Epilepsy Awareness Month Day 20: Memories

One impact epilepsy has had on Robert is on his memory.  I don’t quite understand why he has memory problems (which have definitely increased as time goes by) but I am positive it has to do with his overall decline from epilepsy, his brain surgeries, medications, head trauma and uncontrolled seizures. 

Robert and our childhood dog, Tara

Rereading that sentence makes me realize that I do understand why he has memory problems but I don’t quite understand the mechanics and details of it. Whenever I am unclear on something going on with Robert, I do some research and then talk to his neurologist about it.  Epilepsy Action “the UK’s leading epilepsy organisation” addresses the topic of memory problems in people with epilepsy.

Robert’s neurologist is aware of his memory problems but we haven’t done anything yet to resolve them.  I am not sure there is anything that can be done considering he has to be on all of the medications he is on and the damage to his brain from the traumas and surgeries has been done.

Sometimes after a seizure, Robert is confused and doesn’t know where he is or who we are. Recently, he has had trouble remembering who I am, in particular.  He has even said things like, “You’re not Trish” or “You’re like a sister to me” but these have been after a seizure. 

This morning, I was driving Robert to Day Program and was talking about the weekend when Robert said, “My sister Trish is going to pick me up that day.” 

I did a double-take (it was a quick one since I was driving).  It is possible he had a quick seizure that I didn’t notice but it was very disconcerting.  Eventually he realized I was Trish but it took a few minutes of talking to him for him to realize it.

What is amazing to me is that he remembers things from when we were kids (better than I do) but can’t tell me what he ate for lunch. (Although, he was able to tell me that he did not have Rocky Road ice cream last night for dessert so it was Rocky Road ice cream night tonight.)

Robert started telling a story at dinner out of the blue.  I grabbed the camera part way through and captured him talking about moving out to California, his favorite book which he read as a young boy and also about changing schools when he was in high school. 

He said he had to change schools because he was having too many seizures and the school asked him to leave.  I don’t remember this but don’t doubt it one bit. 

It broke my heart a little.

The clip shows how Robert struggles for words at times and also searches for a memory that he just can’t quite reach. 

The background noise is distracting so I apologize.  I didn’t intend to film him during dinner but didn’t want to pass up the opportunity to capture his memories. 

Epilepsy Awareness Month Day 17: Photo Surprises

It is a good thing Robert is a ham! I certainly couldn’t get him to participate in so many videos unless he loved the camera. 

Robert is in the middle of this group of pictures -
standing tall

Robert also loves to take pictures. For years, Robert showed up to every family event with a camera around his neck.  I wonder how much of that was passed down from our mom who also loved her camera.  She created a dark room in our house so she could even develop her own photos (a few of which I have hanging in my office). She was a fanatic when it came to her photos and there were so many “take two” action shots at Christmas and birthdays, it became a family joke.

All three of us kids: Can’t we just open our Christmas presents? 

Mom: Not until we get one more shot of racing down the stairs, now get back up there! Look excited!

Dad: In the background, laughing at all of us!

Since we lived in Nebraska when my brothers and I were young, Mom also used to usher us into the basement during a tornado warning and then race up the stairs and outside to capture pictures of storm clouds and – I’m sure she hoped – a tornado or two. 

Yeah, Mom was a little on the wild side. 

Robert seemed to get that photography gene from Mom. (It actually might run in the family as one of our cousins is a terrific photographer!). 

Robert still likes to take photos but it is practically impossible for him to manage a camera since his dexterity has declined and his tremors make it difficult to hold the camera steady.

It saddens me that a hobby Robert really enjoyed (and maybe in some way, connected to our mom with) is something he can no longer do.  He just can’t operate his fancy camera anymore. I have given him disposable cameras to use but they just don’t hold the same appeal to him. 

The impact epilepsy has had on this part of Robert’s life is that it took away the ability to continue to do a favorite hobby.  He still enjoys being in photography class at his Day Program and usually lists it as one of his favorite things to do so the hobby hasn’t completely ended. Plus, Robert has other hobbies/obsessions: word search puzzles and watching game shows.

When I took over Robert’s care, I found a whole camera bag full of undeveloped film. It sat for years on my to-do list until I finally took them to Costco for developing this past weekend.  I was afraid these nine rolls of film would be so old or maybe damaged that nothing would be on them.

Only one roll was a bust – the rest held delightful surprises for all of us.

Which, of course, I filmed.

I actually filmed Robert looking at the pictures over a couple of days.  It is not edge-of-your-seat action but it is raw footage of Robert looking at pictures he took and remembering people from years ago.

Makes me want to pick up a camera! Oh, wait . . .

Clip 1:

Clip 2:

Moments and Memories

Other Brother sent me a link to our dad’s house which is now for sale by the bank. Seeing just a few pictures of the house brought back flashes of memories of time spent at the house.  We didn’t grow up there – it was a house Dad had bought when we were all grown and he was marrying his third (or was it fourth?) wife for the first time (he married and divorced this same woman twice).

Dad's porch

Dad was Willy Loman, Rich Man/Poor Man and Jack Nicholson rolled into one.  His fortunes were always most certainly followed by losses so great he would call me for cigarette and Diet Pepsi money.

When Dad’s time ran out, his money had already run out months ahead of him. 

His house went back to the bank; his possessions were sold to help offset the cost of his funeral and the rest was either tossed or given away.

The pictures of this modest house which had been in a state of disarray when Dad died showed the bank had invested in new paint, new roof, new carpet and a bit of landscaping.

It didn’t look half bad.

The pictures also showed an empty house but with each click my mind filled in the blanks.

The kitchen was bright and cheery and probably didn’t smell of smoke since the drapes had been removed.  The dead plants in the corner near the sink could only be seen by me. 

His 20 year old refrigerator would have been filled with orange juice, Diet Pepsi, hot dogs, a mostly empty ketchup bottle, A-1 Sauce and leftover cooked noodles. Sometimes cans of beer and half empty bottles of wine. 

His freezer would have been packed with frozen meals, vegetables and meats and a variety of ice cream treats. The outside of the fridge would be covered with pictures of the kids and grandkids and their drawings as well as pictures of the children of a much younger woman who was only around during the times of fortune.

The cupboards held several years of Girl Scout cookies, cereal and crackers – mostly all expired.  The counters and stove were covered with a thin layer of grease, only removed when I visited since he had fired most housekeepers in town and those he hadn’t fired, knew to stay away. 

Birthday cakes had been cut and served on the island as had a Thanksgiving turkey or two.  On one of his birthdays, Dad had sat in a kitchen table chair and was adorned with a crown, a cape made from a blanket and confetti sprinkled on him by two of his young granddaughters. And then ventured out to a restaurant – still in costume – much to the delight of the girls.

The rest of the rooms of this empty, bank-owned house brought back as many memories.

In the family room, more pictures of the grandkids sat on the fireplace hearth and Christmas stockings hung half of the year. We got Robert settled on the couch after Dad’s funeral and he worked on his Word Search while dad’s older brother sat protectively next to him.

The living room was where Dad had sat years before telling me the FBI was spying on him; where he would sit and read or watch his gigantic television crammed into the little room because he thought the cable reception was better. It is also where Richard, Rachel and I found him only half awake and completely confused when his kidneys were failing him, only hours before he died.

This was also the room where his brothers and sister and Other Brother and I hung out, looking through pictures and telling stories after Dad had died.  

The front porch had been fixed and had a fresh coat of paint on it. Dad would call me from the front porch and tell me how he liked to put on his pajamas, lay down a blanket and sit on the porch watching people go by. I pictured him with his Diet Pepsi, cigarettes and wearing only his sweat pants staring at people as they walked by and wondered how long it would be before the police showed up.

This house held a few weddings – one or two of dad’s as well as that of Robert’s.  Robert was a young man in his twenties when he married a woman (who later turned out to be a thief) but on that day, Robert was happy. His smile was broad and he looked sharp in his tux. Other Brother and I were amazed at our little brother getting married since neither of us had thought this was in the cards for him. His marriage didn’t last much longer than the honeymoon but I will never forget the smile on Robert’s face before he went into the backyard to say his vows.

For a house I never dreamed would mean anything to me, it has filled my evening with memories of both good times and bad.  A few pictures of a non-descript house has filled my heart with love for a dad who was both exasperating and fascinating and who loved his family with all of his heart.

These few pictures have made me smile thinking of my daughters who are thoughtful and funny; brothers who I adore with all my heart and aunts and uncles who are thousands of miles away but as close to my heart as you can get.

The bank may get the house and they may recoup their investment since the market is improving but these memories – they don’t get those. 

Those are mine to keep and to remember with just a glance at a picture or two.