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...

A sense of camaraderie

As I have begun sharing my father's stories and the daily adventures we go through as caregivers I have also become aware of a support system that I never knew I had. With regular caregivers in our family, our individual loads are reduced but we have to know that we can depend on each other. Most of the time this is not an issue. Dad's daily care includes observations that we have begun sharing in a handwritten journal I have left on the table. Sometimes, entries take up a page or more while others are just a couple sentences about Dad's demeanor. It is my hope that the journal will help bind us together in our communication about Dad's condition.

For the past three days, we have all been somewhat iced in (a rare occurrence for North Central Texas) and communication about Dad's care has been a high priority, particularly asking for additional help from whoever has a heavy vehicle/truck that is likely to make it over the ice to check on him. We have all been communicating back and forth. Mike and Bradley have been the biggest help, braving the ice to insure Dad's safety. The ice isn't due to really melt until tomorrow so their help has been incredibly valued and appreciated.

Support among family members is pretty common (at least I hope that is the case) but I have also found that since my online journal began I have had supporters I never knew were there coming out of the woodwork. One of my friends, Elliot, wrote the following message to me after reading my first two entries:
"Erin, I just read your blog through tears. It is beautiful and heart wrenching. While my experience was different (because everyone's is), it was strikingly similar. While dad had his three year battle with cancer, his mother had her Alzheimer's battle going on, and while she was in a facility, her social life and major decisions fell on my shoulders. For most of his battle, dad was in some sort of chemo and could not be in the place his mother lived because of germs. When she was passing, he had just had a stem cell transplant, so I coordinated her funeral here, as well as one in Kansas where she was buried. I don't know why I just unloaded on you. Maybe for a sense of camaraderie, or maybe to let you know you are not alone. It's tough. It will get tougher. But you will get through it. And your friends who don't seem to get it will eventually get it. Oh, and the good friends? When you feel like punching someone? They will stand there and let you punch them. Give them that chance. Hang in there."

This outreach was extremely moving to me because I have known Elliot for so long and never knew his personal struggles with his parents. We have been friends since grade school and had I known he was going through such tough times I would like to think I would have reached out as he so graciously did for me. The loneliness and sense of pressure caregivers feel can be very isolating. It is a deeply touching moment when someone offers a hand of emotional support.

 Another friend, Katey,wrote:
"Hey I've read your blog. You've brought me to tears because on some level I know what you're going through. I lived with my grandfather while he was in the final stages of Parkinson's & dementia & with a grandmother who wanted nothing to do with helping him. My dad had his ruptured aortic brain aneurysm almost 10 years ago & he's not been the same since. Thank you for sharing & opening up your experiences to others."

It broke my heart for her to read that her grandmother had rejected supporting her life partner but reminded me what a strong friend I have in her. I know I could discuss anything with her, any aspect of Dad's care (and what might be best not to publicly share for the sake of his dignity) and she will understand. I have not known Katey very long but can honestly say she is one of the most trustworthy people I know.

One of Mike's former coworkers, Toni, also wrote to me:
"I truly can relate to your blog Erin....as you know we take care of Wayne's mom. And his dad also before he passed. They both lived in our house and his mom still does. His dad had Alzheimer's and this is so true. Wayne's dad was very belligerent and he also would say foul things that he never used to do from what I understand. Thank goodness his mother has not yet gotten Alzheimer's. I enjoyed your blog, I know that other caretakers would definitely benefit from reading about it. It would give comfort to them seeing that they are not alone, and strength in knowing that it is "the disease". Being a child of a parent with Alzheimer's is so cruel....having to see their loving parent, their idol, the person they have admired so has become someone they can't recognize...someone they sort of grow to detest....and then how are we supposed to remember them as we knew them, the way we want to remember them...That is the cruelest thing we should never have to endure. Bless you, Erin...for your strength in this...you are doing the right thing. You know what your dad would think if he was in his right mind. Sometimes we have to cry or scream...and remind ourselves of how they were by looking through old family photographs, etc., but writing is also good. And you will be helping others tremendously as well. Hang in there."

Such a good woman with a beautiful heart, she has been a constant support through my writing of this journal.  

Finally, I would like to include a message from my friend Valerie who lost her mother a year ago and wrote:
"I laughed out loud.....and then cried. I celebrate my grandmothers birthday today, I lost her to Alzheimer's long ago. You are an incredible daughter. Your Dad may no longer be able to express this but his undying spirit always will know. On the not so funny days I hope you see and feel the bigger picture. I hope you know you are his hero. Even when it doesn't feel that way."

I know part of her message was not as much from the loss of her grandmother but her more recent loss, but any loss is soothed by knowing someone cares. To "Valerie" (you know who you are) I just want to say how lucky I am to know you and appreciate how much you have cared for me and my family through this new phase we are traveling. Love you, sweetheart.

Until a few weeks ago none of my siblings knew I was writing this blog. One day when I arrived at Dad's house, Hillary was still there. She was talking about how whenever she emails friends and acquaintances she feels she goes on and on. As I have mentioned before, Hillary is a talker and none of this surprised me. Having only recently been diagnosed as being severely ADD in her fifties, I feel she really has something to contribute to the world considering her coping mechanisms that got her this far in life. I decided to gently approach the subject of my online journal.
"Have you ever thought about starting a blog?" I asked.
"Actually, yes but I don't know how to begin", she responded, obviously very interested in where I was going with this.
"Can you keep a secret...I mean really, really, really keep a secret?" I asked.
"Yes..."
"I have a blog. I've been writing about THIS (gesturing to Dad). All of this. I have changed everyone's name but it's really out there. I'd like you to read it, but before you do I want you to know that it is very straight forward and written as events have actually occurred. It is growing and growing. I have readers in six different countries now!"
I was very concerned she would not approve but I have to say she has been wonderfully supportive. "You have to keep going on this, Erin. You are helping people. You are letting them know they aren't alone. This is a really good thing", then she asked, "How would I start a blog?"

"Straight forward" I suggested. "My first words were 'My father has Alzheimer's.' If I were you I would start with 'I am in my fifties and just found out that I have severe ADD and have had it my whole life." I don't know when she will start it but I am excited for her and can't wait to see what she writes.

If you are going through this, my hope is to show that these messages are not intended to pat myself on the back. These message are for YOU. YOU ARE the caregivers all of these friends and acquaintances are talking about. I know what I'm writing is really not that unusual, other then I try to add as much humor to it as I can because I think humor is a vital element to survival as a caregiver. Without a sense of humor, the weight of your burden will kill you quietly.

Readers have also written their support and I thank them for that sense of camaraderie, as Elliot put it so well. My point in this post is to encourage my readers to reach out, even blindly if necessary. You never know where your support will come from. Like the steel supports of a building, everyone counts...every support gives you more and more strength to go on and improve, to seek new approaches, and to become a better and more patient caregiver. You will need all of it for your journey.

To be continued by ALL OF US... 



 

She-Hulk Gripe session!!

Okay, let's begin with I am not perfect, my family is not perfect, my days are hopelessly imperfect. I have three dogs who are only mostly house broken: Penny, who makes a point of turning all of Allison's dolls into amputees and is obsessed with dragging the larger doggie beds through the tiny dog door and into the back yard (I have no idea why she prefers them out there but am impressed she is able to do it at all), Skyloe, who hordes any wrappers he can fish out of the trash behind the couch, and Fartin' Martin who pretends to be sweet but when you aren't looking will lift his leg and claim various pieces of furniture as his personal property.

There are no neatniks in my family. Kelly's room looks like a bomb went off in a teen clothing store. Allison keeps most clutter on her dresser and desk but the debris from her projects migrates under all the furniture, particularly her bed. A few days ago I was helping her scoot all the hidden rubble out from under her bed with a broom and commented that I would not be at all surprised to find Jimmy Hoffa under there. Someday she may think that was funny but at the time she just gave me confused look.

Mike...he's not clean. His quirks have become legendary. One of my favorite is his craving for whole cans of chocolate frosting, the remnants of which I find in some of the weirdest hiding places. I discovered this idiosyncrasy when we became engaged and moved in together. One morning as I was still trying to wake up, I hopped into the shower and without looking reached for the shampoo. I felt a container that was definitely not a shampoo bottle, looked down and realized I was holding a can of Betty Crocker Rich & Creamy Chocolate frosting. Did I mention I was IN THE SHOWER? Later when I spoke to him all I could say was "That's quite a habit, baby." We have been married almost 13 years and as I write this there is a half eaten can of Hershey's cake frosting on his night stand. (Incidentally, he is not fat! I don't have a clue where he puts it.) Shoes and clothing litter his side of the bed so with each residence we have occupied, his side of the bed is determined by which one is not visible from the doorway.

That is not to say I am the cleanest person, either. I have what could be deemed an organized mess. The most frequent pair of shoes are placed on my side of the bed along with my slippers, the rest going into the closet as I prefer my shoes undamaged from being kicked around...so shoes are not really my big problem. My issue: I am an incurable stacker. I have a lifelong habit of stacking items for re-use. In order to preserve my clothing I usually will wear each item (other than socks and undies) at least twice before washing. Often I will lay the item to be re-worn over the end of the bed. After a while I have a stack of reusables waiting for their next wear. Sometimes they get so overstacked that they slide to the floor. Of course, this habit extends to other things such as books, dvds and mail as well. Little towers of things to wear, watch, read and use are my personal neurosis marking every residence I have taken in my adult life.

Before becoming a caretaker, my house was chaos so to expect that my family will suddenly become cleaner because of the pressure imposed by the caretaker schedule is not only unrealistic but hilariously absurd.  It is expected of all of the caregivers to make some effort to clean up their messes as they occur so that no one person is burdened with the upkeep of dad's laundry, dishes or grocery shopping. I think it works well for Dad but sometimes it is unclear who has what additional duties beyond cleaning up after dinner. With Dad's diminished ability to recognize a problem when it occurs the ideal situation would be for each caretaker to make a cursory patrol of the house to see if anything is amiss and report back to the others if it is more then a one person job...but what is ideal and what is put into practice frequently clash.

Minor catastrophes that have gone unchecked until they bordered on major ones are as follows:

• Slow flushing toilet in a remote back bathroom that apparently all the younger kids used (because it was conveniently close to a toy room) but none felt obligated to tell us when clogged. It took a "What is that SMELL?" demand and a household search for "what died" to bring it to general attention.

• Broken, and I mean split in half, "bite you on the ass when you sit down" toilet seat in bathroom by the car port. I never heard a reasonable explanation for this but if one ever materializes I will be sure to relate it to my readers.

• Leaking sink in the kitchen causing swollen floor boards.

• Broken water heater related to the kitchen making hand washing difficult in summer and excruciating in winter. Fortunately, Dad had a separate water heater for the bedroom area so at least bathing and grooming remained reasonably comfortable until we could attend to the problem.

• Broken AC in mid summer. Much like the water heaters, Dad has two A/Cs , one for the back bedroom and one for the front of the house. This repair didn't seem to be an emergency until we realized he rarely spent time in the bedroom. Such heat as we have in Texas can be life threatening to an elderly person. Definitely an emergency.

• Pipe leak in the back yard. It was not obvious at first but when we realized during one of the driest Texas summers in decades that Dad's backyard was a swamp, the only explanation was a pipe leak. His water bill was outrageous and the additional mosquitoes when everyone was spooked about West Nile Virus were pretty scary, too.

Minor emergencies followed minor emergencies in what should be a relatively new house. Once one repair was made another unrelated one would pop up...as Mike said so eloquently, Dad's household repairs became "a plethora of 'FUCK!'"

We handle each problem as they happen but they are a drain to Dad's retirement. I have been asked, "Wouldn't a retirement community be easier, less expensive?" Well, yes, and it would kill him as I have said before. I know sooner or later we will need to start liquidating assets. Dad's SUV is not very old and has incredibly low mileage on it. It would probably be fairly easy to sell and bring a reasonable price. The problem with that is by selling the SUV the carport becomes empty creating the illusion that no one is home and possibly increasing the danger when there is no care taker at the house. For now, selling the SUV is not an option.

So what is this gripe session about? When I get home from a long day at work followed by a rousing evening of taking care of Dad, walk through the door to find a dismembered Barbie, a disemboweled dog bed, dishes in the sink rather than the dishwasher, the back door open, TV on (no one watching it), wrappers, cans and other debris on the floors and counter...let's just say I'm just a few gamma rays short of turning green and putting some offspring through the drywall.

Two nights in a row this week, Mike has awakened to me slamming things around cleaning up what should have been someone else' job on a night I take care of my father. He tries to calm me down and promises to help and light a fire under the girls butts. However, in fairness to Mike, his plate is outrageously full as well.

Today we took a family trip to the Container Store to figure out what each daughter would need to get her room together. Mike, the girls and I will have a family dinner meeting this evening. I am hoping the major discussion will be teamwork. I will let you know how that works out...but I make no promises and hope for no lies.
(to be continued, and continued, and continued)

Buddy, the Unlikely Hero!

This is Buddy, Daddy's best friend and possibly his salvation!

It is no secret that our family is way beyond animal friendly. We always had pets when I was growing up, sometimes as many as seven at a time. Dad could never turn away a stray and sometimes it almost seemed the strays of the neighborhood actually were given our address as a sure thing for a new home. There was even a time when Mom, Dad and I were sitting on the porch enjoying lunch when out of the corner of my eye I saw something blue flit through my peripheral vision and land on and antique bird cage that mom had converted into a hanging plant holder. I looked more closely and realized it was a parakeet! I motioned to Dad to look at the little lost orphan and he lit up. Without hesitation he gently approached the bird, "Hello, sweetie pie! Are you lost?" The tiny bird didn't resist as dad wrapped his hand around him and brought him inside. He then gave me his credit card and instructed me to go get a proper cage and seed for our new guest. We named him Petey the Parakeety. When we spoke about the luck of him choosing our specific house it seemed obvious that he actually landed on the antique cage  because it probably appeared to be the closest thing he could find resembling his previous home. He and Dad had a special relationship. I can honestly say that he is the only parakeet I have ever heard sing as though he was a song bird, but every morning when Dad would walk into the kitchen and greet Petey, the little blue fellow began to chirp happily like he was talking to his best friend. He was a wonderful bird and Dad loved him dearly...for an accidental pet, he was sorely missed when he eventually passed.


After Dad ended his falconry/raptor rehabilitation/re-population project we only had two cats. Although Mom was sensitive to animal dander she loved our cats, Tom and Timmy. They were indoor/outdoor cats and caused very little trouble. We were all very attached to both of them, each having lived 17 and 18 years respectively. For Mom, losing Timmy was very hard. He was her little friend, cuddling with her and comforting her when Dad would work late or have to leave for a seminar or and airshow. He died suddenly of kidney failure. I don't think Mom could open her heart to another pet like that again. Tom was everyone's cat but mostly Dad's and mine. He was tiny but tough; a brawler, familiar with every cat in the neighborhood. It seemed as if he used up not only his own nine lives but perhaps borrowed a few from Timmy. Dad adored him and when guests would come over he would pick Tom up, put him on the table and brag about how "solid" his little orange cat was. Tom was so muscular you could feel every ripple in his back and shoulders. Dad was very proud of his little scrapper. At age 17 Tom seemed like he would live forever, but one day he lost a fight and his eyes were scratched, blinding him. Tom refused to eat after that fight, willing himself to die presumably because he could not imagine continuing life as a blind cat. His little body became emaciated in a matter of three weeks. A week before Dad and Mom were to attend an out of town medical seminar, Dad said if Tom was still alive when they got back we would do the right thing and have him put down. The morning they were set to return, Tom, who was sleeping beside me woke up crying. I pulled him close and talked to him, stroking him. He only lasted another 10 minutes and I felt his breathing slipping away. I was glad Dad didn't have to make the decision to let his little friend go. Poor Tom had made up his mind to leave quietly on his own. I still consider him one of the best cats we've ever had.

It seemed neither of my parents were inclined to rush out and get a new cat or dog, after that. When Mom died, they had no pets at all. Mom had her garden, Dad had his airplanes and they had frankly been burned out by all of the animals  running their lives for so many years. Maybe they just needed a breather, especially when looking forward to retirement...but then Mom's unexpected death changed everything.

I am not sure how common was dad's reaction to losing his spouse, but he took no time off work other then the day of the funeral. In fact I think he threw himself into as many  surgeries as he could handle in order to postpone his grief for as long as possible during those first few weeks. We all worried about him coming home to an empty house after work. When we all pitched in to get Mickey, a bird seemed like a great solution...but after a while it was clear that Dad needed a better pet then just a living, eating, pooping, noisemaker. He needed a companion. The grief alone underlined his isolation enough that we were concerned for his mental health. The growing memory issues and suggestion of grief related dementia amplified our worries even more.

Right as we were in the process of hiding dad's keys and modifying our schedules to help him, my nephew, Bradley, and his girlfriend at the time bought a puppy. The beautiful black and white fur ball was completely irresistible, full of puppy energy and just the thing to distract dad from his growing loneliness. Suddenly Dad was inspired by a new idea: he wanted a dog. At first I think some of us were a bit reluctant to introduce yet another pet into his rapidly shrinking world but Dad was insistent. He had not had a dog since the late '70s and, without a partner to protest, who could really argue with such a strong need for companionship? Paula and Hillary brought Dad to the local animal shelter and browsed a wide variety of dogs. None of us were unfamiliar with the proven benefits of therapy dogs, but I do think my sisters were expecting him to choose a smaller breed. Small, it turned out, was not at all what dad had in mind. In fact, I believe he really was looking to reincarnate his childhood pet: a black labrador retriever he had named Buddy.  What he found was a gorgeous, six month old, Austrian Shepherd mix with a dark black and copper tortoise shell coat. It seemed the only name Dad would even consider was Buddy...and it suited him better then we could ever have imagined.

It was kind of funny watching Dad adjust to having a pet again. For the first few weeks he would wake up, see Buddy and ask whoever was around, "Who's dog is that? Is he yours?" forgetting that the gangly newcomer was now a permanent resident. After a while it finally sunk in. Buddy was his new companion.

We worried that such a large dog, still uncoordinated and not even fully grown, might actually be a danger given Dad's weakened physical state. Although Buddy's exuberance threatened to throw Dad off balance many times, his energy also motivated Dad outside to throw balls and frisbees. Dad had a large fence installed and a zip line leash to keep Buddy under control until he was better trained. Constantly concerned for Buddy's well being, he would loop on whether or not Buddy had been fed.
"Yes, Dad, I just fed him", we each reassured him.
"A whole can?" he pressed.
"A whole can!" we would confirm.
This loop still happens every time anyone visits. I think it is the one loop that nobody ever minds. Dad is just looking after his little friend and that loving concern is completely appropriate.

Over the year that followed his adoption, Buddy proved not only that he was a good friend but probably the best dog dad could ever have chosen. 

More than anyone else, Buddy successfully got Dad out of his chair every day. Even during a sports game, he would sit patiently in front of Dad and stare at him as if to say, "Why would anyone want to WATCH a game when you could go out and actually PLAY frisbee?" Dad would always give in and go out, enjoying tossing of whatever Buddy would bring him, watching his furry pal find sticks to show him and chase squirrels around the yard. After a nice romp, they would go inside for a snack. Buddy would wait for the last bite of whatever Dad was eating knowing that Dad would invariably share a taste with him. After that they would turn on the TV, watch a show together and play "lap puppy". I think if Buddy ever were to look at his reflection in the mirror he would be thoroughly surprised to find that he is not a Chihuahua. All Dad has to say is "Come, on!" and Buddy hops into his lap trampling Dad's stomach and groin as he finds a comfy position to nap.

Buddy is the definition of a therapy dog. He has given Dad his unconditional love, motivation to live and someone for Dad to look after...and he looks after Dad, accepting Dad as, not only his best friend, but his personal responsibility to guard and protect.  Buddy is an essential and irreplaceable part of Dad's survival and we owe him a huge debt of gratitude....and perhaps a few tons of jerky treats.
 

Note to my readers...Smile, it's a beautiful journey!

Well I tried to re-share my first blog entry and was giving a description letting you all know my intent...but blogger cut me off before I finished my comment. hahaha...Blogger is a bit impatient today. Anyway, what I intended to convey is that this journal is to help other people caring for someone they love who has any kind of affliction whether it is Alzheimer's, dementia, cancer, paralysis, etc., in such a way that they might learn to love the journey, find the humour (there is much more humor to be found in the life of a caregiver then I think is generally shared. Too much focus is placed on the sadness and desperation when the journey can be such a loving experience). I hope my readers can laugh, love and cope along with me and if they feel so inclined, share their thoughts and experiences with others as well.
Peace, all of my readers and friends.
~Erin

Perspectives: "Even the worst memories become precious"(part 2)

We all give what time we can to dad. Some of us are more generous than others with our time. I can tell you that Hillary gives her time to an extreme level, but as I mentioned before, I think it is a way of grieving for Dad before he is actually lost. I fear for her and how his eventual passing will effect her. The one thing I know for sure is that he loves her visits. Her lively conversation brightens his day, makes him laugh and, in a way, is easier on him then chatting with others because Hillary dominates the conversation. She really chatters the whole time she is there and doesn't stop until she leaves. Most of my visits start with me trying to scoot her out of the house. Like Columbo, there is always "Just one more thing..." she has to say, ask or show him.
Even Dad is shoving her out the door after a while, "Go home! Try to be a good girl!" he insists.
 "I don't have anything going on in my life to get me into trouble", she laughs (true, Dad IS her life) and then she wrangles her giant boxer dog out the door.
While this is going on, I sit back and try to stay out of the way. Her time is her time and I don't want to interfere. He so enjoys her company I don't yet have the heart to get annoyed with her. From inside the house I can hear her jabber all the way to her car. After she drives off and Dad shuffles back in, he always smiles and shakes his head. "JEEZ!!!" he sighs loudly, followed by a chuckle.
I snicker, "I know, right?? I want to tell her 'TAKE A BREATH FOR HEAVEN'S SAKE!'"  We both laugh and continue with our visit...but it's a fun note on which to begin.

In stark contrast, Paula is so very level headed and her visits are more subdued. Her entire Sunday is spent with Dad, attending church, covering bills, discussing whatever the business at hand may be, or catching a sports game on TV. She also usually surprises him with a homemade dessert of some kind. Recently I noticed that the lock on dad's back door was a little sticky and although it would probably be an easy fix, I suggested to Mike that we make an unannounced stop on Sunday afternoon to take care of the problem. Mike and I walked in and saw Dad sitting at the table eating (or, rather, not eating) lunch with Paula, her 4 year old grand daughter running around in the family room, playing. Mickey's bird cage had been pulled up to the table so he could also enjoy the company. I wondered what had transpired prior to our arrival because Paula seemed a bit tense. It could have been anything, maybe not even having to do with Dad or the visit. Dad didn't talk much. I was struck by how old and frail he looked. Was I that oblivious during my visits that I had to see him in a group to recognize how much he had aged? He seemed 10 years older then just the year before. Maybe it was just because I mostly see him at night and the dimmer lights are kind. 

We said our hellos and set to the task of fixing the door. Dad kept asking, "Who's over there? What are they doing?" and Paula would explain again and again, "Mike and Erin stopped by to fix your lock." I know that having to repeat herself was starting to get to her but at least it didn't take very long...and we are all pretty used to the loops by now.
When we finished we sat down with them for a while. Paula kept reminding him to eat and continued with the rest of the day's business, but she thanked us profusely for taking care of the lock rather then leaving it to someone else. Really it was no big deal; it needed to be done. As rigid as her approach has always appeared to me, she bids farewell with such tenderness, hugging him and kissing his cheek before she leaves. "I love you Daddy", she says softly. For a moment the rigidness is gone and his loving daughter comforts him. She is a living angel. I wonder what stage of grief she may be experiencing. She seems to have accepted our daily reality, perhaps even more so than the rest of us, but I think she wants to believe that Dad is not so far into the disease as recent events would indicate.

My readers may notice I don't bring up Tom's care giving style often. Believe me, he plays a crucial part but because our visits never overlap I never have much of an opportunity to see how he handles situations. The one thing he has to offer that the rest of us do not is his stories about flying. I am sure he fills much of his visits with new tales of aerobatic competitions, planes he's planning to build and Danielle's budding interest in becoming a pilot. He also brings his wife and Danielle to visit and, as we all do, feeds dad and Buddy, and makes sure Dad takes his meds. While he, like all of us, considers this schedule an imposition, he soldiers on and has played an important role in filling in when one of us is unable to take a shift. Considering his long work hours, his wife's illness and the fact that he has a teenage daughter, I don't think anyone could really ask much more from his contribution.


Not to be overlooked, Bradley, my nephew also takes  at least one shift a week. As a grandchild, I think it is only fair that he takes the fewest shifts. He has a new wife and a toddler to think about and having just started his engineering career I think we all can agree that if Dad were in his right mind he would be completely opposed to Bradley being shouldered with the additional burden of caring for his aging grandfather. That he contributes at all is a gift for which we are all grateful...and he does a remarkable job with the few shifts he is allotted.

When it comes right down to the brass tacks of our little group of caregivers, everyone who helps is important and no matter how large or small the effort, anything that lightens the load is appreciated. Our system of visits is probably the only barrier between Dad and a group care facility. I don't know how much longer we can endure since the symptoms are becoming more difficult to deal with daily.

My formerly eloquent father tries so hard to talk intelligently but, especially in the past three months I have noticed him grasping for words, struggling over language like trying to ride a bike through gravel. He knows instinctively what he is trying to say but can't get the traction he needs when it comes to vocalizing his thoughts. He stammers, stumbles and slides around, sometimes giving up in mid sentence. When this happens I help him out as best I can but I know it hurts his pride. Sometimes it's best to let him drop his thought or help him by changing the subject entirely.

In addition to his speech problems his mobility is becoming alarmingly limited. Dad struggles to dig himself out of his chair when nature calls. I refuse to invade his privacy when he does this but as he shuffles to the bathroom I know I won't see him again for at least a half an hour, the implication being that he struggles just as much, if not more, using the facilities then he does getting in and out of his chair. Occasionally if it seems he has been gone for an unusually long time I will call out, "Dad? You okay in there?"  I hear some shuffling followed by an annoyed, "I'm coming, I'm coming..."
"Just making sure you didn't fall in", I tease.
"Wisass..." he replies with muffled humor.

Getting up and down is one thing, but when whoever has the morning shift finds him sitting in the same chair he was in when the last caregiver left the night before, wearing the same clothes, with no lights or TV on, we all know that more then likely he has not moved since his last visit. I have read enough about Alzheimer's to know that one of the advanced stages is such loss of mobility that the afflicted patient ends up confined to a bed or chair. I fear Dad has already chosen his spot. Keeping him moving, motivating him out of it is essential if we are to continue any reasonable quality of life.
....and that's where Buddy comes in.

(to be continued with Buddy, Dad's Hero)

The Balancing Act: When Life Happens (part 4)

We all were heartbroken when Jenny died. Certainly, it was inevitable. She had been abusing her body for years, ignoring her family's pleading with her to get help. I think the real mercy is that she never had an alcohol related accident and therefore didn't take anyone's life but her own. In the weeks that followed her passing, everyone had to not only deal with the grief but an extra caregiver shift each to cover Jenny's absence. None of us realized what a large contribution Jenny had been making, but we soon found out. Jenny had been bringing over her dog, Ego, to play with Dad's dog, Buddy. Ego was old and slow, but he loved to hang out with Dad and watch Buddy run. Sometimes while I was there Jenny would call to remind Dad that she was coming to visit. "My little Ego misses his grandpa," she would say. Dad would laugh and say, "Well, bring him on over! I wouldn't want him to be unhappy". I think she really knew how to make Dad feel important and he did the same for her. We could all really have taken a lesson from her...and now she was gone.
Paula and Hillary put together memorial packets to send to some of the relatives who lived out of state. They were not as elaborate as the photo albums we made following Mom's death but they filled in the gaps for our aunts, uncles and cousins who didn't know Jenny very well. What they did know wasn't particularly flattering; a re-education was necessary to appreciate the kind hearted human she was, loving and frail, in spite of her mask of defiance.
There were other things throwing off the family equilibrium. The recession had hit my home life hard. I graduated with my bachelor of science in Accounting two months before Dad retired. I had a strong GPA and thought after Dad's office closed I would find work quickly. If only it had been so easy. I immediately papered the metroplex with resumes upon graduation. Dad was prepared to let me go early if necessary but offered to keep me on even after the official closing to help with the task of tying up all the loose ends. It ended up taking five months after he shut the doors for good before I received a legitimate job offer. A large camera and lighting company needed an accounting specialist. The job was fun and moderately paced. I got my feet wet in basic accounting...very basic...but at least there was the additional excitement of working with a company directly involved in filming and lighting movies and TV series. A year later fate decided to change my course with the 2007 Writer's Guild Strike. With nothing being written, there was also nothing to film. My location saw its first layoffs in over twenty years. As I began seeing our company's locations closing and more and more layoffs, I decided the writing was on the wall and papered the metroplex again. This time I found a new job quickly through a placement agency as a staff accountant for a fastener company and put in my resignation at the job I really didn't want to leave.

Whether I was making the right decision in leaving or not, the new job was a miserable failure. Even the commute had been a nightmare, being over an hour each way. I had bitten off more then I could chew and the demands of the job were far more then my education and time could handle.  I was asked to resign and was given two weeks as a courtesy to find another position. As disappointing as it was in a way, it was also a relief.

Fortunately (sort of) I found, through the same placement firm, a position with a CPA that would start a week after my last day at the fastener company.  The CPA was a hard worker and believed in the rights of his clients, most of whom were lesbian, gay, and transsexual couples or business that supported the LGBT community. In my interview he asked me if I had any problem working with with gay and lesbian clients or their businesses. I said, "No. Will our clients care that I'm straight? It doesn't change how the books are balanced." He liked me immediately. The CPA knew my skills were very green but decided to give me a chance anyway because he appreciated my positive attitude. I quickly learned that my new employer had serious anger management issues and saw no problem with humiliating his staff publicly. He frequently screamed, threw things and threatened to fire the whole staff. The sad thing is that personally I liked him. He was extremely generous to his employees and passionate about providing the best service to his clients. He just was very unprofessional in his treatment of his staff and as far as I was concerned he didn't have time to train me fresh out of college when he already had a hard time hanging on to other, more experienced employees. After three months he came into my office and closed the door. "It's at least half my fault", he admitted. "I knew you were inexperienced but hired you because I just really liked you".  Truthfully, I felt it was way more then half his fault but it really didn't matter. He was very generous, giving me one month of severance pay and agreeing not to tarnish my employment record. Once again, although I was disappointed at having been asked to resign, I was also relieved. There had to be a better job out there...and there was.

Before my severance was completely used up I found a job with an oil and gas engineering company that I will call OGE. The online listing jumped out at me; the job requirements listed everything I had learned at my three jobs since graduation along with other general office skills for which I was more then qualified. I went in for the interview and found out that one of the controlling partners was also a patient of my father-in-law.  Their senior accountant, Lydia, was a very nice woman with whom I hit it off immediately.  Within a week I felt right at home and the other secondary bookkeeper, Krissy, was fun to work with. We had a lot in common and often chatted as we worked. It was a perfect fit...and, sadly, fate decided that this job wouldn't last either.

For some reason, large segments of OGE began resigning to join another company...one started by a former  partner of our company who had been forced to resign and sell back his shares. While this was going on, another employee filed a law suit claiming sexual harassment by two OGE executives. I don't know whether her allegations were true but that scandal threatened the very foundation of the company. Layoffs began and the company was reduced to a skeleton crew. At first, Krissy and I thought we would be spared. How could they run an accounting department with less then three people? We were very naive.

Only a year after I was hired, the two remaining executive partners and Lydia called me into the conference room. I braced myself, knowing what was coming.  They were very kind, offering me glowing letters of recommendation that they had already prepared. Unlike the other dismissals, this one got to me. I cried as they hugged me and assured me everything would work out. They allowed me to remain in the conference room to compose myself before I went back to clean out my desk. I emerged, wandered into my office, sat down and looked over at Krissy who was waiting anxiously to know what had happened. I looked at her, not yet ready to talk, and just waved "bye-bye". She gasped, started to cry, walked over and hugged me.
"This isn't fair. I'm so sorry. I'll miss you", she said.
"I'll miss you, too", I replied. "I'll keep in touch. Maybe we can still hang out".
We have kept in touch through Facebook and have met for drinks a few times. She even helped me search for another job.

While all of this was happening, our family was becoming more and more aware of Dad's memory issues and of Jenny's downward spiral. It really felt as though our world was crumbling around us. 

Between the recession and my overall inexperience, my employment record was taking a beating.  It was five more months before I would get another serious offer. During that time I did some temping to bring in whatever income I could. For the first time I had to collect unemployment. It was a real blow to my self esteem.That was when I had my epiphany about my overall health and began running. It provided a much needed boost to my confidence...much needed because there were many more blows to come.

To further complicate matters, Mike was having job issues of his own. What was once a successful management career at a large retail jewelry chain took a turn for the worse when he was transferred to a struggling store with a hostile crew. He did his best but was unable to turn the store around. His reputation as a miracle manager was bruised. The next store didn't fare any better, not because of his efforts or his crew but because of policy and industry changes and unfavorable demographics. Jewelry is a luxury and our damaged economy hurt the industry. Considering all of this, the company was looking for someone to blame and after the CEO was fired, store level managers became the scapegoats.

Facing possible termination Mike did something I never expected; he requested a demotion. Even his regional manager was stunned by his request. He waited until after talking to the RM to explain his decision to me. He tried very hard to spin it as a good thing, more possibility for commissions, better hours, etc. I knew what his real plan was: to re-establish himself as a master salesman and eventually work his way back into management. Although the foundation of this strategy was sound, things of this sort rarely work out as planned.

Managers and employees at his company were quitting left and right based on foundering confidence in the company's stability. He was promoted back into management but by then he was already looking to leave the company. Mike was secretly courted by another large jewelry retailer. They offered him immediate placement as a manager in a store close to home. It sounded like a dream opportunity so he accepted. Long hours and unreasonable demands quickly soured his feelings about his new job. Compounding the strain, he was having arthritis flare ups and the brutal 10 hour shifts spent mostly on his feet were excruciating. His doctor prescribed him a strong pain killer. It helped.

I knew Mike's new regional manager was trying to place blame for his own mistakes on Mike but was not aware how far his RM would go to cover his own ass. One morning, as I sat on our bed sending out resumes on our lap top, Mike came home. He had only been at work for an hour; this was strange. He had a funny expression on his face.
"Hi", I said suspiciously. "What are you doing home?"
"You know how I know my new pain med is working?" he asked.
"How?" I responded, wondering where this was going.
"Because, I'm not that upset that I was fired this morning", Mike replied. Although he was smiling, I could tell he was worried how I would react.
All I could think of was how many jobs I had lost in the past three years and how he never got angry or cast judgment on me when each one was yanked away.
"You hated that job!", I laughed and said, "Let's find you something better."
All of the anxiety disappeared from his face and he jumped onto the bed and kissed me. "I love you!" he said laughing with me. It would be okay. No matter what, it would be okay as long as we were in it together.

The next two jobs were no better, but like me, he just kept getting back on the horse. In the mean time I accepted the first job that came along, bookkeeping assistant at a family owned builders supply company that I will call BSC. In the beginning it was a good job, the people seemed nice in spite of the fact that the position for which I was hired had a high turnover rate.

About five months into the job I started getting clues about the reason for the disturbing turnover of my position. The owner's grandson, Todd, was a man about my age with a volatile temper and a tendency not only to lie in order to cover his own mistakes, but also to plant "evidence" in the bookkeepers' offices so he could also assign blame. His father, George, also had an explosive temper and turned a blind eye to his son's unprofessional behavior. Todd was the heir apparent and could do no wrong. Todd's uncle, Richard, was the head of the Accounting/Bookkeeping department and was well aware of Todd's ugly tricks. Although he did his best to protect me from his nephew he was unable to make the job more tolerable. Todd's Grandfather, Doug was the primary owner of the company. He was a kind and honest man who did his best to keep the peace, but at 87 years old, he was rarely around. It was very clear that Todd looked forward to Doug's passing, and since George was in very poor health, Todd thought  he could just act like he already owned the company. Working under him was hell and most days I came home on the verge of tears.

After the first nine months I wanted to quit. There were several times when I threatened to walk out and Richard talked me into just taking the rest of the day off. The only real reason I was staying was to build a longer employment history that didn't end in layoff or forced resignation.

There were only two times that I can honestly say BSC was good to me. First was when my father had his blood clot. BSC allowed me to take extended lunches in order to relieve whoever was watching him to run any errands or just get out of the house for a few minutes. Although Todd shot me some dirty looks and made some loud over-the-shoulder remarks at my expense, for the most part the company as a whole was understanding of the necessity for less rigid rules under the circumstances.

The second incident was only a month later when my in-laws, Nick and Louise, were in France on their annual extended vacation. We received an alarming e-mail from Nick telling us that Louise was in the hospital and her blood platelets were dangerously low, so low she was in serious danger of bleeding out. Mike, his brother, Brian, and his sister, April, all hopped the first flights available, fearing they would be too late to say goodbye. From my office I was allowed to close my door and chat with them online while they were in France. Again, I received nasty looks and comments from Todd but overall understanding from the rest of the company. Miraculously, Louise survived, and what looked like an emergency trip to say goodbye turned into a wonderful family vacation for all of them. Mike Skyped with me and the kids every night he was away and as the visit dragged on the chats became tearful wishes by all of us for him to be back home. Mike returned after 10 days, glad to be home and his mother well on the road to recovery. It was one of the toughest things we had gone through together with the best possible outcome.

If these crises were not enough, in October I injured my back lifting a mountain bike onto the bike rack of my car. Actually, that was just the climactic cause; with four bulging/herniated lumbar discs and one that was torn and leaking, I'm quite sure my injuries were caused by multiple times of me lifting things far heavier than I should have attempted. The damage to my lumbar discs caused sciatica in my right leg that traveled from my butt, down my hamstring and into my calf. I also had numbness in my toes. The pain was terrible and for a while on bad days I would use a cane to reduce the pressure on that leg. I would not only need steroid spinal injections but also physical therapy. The injections and PT were very expensive. For three months I had to live with the pain while we saved the money  for the treatment. When we finally could afford it, the treatment used up not only our savings but all of my sick time and personal days as well.

Todd took every opportunity to belittle my pain by mentioning one of our employees working with psoriatic arthritis and another who had recently undergone hip surgery, rolling his eyes and acting angry when I limped from the pain. He taunted me about it so much that I had a closed door meeting with Richard. "Other people's physical problems are beside the point", I said angrily. "If I need to show you the MRI, just let me know. I'm sure my doctor would also be more then willing to give you a letter explaining the extent of my back problems if I ask him to." Richard agreed that Todd was out of line and tried to get him to back off.  He was not successful.

Dealing with the treatment and the harassment while trying to keep up with Dad's schedule was almost impossible but we did our best. Mike and I tried very hard to minimize the problem around my family. It wasn't until after I completed my injections that they were aware of the problems we were having. They didn't need one more source of stress any more then we did. The injections and PT worked wonders and the pain was gone by the time Jenny passed away.

 I toughed it out for two years at BSC but as soon as that second anniversary passed I put my resume back online. An opportunity came up just days later. Before my first interview Mike talked to me very reasonably. "Baby, don't just jump on the first opportunity this time. Shop it a bit. Your current job is in no jeopardy. Find the right job for you."

Todd's harassment had escalated lately and I was pretty desperate to escape but I listened to Mike and resolved to take his advice. The first interview was with a well established CPA firm. I was interviewed by a partner of the firm but was surprised when he told me that they had chosen my resume not for their own firm but for a powerful client who wished to remain anonymous. The interview lasted five minutes and it went extremely well. The only question that made me uncomfortable was when the partner asked, "Why are you looking to leave your current job?" I decided that the best response under the circumstances was an honest one. "Hostile work environment", I said candidly. Upon hearing this response he looked up from his note pad and directly at me, I imagine to size up my response in relation to my body language. I'm not sure what he saw but I guess he was satisfied.
"I will send your resume to our client this afternoon", he told me. "I really think you would be an excellent fit for this office...but even if they decide to continue looking I know of several clients looking for your skill set. I think we could help you find a new position easily."

Hearing this convinced me that I could trust him and that he must have had some experience with a "hostile work environment" for him to sympathize with my dilemma so quickly.

The next day I received a call. It was the client's business partner, Lisa, asking if I would have time to come in for an interview the next day. I told told her if she could arrange the interview for around noon, I could definitely work it out. No problem; the interview was set.

As I drove to my interview I kept repeating to myself, "Don't leap at the job if it is offered. Take time to think it over."

I arrived at the beautiful old downtown skyscraper, a mere ten minutes from BSC and road the antique elevator to the 8th floor. The office door was wide open but I knocked anyway. A tall, older man walked out of one of the offices. He was wearing a t-shirt with a wrinkled button down shirt over it and comfortable, day-off jeans. Never had I been interviewed by someone dressed so casually...it actually made me feel quite at ease. He introduced himself as Allen Baxter, walked me into his office and offered me a chair. The office was large and impressive and it appeared Mr. Baxter had multiple irons in the fire. He held up my resume, looked it over and said, "Yes, I think you will fit in here quite nicely. How much do you need to join our group?"
I was stunned. I had never been asked such a question on my first interview with a potential employer. I told him what I currently made. "I would prefer a lateral move but what I really need is great insurance", I began and then briefly explained Allison's IGHD.
Mr. Baxter grabbed a notepad and started writing, "I can definitely meet your current salary. I think I will just add you to my insurance. I'm pretty sure they will waive the waiting period and start you immediately if I ask them to. Let me tell you a little about it. I shopped this insurance for myself. It is the best insurance available. It will be in addition to your salary." My mind was reeling. This job offer was essentially the same as a $10K raise! He then gave me a quick tour, showing me my office and pointing out "it's lovely view of the Bass Empire".

"Do you need to give two weeks notice?" he asked. I said I would prefer it if it was okay with him. "Okay", he replied, "I will have you start on the 17th. Will that work for you?" I nodded, still trying to wrap my mind around what was happening. "Very good! Let me get you one of my cards", Mr. Baxter produced a business card and shook my hand, "Welcome aboard,  Erin!"
"Thank you so much for this opportunity! It's a pleasure to meet you, Mr. Baxter."
I stepped out of the building and floated to my car, still not believing what had just happened. As soon as I got to my car I called Mike.
"Well", he asked. "How'd it go?"
"I got the job!" I said, still recovering from the vertigo of the experience.
"You told him you would think about it right?" Mike said, slightly panicked.
"No, I don't think Mr. Baxter hears 'no' very often", I said with a chuckle. "Believe me, you want me to take this job."
"Okay, convince me", Mike said.
"Same salary but insurance is fully paid...and it's 'rock star' insurance".
"HOLY SHIT, BABY!" All doubt was clearly gone. "That's awesome!"
"Gotta go quit my shitty job now!" I said, thoroughly elated. Free at last!!

 I was sorry to disappoint Richard with my resignation but I was very direct with my reasons for leaving. "Hostile work environment and unprofessional behavior on the executive level", I explained. During the two weeks that followed I barely saw Todd...in fact, he took great care to avoid me entirely. It is entirely possible that his fellow executives had a big pow wow and decided it was better to walk on eggshells around me in case I was planning to sue for harassment. The front office manager at one point took me aside and asked what I had said to be treated with such respect in my last two weeks. She apparently had never seen anything like it before.  I told her about my resignation letter and she was floored. Apparently, none of my predecessors had had the nerve to put the truth in their resignation and the fact that I did had spooked the owners. I was delighted that my parting gift to Todd and his negligent family was a little nail biting. It was the least I could do after all they had done for me.

Life at the Baxter Companies is another world compared to BSC. The first few weeks felt like I was on vacation. Also, the work is more interesting and I am much more involved in the accounting processes then I was at my previous positions. My co-workers are both single mothers and if there is one thing they are flexible about it is the high priority my girls take in my life. Mr. Baxter and Lisa frequently travel so it is often just me and Deanna, the primary bookkeeper, attending to the daily office operations. Whenever Mr. Baxter comes back from one of his trips, he is always happy to see us, often giving us quick, fatherly hugs and saying, "Nice to see you again", before getting back to business. However hard life was before, Mr. Baxter and my coworkers, Lisa and Deanna, are the nicest people in the whole world. I can't imagine being happier at a job them I am now; this job was worth the wait.

I don't remember how it began but early in my employment with the Baxter Companies, Deanna and I found we had a lot in common, having both been through difficult divorces, single parenthood, alcoholism of a loved one, and aging parents. After a while I began talking to her about Alzheimer's and it's progressive effect on Dad. She was such a good listener that I wasn't sure if she was really interested or if she was just being nice. One day I started telling her about one of Dad's loops and I stopped, "I'm sorry to keep dumping all of this on you."
"You're not dumping on me", she protested, "I love hearing stories about your Dad! He's so funny, I don't even know him and I just love him." She really wasn't just being nice. She was sincerely interested.

Shortly after this she told me about a book she had read that was written by a caregiver of a man with Alzheimer's. As she talked about it I found so many things to which I could relate. I had not only gained a confidante but a new perspective on the disease that was causing me and my family so much stress. These conversations were crucial because they brought me to a change in perspective about how I was dealing with dad. I was too impatient, too redundant, not creative enough.  I could and should do so much more.
Maybe I could not change the path Dad was on, but I could change my approach and try new things. It would all work to make our journey more tolerable...and most importantly, I could actually use the disease as a tool to be closer to Dad. The beauty of Alzheimer's, if you can see it as a positive, is that even if you screw up, become aggravated,  have an argument or storm out, the next day you have a clean slate. Second chances may not be infinite but they will be plentiful and you can learn something and become a better caregiver and even a better person with each one...and you will feel better about yourself and the care you are providing for your loved one, too.

The Balancing Act: Losing Jenny (part 3)

It occurred to me following my last post that my father's story is so incredible that people might find it hard to swallow. I told Mike, "People will never believe one person accomplished all of this in his lifetime. No one could possibly have the energy or ability to do all of this." We both laughed as we discussed it. Mike, having grown up three houses down from me watched as all of this took place. He witnessed airplanes taking shape in our driveway, the various birds of prey tethered to perches in our front yard, and frequently waved to my mother when he walked to and from school as she worked in our garden and helped Dad with his many projects. "Yes", he agreed, "but it happened exactly like that. Just tell it as it is." The more I have thought about it, the greater my resolve to honor Dad's efforts. He is an amazing man and he deserves to be remembered for everything he was and is. He has earned the right to have his story told.

After the blood clot in Dad's leg and his slow recovery it took a while for us to get our footing as caregivers. Jenny, Tom and I had not been aware of how much time Hillary and Paula were spending with Dad following the close of his business and his escalating health and memory problems. All we knew for sure was Dad's memory was getting worse and he required at least one visitor a day to check on him. Following his stay at the hospital and our subsequent round the clock caregiver schedule I don't think Jenny, Tom or I really thought this would continue indefinitely. Deep down I think we expected it to be a temporary thing  and eventually we could go back to the weekly lunch or dinner visit. That would change with a phone call from Paula. I am only guessing that she approached all of us this way but I remember answering my cell at work. "Erin", she explained, "You know he gets very disappointed when you leave right after dinner". Actually, I did not know that at all. "Okay, I will stay and visit longer", I promised.

At the time I was in unusually good shape and had recently run my first 5K. This is significant because throughout my school years, my parents never encouraged me to participate in sports. I am not sure why that was but have often thought it may have been because I was so tiny. Perhaps they thought I would get trampled by bigger and stronger kids. At age 40 I woke up one day and realized that I really had no idea how fit I could actually be. I began to walk, then to run, then to pursue overall fitness. It was a wonderful outlet and, I like to think, a healthy example for my kids. In a way Dad's health issues occurred at the best possible time for me, in that I was more physically capable of dealing with my new role as part time caregiver.

The next time I came over I showed up an hour early with my dog, Marty. I entered through the side door as always, having just come from a run. Paula was there on the back porch with Dad about to take a walk. I think she was skeptical (maybe just hopeful) that we would take her seriously about Dad needing longer visits. Her reaction to my early appearance was borderline ecstatic.

"THERE'S my wonderful sister who I love so very much!" she gushed. I knew her reaction was partially surprise that I was there to relieve her so early.

She left and I continued with the walk around the back yard starting with a precarious dismount from the porch. He was still unsteady on his feet and as he stepped down into the grass it was mostly gravity doing the work. "TIMBEEEER!!" I joked as I grabbed his arm and helped him get his footing. "Wiseass!" he said with a chuckle. We walked around, I told him about my day, he talked about what he remembered about his. Then we went in and ate dinner. This was how most visits went. Nothing too creative. A walk, general conversation, a meal and maybe a TV show.

The polar opposite of my increased health was Jenny's failing health. Jenny had long had a problem with alcoholism. Jenny was born lucky in almost every way: beautiful, smart, funny and tough. In my opinion these assets may have also been her downfall. With everything going for her I think she felt invincible. She could do anything...and get away with anything. Jenny had begun drinking in high school. She would sneak out and go to clubs at night. The door men would let her in and men bought her drinks. She began experiencing blackouts before she was 20.

We had tried everything to help her change but her stubborn nature prevented any permanent recovery. I can remember so many fights between Jenny and my parents. They begged her repeatedly to stop drinking, making multiple offers of help. She moved back home between abusive boyfriends, usually with the promise to turn over a new leaf.  Each time I think she really intended to follow through with her promises.  Invariably, though, she would backslide and make some type of explosive exit. I remember One time in particular when I was in my early 20's Jenny was leaving the house, my mother in hot pursuit. Jenny was smashed and Mom, who had discovered a bottle of Tanqueray in her purse, was trying to wrestle it away from her. An ugly tug of war ensued, ending with Jenny jumping in her car and speeding away. She would later call me and angrily tell me her point of view. "Did you see how mean she looked?!" Jenny asked me as if I had not witnessed the whole thing. "All she wanted was to take that bottle!"
"Well...yeah." I replied. She really did not get it. To her, Mom was just trying to take away something she loved purely to be mean...not because Mom loved her.

The years went by. Citations, lost jobs, offers of help followed by alienation. Jenny could not break her self destructive pattern.  She made her last genuine effort to clean herself up shortly after Mom's death. On her birthday that year Hillary bought her a button that read "I survived damn near EVERYTHING!" We all thought it was appropriate and funny. She certainly had the attitude of a survivor.
Dad could tell she was really trying and knowing she was struggling financially and having car trouble, he decided to get her a gift. He bought her a little used sports car in her favorite color, yellow. As cars go it was not expensive and it was in excellent condition. He invited Hillary and Paula to help him spring the surprise on Jenny.  He had Paula park the car in back of the car port. That area was in clear view from Dad's back yard but completely hidden if she entered from the front or side of the house. They invited Jenny into the back yard on a ruse to plan "where to put a water fountain".
"I think you should put it in the center of the yard", Paula improvised. "That way you could see it from here..."she said standing at one end of the porch, the car just out of view.
"...and you could also see it from here..." Hillary said moving Jenny closer to her surprise.
"...and from here, too." Paula said moving her in full view.
Jenny was confused. "Well, yeah, you could see it basically from anywh..." she started to say but then noticed the car.
"Dad, did you get a new car?" asked Paula.
"It's not my car", Dad said.
"It's not my car", Hillary added.
"It's not my car", Paula smiled.
"Well, it's not MY car", Jenny said.
"YES, IT IS!!!" they all said in unison. It's safe to say Jenny was blown away and deeply moved by this gift. She called it her little lemonade and took perfect care of it.

Although, she appreciated and would never forget this gesture, the beginning of the end was near. A few months later Jenny was in the hospital. The doctors doubted she would be coming out. Her body could only take the constant flood of poison she was pouring into it for so long. Hillary was usually the one who would pull her up and help her back on her feet. She had seen her recover time and time again, each time coming closer and closer to death. Hillary asked us all to visit Jenny, no matter how angry we might be with her. I went to the hospital on my lunch break. When I arrived at her room I looked through the window. At first all I could do was stand there and look in at her. She was so yellow and bloated, trapped in her self created prison. I didn't know what to say to her. Then she saw me standing outside her room. I have often wondered what she thought when she saw her little sister staring in at her with a mixture of worry and disgust. I walked in and gave her a kiss. "How ya doin'?" I asked lamely.
"The doctors think I'm dying...like hell!" she said defiantly.
Her reddish brown hair was oily and matted under her head. I offered to brush it for her and dug a brush and a scrunchy out of my purse. She thanked me and I managed to get it into a pathetic topknot. The visit ended as awkwardly as it began.
"Well I have to get back to work. Don't die." I said.
"I won't. Thank you for coming, Erin. Love you."
I gave her a kiss and left.  "I'm mad at you, but love you, too."
As I walked to the crossing in front of the parking garage I saw a man on a motorcycle cross in front of me. He lifted his visor. It was Tom. "Need a lift?" he asked.  "Sure do!" I said. It was a long way to my car and I appreciated the ride. As he dropped me off I thanked him.
"No prob", he said and paused. "This sucks."
"Yeah, sucks big. I didn't even know what to say to her."
"All we can do is hold her hand. The rest is up to her", he said. He was right.

When Jenny bounced back against all odds, Hillary told me that she really believed Jenny had a superhuman physiology. Nothing could kill her. That hospital visit scared Jenny straight for a while...about six months in fact. As always she began to backslide again and shortly after Dad's blood clot she was admitted to the hospital again, her abdomen so bloated that she looked pregnant. Her liver could not filter the alcohol anymore. Again the doctors told her she had to stop drinking or she would die. I think, though, she had really reached the point of no return. Without the alcohol that was killing her she would go into delirium tremors (DTs) and seizures which could also kill her. There was no way out. I did not visit her in the hospital this time, feeling that  her inability to control her drinking was now causing unnecessary stress to her family, particularly Dad in his weakened state. It was October and on my day off Mike and I took the girls to the Texas State Fair. I was determined to have a good time with my family and not think about Alzheimer's, alcoholism or hospitals for just one day...but that was not in the cards.  I was watching Allison on a bungee jump ride. The line had been long and tiresome and she was finally hooked up. I had my phone camera poised to catch her moment of fun when my phone began to ring.  It was Jenny.
"Erin, why is everyone so mad at me? I'm sick, I can't help it!" she whined.
"You CAN help it, you just DON'T!" I said angrily.
"But it's easier for you. You aren't sick. You don't know how hard it is", she insisted.
"Are you serious??? WE don't know how hard it is???" I asked loudly,"We're the one's having to take up the slack when you put yourself in the hospital. Don't you ever think about what you are doing to Dad? What it would do to him if one of his children died? Clean yourself up before it's too late. I don't even want to talk to you right now. You're a loser and I hate what you are doing to our family!"
"I know", she said sheepishly, "I'm sorry".
"Yes, you are", I fired at her and hung up.
Allison's ride was over and I had missed it.I was livid. Mike had come to the rescue and took pictures with his phone, but I didn't know this until later. I called Paula later and told her what happened. She said, "She needed to hear that. Jenny called me after she talked to you and asked if she was really hurting Dad. I told her 'Yeah, Jen. We really need you and you're not here'".

Her condition continued to deteriorate over the next four months. We all watched helplessly as her periods of  resolve grew shorter and shorter. I was angry with her for one of her binges that landed her in the hospital and I reminded Hillary of the birthday button saying, "She's like a cockroach! She does something that almost kills her and she comes back stronger and more disgusting then ever!" It was a cruel analogy but Hillary understood what I meant. It was exhausting to hear her swan song over and over like a broken record only to have her bounce back and have to go through it all over again.

As sick as she was during those last few months, Jenny made a heroic effort to keep up with the weekly visitation schedule. She would come over and bring something wonderful from the deli where she worked or make something from whatever she found in Dad's fridge. Her visits were filled with lively stories of the rundown neighborhood where she lived leaving Dad in stitches. Jenny's delivery of the comical side of life in the 'hood was flawless. Whatever her faults, Jenny had such a good heart. In one of the last pictures I took of Jenny she is sitting on Dad's lap and wearing a Santa hat with the words "I've been good!" printed across it. I told her it was false advertising but it really is a cute picture.

Jenny's declining condition didn't completely eclipse the next catastrophe. February brought a rare snow storm to North Central Texas. Hillary went over and covered Dad's outside pipes and turned the inside faucets on to a trickle. When the storm hit most of us were iced in for several days and we had to rely on phone visits with Dad and hope he would not ignore our reminders to take his meds. The roads finally cleared, I had one of the first visits. I came in through the carport entry as usual but noticed a constant flow of water from the roof of the garage and carport. As dad opened the door to greet me I asked where all the water was coming from. "Oh, that's just the snow melting off the roof", he said. I didn't have that much experience with snow runoff and took his word for it.

The next time I came over, however I changed my mind. The same continuous flow of water was splashing down from the roof but there was no snow left. Once again Dad came out to greet me and I asked, "Dad, where's all that water coming from?" "Oh, that's probably just runoff from the snow", he said again. "Not possible, Dad", I said beginning to feel alarmed. "Is your workshop unlocked?"

I cautiously opened the workshop door, braced for what I might see. Nothing could have prepared me for the catastrophe on the other side. A water pipe in the ceiling had burst in Dad's workshop causing the ceiling to buckle and collapse. Soggy bits of drywall covered all of dad's tools, expensive equipment, and the skeleton fuselage of his kit plane. The floor was completely submerged in several inches of water as the pipe continued to flood the room. I closed the door and said, "Believe me, Dad, you don't want to look." I began making phone calls, first to Paula who told me to call a plumber and that she would be right over. I called two plumbers trying to find the one who could get there the soonest. I then took a short video and sent it to all of my siblings. "This is too painful to believe", I captioned. Within 15 minutes all of us were standing in my dad's kitchen having surveyed the damage. It really was unnecessary to have all of us there but I think because we all knew what the loss of his workshop would mean to Dad, we felt obligated to come over and make whatever effort we could to try to save it.

One by one they each went and saw the disaster for themselves. We stood for a few minutes not knowing quite what would be appropriate to say. Tom finally summed up what we were all thinking, "But, other then THAT, how did you like the play, Mrs. Lincoln?" We all laughed. Yes, it was like that.

The plumber arrived and was able to shut off the water to the workshop. It was decided that an additional shut off valve would be added in the event of freezing weather to prevent such a problem from happening again.

Our cleanup and salvage job took weeks. We gave up several weekend afternoons sifting through the rust and disintegrated drywall trying to find anything that was worth rescuing. So many tools and parts had to be thrown away. I was unfamiliar with many of the tools and kept asking Tom, "What's this?"
"That's a band saw blade."
"What's this?"
"That's a cleco."
"What's this?"
"That's a rusted piece o' crap."
After a while he put his rust covered hands on his hips and said, "Let's just throw most of it away. It's all just rusted crap. None of these boxes have anything irreplaceable. The only things that are irreplaceable are the big machines and they're covered by insurance." He was right. For all of the hours we spent pulling rusty odds and ends out of the workshop, not much was worth salvaging. After that Dad spent very little time in there anyway.

During February it really looked like Jenny was starting to bounce back. I came over the Saturday after the workshop disaster and she was still there with her dog, telling dad another story from the hood. Her abdominal swelling had gone down considerably. Perhaps Hillary was right. Jenny was superhuman. She just might make it.
A week later, though, she was back in the hospital. Hillary sent me a message asking me to visit her. I did but decided not to bring Mike or the girls. She was not in ICU and they didn't need to see this. Her belly was again bloated with fluid. Would this ever end?

Again she rallied, just enough to attend Kelly's birthday party. Jenny and Kelly always had a special relationship and I was glad she was well enough to be there to celebrate with her niece. As always I planned her party for two weekends before her actual birthday, because I was not sure when my in-laws would be traveling and knew they would want to be there to celebrate with her.  Jenny and Dad were not able to drive themselves so Paula picked them up and they all came together. Jenny was still so swollen all the way to her ankles and her eyes were yellow. Within a week Jenny would enter the hospital for the last time.

Deep down I think we all knew it was the end...all of us except Jenny, that is. Hillary, who had not only been Jenny's sister but her surrogate mother her entire adult life, came to visit her with flowers. Jenny looked at her as if she were crazy. What were the flowers for? She would be out in a few days, like always, right? No, she didn't want a priest. She wasn't dying, why would she want a priest? Actually, even if she believed was dying she wouldn't have wanted a priest so that was a moot point. Eventually she lost consciousness and we began the vigil. Her common law husband, Joey, stayed by her side for most of her final battle, much to Dad's dismay. Dad was not fond of this person whom he felt was, at least in part, responsible for Jenny's last year of backsliding. While I understand why Dad felt that way, in the end there was nothing to be gained from pointing fingers.
Kelly was very upset that week. "I'll never forgive her if she dies on my birthday", she said angrily. I think, like all of us, she would have forgiven Jenny, but her anger was legitimate.  Kelly's birthday passed but it was definitely close. In her last two days we all kept watch in turns, ready for the final call. Her best friend from high school, Gina, also stayed with us. The doctors finally told us that we needed to either turn off the machines and let her go or her lungs could explode from the pressure of being on a ventilator for an extended period of time.  We decided it was time. The circulation in her fingers and toes had been compromised for days. She was no longer recognizable as Jenny. Her skin was a burnt orange color from all of the blood and waste her body could not flush out.
We gathered around her as we had with mom. This was different, though. Joey could not watch and left the hospital earlier that day.  Gina and Hillary took the places of honor at her head. The room was quiet except the heart monitor. Hillary broke the silence, observing, "Is it just me or does her heart beat seem stronger now?"
"No, that's our Jenny. She's fighting it. No one's going to tell her when to go", I said. Everyone smiled. It was true. That would be just like her.
"That's right, Jen",  Jack said, "You fight it".
A few more minutes went by and Gina said, "Maybe she needs some music?" We all agreed that might help...but what? All of us started looking through our Ipods, smartphones and other devices. "How about 'Spirit in the Sky'?" Gina offered. She turned it on and tossed her Ipod gently on top of the blanket, satisfied with her selection. "Okay, Jenny...go find your mother", Gina instructed. There was something so casual about how she did it and her particular song choice that most of us had to keep from cracking a smile. Paula would later tell me that Hillary found it a bit disturbing, a little too upbeat. Personally, though, I think Jenny would have loved it. That's why Gina was her best friend. She had a way of reading Jenny like no one else ever could. I can imagine our stubborn Jenny refusing to leave, then hearing that song and bopping her way into the next world. She took the cue and danced away, her monitor letting us know when she left.

It was strange. I was fine; no urge to cry.  Was I stone? I mentioned it to Mike and he speculated that it had not hit me yet. We arrived home, took off our coats and acted as if nothing had happened. Mike  began fiddling with his fish tank so I went back to my computer and opened Facebook...and there she was. Gina had posted Jenny's senior picture. It was, in my opinion, the most beautiful picture that was ever taken of her. That was all it took. I broke. Mike rushed into the bedroom, alarmed to have heard my hysterical sobbing from three rooms away.
"How can someone take THAT", I said, gesturing to the picture, "and turn it into the thing we saw in the bed tonight?? How can anyone throw away so much for a bottle???" I demanded. There were no answers. She could never tell us why and all of the love in the world would never bring her back.

A few days later we had a memorial service. So many beautiful flower arrangements arrived at the facility; friends, family, co-workers, acquaintances and even former lovers all showing their love for Jenny. I made red and yellow ribbons for people to wear on their lapels in Jenny's honor. Allison assigned herself to pass them out to arriving guests. My nephew, Bradley, made a slideshow of her life. It was a beautiful thing for people to watch as they made their way in. We requested that the officiant be non-religious. I am not sure how, but that message was lost and he rained hellfire and brimstone at us. He also spoke about how Jenny knew God loved her and in the end accepted his saving grace. We all kind of looked at each other quizzically. Were we at the wrong memorial service? I know that my entire row was biting our their tongues to keep from laughing. I never thought a sermon could be so freaking funny!

 Tom spoke, starting with the last text that Jenny sent him and how she never quite mastered technology but, oh, how she tried. His speech was a wonderful tribute to her.  Then Gina spoke...best part of the memorial by far. She spoke about sneaking into clubs in their high school days and what a hell raiser Jenny was. Gina also spoke about her final year of life when Jenny had imbibed a bit much and called her for a ride home. "Don't tell, Hillary, please. I'll never hear the end of it!" Still trying to get away with everything to the very end. Finally Gina said, "With all that happened I will always remember her as the hilarious girl we all loved. I will remember her as we all called her in high school: Jenny-Damn-O'Houlihan!" The room erupted in applause. Yes, that is definitely how she would want to be remembered.

(to be continued)

Why this picture?

I wonder if people look at this photo and wonder why I chose it. When searching for an icon for this blog I decided not to use a picture of myself or my father because I did not want to distract from the purpose of the blog. We could be any family, anywhere. Faces are not important to the story. Instead I wanted the picture to be a symbol of this illness. This is my cat, Squeakie. When this picture was taken my daughter, Allison, was 3 years old. Allison had put a hula hoop on the ground and inside it she put a miniature skateboard. On the skateboard is a tube of toothpaste and an electric toothbrush. That in itself was odd enough for me to want to take a picture. Then Squeakie wandered into the shot, looked at the skateboard setup and then looked up at me as if to say, "I don't get it". When looking for a metaphor for Alzheimer’s I felt this picture pretty much nailed it. A confused cat looking for an explanation for that which makes no sense at all. (Now back to our regular programming...)