of understanding or compassion for an illness outside of your personal experience. For instance, Mike is severely arachnophobic. I am the official spider killer in the family. I discovered his phobia while we were dating and I told him a story about walking through a spiderweb that an eight-legged buddy had made right across my doorway. I really thought he would laugh when I related how I walked inside and realized I had a little spider hanging off the remains of his home suspended from my arm and started screaming "Aaaaaah....Aaaaaah....AAAAAAAH!!!!" and flailing my arm around. As I told him in retrospect the spider was probably also going "Aaaaaah....Aaaaaah....AAAAAAAH!!!!" and hanging on for dear life. Mike did not laugh as I expected. He just sat there in horror. That's when I realized, "Uh oh, I have crossed a line I didn't know was there". Over the years I have become accustomed to the "I see a spider" face and just say, "Point at something I can squish".  It works now but took some getting used to. It's not that I like spiders...I hate them, too, that's why there are lots of big heavy books in the house.  It's really the only thing phone books are good for anymore.

With this in mind, last Saturday, Mike came with me to visit Dad. We got him into bed with his feet elevated and turned on Mythbusters for him to watch as we all hung out there. Dad didn't really get the scientific value at first and wanted to get up but we insisted he continue to lay down and keep his feet up. Mike decided to distract Dad with information about the show. The particular episode we were watching was testing "Shit hitting the fan" and "Getting cold feet".  Dad laughed at the myths, not really giving much credit for the real science of the show but definitely was interested in the "cold feet" part of the show which featured Tory Balleci riding along with a stunt pilot. So, what does this have to do with phobias? Another part of the "cold feet" myth featured Grant Imahara with spiders crawling on his face, big hairy ones...and they used that image to split from one scene to the next throughout the show. Mike really had to be careful of those scene changes because they freaked him out every time and they were not easy to avoid. He was a real trooper, though, and toughed it out for the full episode. He remained animated long enough to keep Dad's feet up for a full hour. My hero!

Kelly wanted me to include her own phobia in the mix: she is severely afraid of bees. I believe I know the root of her phobia. When she was still a toddler she was stung on the toe by a bee. The agonized scream still rings in my mind as one of those parental moments you just can't ever forget. From that moment on, all flying, stinging insects have terrified her. Kelly told me about picking up Allie from school recently, realizing there was a bee in the car and jumping out, locking Allie inside. Allie emerged un-stung but irritated with her older sister.  I had never heard this story before tonight but Kelly seemed equally guilty and amused by her own story of her some what irrational fear.

Allie is equally afraid of snakes. I remember her being terrified of the bucket of rubber snakes displayed at the zoo from a very early age and never being able to get her to venture into the "World of Reptiles" exhibit. The "Harry Potter" movies are completely out of the question for Allie and Mike.

 Poor kiddos...trapped in a family of issues and phobias. Then again...how lucky to know how it feels to be misunderstood for a personal idiosyncrasy. All our fears, issues, malfunctions, etc, can be used as tools to become more compassionate. Who can't relate to being misunderstood?

Tomorrow is shower night. I intend to prepare dinner ahead of time and have a pie ready to put in the oven. Mike will accompany me along with Allie and as a team we are hoping to accomplish what I was unable to do tonight....get Dad to fall asleep showered and happy with his feet elevated and his eye drops soaking in so we can sneak out knowing he is safe and comfortable.

To paraphrase the Hunger Games: May the odds be ever in our favor.

To be continued...

Faded photos and stained glass windows...

I have heard many people say that if they were escaping from their home because of a fire, flood or other disaster and could only grab one thing it would be their family photo albums. The early photos of my parents are almost all black and white. Mom had this beautiful face, nearly black hair and a Grace Kelly figure and I have always thought that Dad resembled a young Elvis Presley. I am not sure what the story is behind their wedding photos but the few that exist have the word "proof" punched into them. Maybe they were so poor in the beginning that they couldn't afford an album or maybe their wedding album was lost in one of their many moves. Whatever the story, those pictures, even in black and white are extremely well preserved. I love looking at them and what a beautiful couple they were from the very beginning. Through the years, their lives were documented in photos and a few precious videos.

When I was in grade school the Polaroid instant cameras were very popular. These cameras didn't put out the best quality pictures but we sure had a lot of fun playing with them. I remember getting a yellow nightgown with little orange birds on it for Christmas and my mom making me pose for a picture. After waiting for the picture it turned out that the only part that did not develop was my FACE. I decided that just wouldn't do so I drew a face on the picture. My mom saved the picture and it still exists in an album at Dad's house. We saved thousands of photos in a huge drawer in my parents dining room for years until Mom finally got a wild hair and organized all of them by year and even captioned many of them. I remember looking at the album containing the last two years of her life and wondering, looking at the many pictures of her, at what point was her condition so advanced she could no longer be saved. I know it is a futile effort but can't help thinking something could have been done so much sooner if she had not been so stoic...if she had not appeared so healthy. I remember looking at a picture of her holding my cousin's two year old son on her lap helping him eat a popsicle just a few months before her diagnosis and thinking, "She was already sick then and nobody knew it". Wondering which picture was the point of no return could drive me crazy. It's a cruel exercise in self punishment, and yet I can't help it.

Now my Dad is sick and we know it, in fact have known it for quite some time. There is no definable point of no return for his condition. Alzheimer's is a slow, ruthless illness, it's early onset subtle and often overlooked. Perhaps someday we will know for sure it's cause, how it may be prevented, and if it may successfully be treated but until then there is no way of knowing exactly what occurred to put my father in the life he is presently living. There is no one picture at which you could look and say, "Yes, that's the one...that's when it all started".

Our day to day observations continue as his illness advances. I am trying to teach my girls to be compassionate and loving, to try not to get frustrated with his repeated questions. Allison came with me on a recent visit. I made sure he ate and took his meds. Allie volunteered to feed the animals and talk to her Grandpa while I wrote a daily entry in the family journal. As I sat writing, I overheard Dad asking her the same questions over and over:
"What's your name?"
"How old are you?"
"What school do you go to?"
"What grade are you in?"
"What's your name?"
"Who's that in the kitchen? Is she your mom?"
"Who's your dad?"
"What's your name?"
I was so proud of her. She took it all with a smile and, like me, trying not to laugh each time he asked her name. After a while he laughed, too, and said, "Why do I have the feeling we've already been down this road?"
"It's okay, Grampa, I understand", she said hugging him. She would never want him to feel silly for repeating himself. Allison is such an old soul. Like me with my dad, she loves to hang out with Mike while he is engrossed in his hobbies. He collects movie memorabilia, and likes to paint movie models and statues. I don't know if she will ever be into those hobbies, herself, but someday she will understand her dad's interests and appreciate them as part of who he is. For now she sits with him in his "man cave" while he works on his models and watches Sci-fi movies much the way I would find ways to entertain myself in Dad's garage so I could watch him work.

I suppose many kids don't understand their parents' passions when they are growing up. For years Mike has enjoyed all kinds of science, history and nature shows. He records series after series on the DVR filling up the memory with all of his favorites. One time the DVR was so full Kelly and I decided to play a practical joke on him. I taught her how to re-name all of his shows. "Ancient Aliens" became "It's Aliens, Man", "Mythbusters" became "Blowing up stuff", "Modern Marvels" became "Dad's Boring Show", "How the Earth was Made" became "Why, Dad, Why?". Mike was less than amused but we thought it was funny as hell.

Having been exposed to both of my parent's many pass times, nothing about Mikes hobbies and shows seems particularly over the top. Actually, engulfing one's self in an outlet seems, not only completely natural but necessary for developing a personal identity. I, myself have had many self taught hobbies over the years although only recently has writing become one of them.

As I have previously mentioned, my mother learned how to cut stained glass windows. Several of them still decorate the inside of Dad's house. I often wondered where mom gained inspiration for her various endeavors. Like Dad, Mom was never satisfied with a life of leisure. She was always busy with some creative project, whether it was sewing, tiling, painting, embroidery, ceramics or stained glass. Of all of them, the stained glass stood out for two reasons: the gorgeous finished products, obviously, and also the havoc that the soldering irons wrecked on her beautiful hands. For some reason the burns and blisters were worth it to her...badges of honor for her hard work.

We collected so many photos over the years: Dad's airplanes still in the building process, Mom arranging bouquets for Paula's and Hillary's weddings, me or one of my siblings sitting in the skeleton of a fuselage, a table full of little girls Mom was teaching to sculpt green ware, a picture Dad took of Tom with Eddie perched on his arm, Mom and her daughters in their Easter dresses standing in the breathtaking garden she planted and nurtured all on her own, etc. Photo after photo of them using every minute of their lives with real purpose and passing that love of life and creativity along to their children and friends.

 One of the problems with looking at more recent photos is that I get lost speculating "When did Dad/Mom start getting sick?", losing the entire point of taking the picture in the first place...to capture the moment, to record the life, to appreciate who they are and how they lived.

The extraordinary man that is my father is slipping away and as his memories fade it would be easy to think of Dad's life like an old, discolored Polaroid photo, losing it's essence and definition...but I would prefer to think of Dad's life like a stained glass window, a work of art with light streaming through it, perhaps losing it's brilliance as the sun goes down and yet no less valuable for the details no longer visible as the lights grow dim. Time will go on but we can still find ways to shine the light through the colored panes and show the wondrous example he and my mother set for us all.

To be continued...