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)
Monday, October 28, 2013
Wednesday, October 23, 2013
Why this picture?
Monday, October 21, 2013
The Balancing Act: Superman (part 2)
In order to understand the kind of person my Dad is today, you must understand the kind of person he has been since early childhood. He has always been a very headstrong, driven individual, focused on making his dreams a reality...and no dream was too unrealistic to consider. When dad was 5 years old his hero was Superman. He loved pretending to be Superman so much that my grandmother made him a Superman suit out of long johns and extra fabric. Dad was so excited he donned his new suit and convinced himself he was now capable of breaking through walls. He then proceeded to knock himself unconscious...TWICE...trying to burst through the side of the house. Did that curb his determination? Not in the least. When he came to, he proceeded to scold my grandmother! She didn't make the suit right...the cape shouldn't be tied on, it should be sewn to the shoulders of the suit. She humored him and corrected her "mistake"....after which he decided it was time for his first Superman flight. He got on a ladder and jumped off the roof....fortunately one story. It really is a wonder he survived childhood with his determination and stubborn streak. Gramma must have been a very patient woman, and I know he adored her because he frequently credited her as the source of his intellect.
By the time he was 12 he already knew what he wanted in life and made a list. I remember him telling me about the list and a few things that were on it:
Become a Doctor
Build and Fly Airplanes
Become a Falconer
Get married and have children
Dad excelled at everything. No subject seemed to challenge him and he rarely did homework but he aced nearly every test. He looked a lot like a young Elvis Presley, handsome, tall and fine featured. Dad also was an admirable athlete, focused mostly on football and boxing. He briefly fought professionally using an alias, Bobby Hogan, but decided his brain was too valuable to allow it to be destroyed with head shots. Dad also was a wonderful artist and did the sketch that became the cover of his high school year book.
My grand parents did not approve of his plans for the future, and made it very clear that they would not be paying for med school. True to form, he did not take this news as anything more then a bump in the road. His college career was so impressive that he was accepted to med school early, having never actually received his bachelor's degree. My mom and dad both worked long hours while having children and putting dad through med school. It all paid off in the long run. Dad became a plastic and reconstructive surgeon just as he planned.
By the time I was born, Dad was building his first biplane. The whole family was involved in it's construction. As a toddler I would wander through his workshop stealing handfuls of clecos (temporary metal fasteners commonly used in the construction and repair of aircraft), earning myself the nickname "The Cleco Kid". When it was finally complete, I can recall accompanying dad to the hanger and watching him prop start his plane and jump in. It was quite a sight. He would grab the upper blade with both hands, kick one leg up for extra torque and then yank the propeller down, jumping clear as the engine sputtered and then screamed to a start.. Even then I remember being afraid he would be hit by the spinning propeller when it started...but he always jumped safely out of the way and nimbly into the cockpit. He would sometimes take me for rides down the runway although I don't recall him ever actually taking me up. Even so, the memory has stayed with me as a unique part of my childhood.
After the biplane he built a few experimental aircraft, most of which never flew but were the source of some truly spectacular crashes. One of these crashes made a gash in dad's hand that required stitches. I have a vivid memory of him sitting at the kitchen table sewing his own hand closed. To paraphrase Dennis Leary, all of us kids looked at each other as if to say, "That's it. We can never cry again."
He opened a private plastic surgical practice in the early '70s and as his practice took off, he used the money to shower mom with designer gowns and jewelry and to indulge in his own very expensive hobbies. We moved into a large house, almost a mansion, when I was 3 years old. Since I have very little memory of life before that house, it seemed completely normal to me. I always found it strange that one of my friends refused to spend the night in my house for fear that it would be haunted. When you are in grade school, I guess all big houses are mansions and of course all mansions are haunted. It never occurred to me that we were well off since my parents were completely lacking in pretension. Dad never golfed or wore fancy clothes. Mom did all her own gardening, shopped for our school clothes at K-mart, clipped coupons and made a lot of the drapery and decor in our house by hand. They briefly belonged to a country club, I think because that's what doctors and their wives were supposed to do. My mom enjoyed playing tennis; she was actually quite good. We kids often went swimming in the club pool. They ended their membership after a few years, though. My parents just weren't that social. The few things we did at the country club could be done just as easily at a public facility at far less expense. It really was a waste of money from their point of view.
It was not until I was 14 that I realized how wealthy my parents might actually be. I was coming home after a speech tournament and was dropped off at my house by another parent in a carload of my school mates. The kids all stared out the car window. "Is THAT your HOUSE???" "Whoa! Erin's RICH!!", they started exclaiming. "Nah, I'm not rich...", I started to say. Then for the first time I looked objectively at my house by comparison to my friends' homes and it hit me. "Holy shit! I AM rich!" I thought. "Why the hell are we shopping at K-mart???" There was actually a simple explanation: my mom grew up in the ghetto, one of nine children born to an immigrant couple from Czechoslovakia. As such, she was extremely frugal...dad used to say it was to the point of neurosis. She absolutely could not throw away anything, particularly food. She grew up scraping for every meal, washing off discarded candy she found in the street. Nothing was ever wasted and there were harsh punishments for not finishing a meal. As a result, her habits were so ingrained in who she was that Mom never fully adjusted to having money to spare.
Sometimes her inability to throw things away could be quite comical. Once I opened the refrigerator to get a drink and there on one of the shelves was a little plastic scooper Mom had saved from a can of powdered drink mix. Inside the little scooper was some water and two little pieces of a green bean. The two pieces together didn't even add up to a whole bean! I was laughing so hard that when Dad came into the kitchen with mom and asked what was so funny all I could do was point to the little scooper. Dad looked at it, looked at mom, looked at me, then picked it up and handed it to me with two words, "Save her!"
It was this unusual pair that built a wonderful and richly fulfilling life together: Dad with his exciting and costly hobbies and mom with her creative and frugal ones. Her common sense brought balance to his whimsical impulses. They were truly a match made in heaven.
While I was still in grade school Dad began his next hobby: falconry. He started with one bird, a great horned owl who he named Eddie after Eddie Cantor. Eddie lived in our garage. Orphaned as a baby, dad adopted him while he still had his downy feathers. As he matured his markings were beautiful with a full white beard surrounded by black and brown feathers. Our garage was connected to the house by a long hall that led directly to my parents bedroom and adjoined a shorter hall leading to the living room. Dad delighted in leaving the door to the hallway opened, knowing his feathered friend would be unable to resist the urge to venture out to look for him. Dad would wait in a chair in the living room with a clear view of the place where the two hallways connected. Eddie would come trotting down the hall and peek around the corner, focusing his large, yellow eyes as he did so. "Eddie!" Dad would jokingly scold him,"What are you doing, son?? Get back in the garage!" But Eddie would just run into my parents' bedroom, against my mother's loud protests, take off and land on a lampshade, poking holes through the fabric. Dad allowed all of this because he thought it was hilarious and not-so-secretly because he wanted to drive my mother crazy. It worked like a charm.
Dad continued this hobby for over a decade. When my friends gave their parents directions to my house they described it as "the big corner house with the eagle/hawk/owl in the yard...no, not a statue, a REAL one!" Different birds came and went, their stays ranging from a few days to years. Dad usually had more then one bird of prey at any given time. Usually when birds were brought to our home it was because they had been shot or orphaned. Some tragedy would put them in our custody and dad would rehabilitate these birds both surgically and through daily care. He worked with wild life organizations to help repopulate endangered raptors and protect them from hunters and others who would do them harm. Much of his disposable income went toward the birds. Eventually his operation became too draining and he had to re-home the birds in his care. It was time to move on to less taxing and less expensive hobbies.
By the time I reached my thirties, Dad had accomplished everything on his original list of goals and so much more. He is a shining example of what we can accomplish if we put our minds to it, of how to push past any challenges undaunted and succeed at anything. He is a hero, a scholar, a dreamer, and a teacher...the greatest triumph of the human spirit that I will ever have the honor to witness first hand.
When Dad was nearing retirement they decided to build their last house. They actually built it around an existing house on a large piece of land. Mom did most of the designing of the house, making sure a special study was built just for Dad and his airplanes and models. What would normally be the garage was connected to the house with a car port in between. The garage was his workshop, filled with works in progress, tools and equipment. I don't know everything he had planned for his retirement, but I know he didn't plan on doing it without Mom. He saw his study and workshop as tangible manifests of her love for him. Those rooms are the root of his attachment to this house. She was his other half and her death was an unexpected and devastating loss.
Considering all of this, we started his journey through Alzheimer's with a decidedly stubborn and independent patient. Alzheimer's patients often become more stubborn and outspoken as the disease progresses. For many caregivers the challenge is easing their loved ones into a life in which control is slowly taken away. We were not allowed to gradually become accustomed to the stubbornness that develops with the advancement of the illness...we started there from day one.
Maintaining balance and weathering the daily storms can be a real balancing act. The most important thing has been to keep Dad safe while allowing him his dignity. He has fought us tooth and nail on nearly every issue but, in spite of everything, he loves us and at least for now knows we are looking out for him.
(to be continued)
By the time he was 12 he already knew what he wanted in life and made a list. I remember him telling me about the list and a few things that were on it:
Become a Doctor
Build and Fly Airplanes
Become a Falconer
Get married and have children
Dad excelled at everything. No subject seemed to challenge him and he rarely did homework but he aced nearly every test. He looked a lot like a young Elvis Presley, handsome, tall and fine featured. Dad also was an admirable athlete, focused mostly on football and boxing. He briefly fought professionally using an alias, Bobby Hogan, but decided his brain was too valuable to allow it to be destroyed with head shots. Dad also was a wonderful artist and did the sketch that became the cover of his high school year book.
My grand parents did not approve of his plans for the future, and made it very clear that they would not be paying for med school. True to form, he did not take this news as anything more then a bump in the road. His college career was so impressive that he was accepted to med school early, having never actually received his bachelor's degree. My mom and dad both worked long hours while having children and putting dad through med school. It all paid off in the long run. Dad became a plastic and reconstructive surgeon just as he planned.
By the time I was born, Dad was building his first biplane. The whole family was involved in it's construction. As a toddler I would wander through his workshop stealing handfuls of clecos (temporary metal fasteners commonly used in the construction and repair of aircraft), earning myself the nickname "The Cleco Kid". When it was finally complete, I can recall accompanying dad to the hanger and watching him prop start his plane and jump in. It was quite a sight. He would grab the upper blade with both hands, kick one leg up for extra torque and then yank the propeller down, jumping clear as the engine sputtered and then screamed to a start.. Even then I remember being afraid he would be hit by the spinning propeller when it started...but he always jumped safely out of the way and nimbly into the cockpit. He would sometimes take me for rides down the runway although I don't recall him ever actually taking me up. Even so, the memory has stayed with me as a unique part of my childhood.
After the biplane he built a few experimental aircraft, most of which never flew but were the source of some truly spectacular crashes. One of these crashes made a gash in dad's hand that required stitches. I have a vivid memory of him sitting at the kitchen table sewing his own hand closed. To paraphrase Dennis Leary, all of us kids looked at each other as if to say, "That's it. We can never cry again."
He opened a private plastic surgical practice in the early '70s and as his practice took off, he used the money to shower mom with designer gowns and jewelry and to indulge in his own very expensive hobbies. We moved into a large house, almost a mansion, when I was 3 years old. Since I have very little memory of life before that house, it seemed completely normal to me. I always found it strange that one of my friends refused to spend the night in my house for fear that it would be haunted. When you are in grade school, I guess all big houses are mansions and of course all mansions are haunted. It never occurred to me that we were well off since my parents were completely lacking in pretension. Dad never golfed or wore fancy clothes. Mom did all her own gardening, shopped for our school clothes at K-mart, clipped coupons and made a lot of the drapery and decor in our house by hand. They briefly belonged to a country club, I think because that's what doctors and their wives were supposed to do. My mom enjoyed playing tennis; she was actually quite good. We kids often went swimming in the club pool. They ended their membership after a few years, though. My parents just weren't that social. The few things we did at the country club could be done just as easily at a public facility at far less expense. It really was a waste of money from their point of view.
It was not until I was 14 that I realized how wealthy my parents might actually be. I was coming home after a speech tournament and was dropped off at my house by another parent in a carload of my school mates. The kids all stared out the car window. "Is THAT your HOUSE???" "Whoa! Erin's RICH!!", they started exclaiming. "Nah, I'm not rich...", I started to say. Then for the first time I looked objectively at my house by comparison to my friends' homes and it hit me. "Holy shit! I AM rich!" I thought. "Why the hell are we shopping at K-mart???" There was actually a simple explanation: my mom grew up in the ghetto, one of nine children born to an immigrant couple from Czechoslovakia. As such, she was extremely frugal...dad used to say it was to the point of neurosis. She absolutely could not throw away anything, particularly food. She grew up scraping for every meal, washing off discarded candy she found in the street. Nothing was ever wasted and there were harsh punishments for not finishing a meal. As a result, her habits were so ingrained in who she was that Mom never fully adjusted to having money to spare.
Sometimes her inability to throw things away could be quite comical. Once I opened the refrigerator to get a drink and there on one of the shelves was a little plastic scooper Mom had saved from a can of powdered drink mix. Inside the little scooper was some water and two little pieces of a green bean. The two pieces together didn't even add up to a whole bean! I was laughing so hard that when Dad came into the kitchen with mom and asked what was so funny all I could do was point to the little scooper. Dad looked at it, looked at mom, looked at me, then picked it up and handed it to me with two words, "Save her!"
It was this unusual pair that built a wonderful and richly fulfilling life together: Dad with his exciting and costly hobbies and mom with her creative and frugal ones. Her common sense brought balance to his whimsical impulses. They were truly a match made in heaven.
While I was still in grade school Dad began his next hobby: falconry. He started with one bird, a great horned owl who he named Eddie after Eddie Cantor. Eddie lived in our garage. Orphaned as a baby, dad adopted him while he still had his downy feathers. As he matured his markings were beautiful with a full white beard surrounded by black and brown feathers. Our garage was connected to the house by a long hall that led directly to my parents bedroom and adjoined a shorter hall leading to the living room. Dad delighted in leaving the door to the hallway opened, knowing his feathered friend would be unable to resist the urge to venture out to look for him. Dad would wait in a chair in the living room with a clear view of the place where the two hallways connected. Eddie would come trotting down the hall and peek around the corner, focusing his large, yellow eyes as he did so. "Eddie!" Dad would jokingly scold him,"What are you doing, son?? Get back in the garage!" But Eddie would just run into my parents' bedroom, against my mother's loud protests, take off and land on a lampshade, poking holes through the fabric. Dad allowed all of this because he thought it was hilarious and not-so-secretly because he wanted to drive my mother crazy. It worked like a charm.
Dad continued this hobby for over a decade. When my friends gave their parents directions to my house they described it as "the big corner house with the eagle/hawk/owl in the yard...no, not a statue, a REAL one!" Different birds came and went, their stays ranging from a few days to years. Dad usually had more then one bird of prey at any given time. Usually when birds were brought to our home it was because they had been shot or orphaned. Some tragedy would put them in our custody and dad would rehabilitate these birds both surgically and through daily care. He worked with wild life organizations to help repopulate endangered raptors and protect them from hunters and others who would do them harm. Much of his disposable income went toward the birds. Eventually his operation became too draining and he had to re-home the birds in his care. It was time to move on to less taxing and less expensive hobbies.
By the time I reached my thirties, Dad had accomplished everything on his original list of goals and so much more. He is a shining example of what we can accomplish if we put our minds to it, of how to push past any challenges undaunted and succeed at anything. He is a hero, a scholar, a dreamer, and a teacher...the greatest triumph of the human spirit that I will ever have the honor to witness first hand.
When Dad was nearing retirement they decided to build their last house. They actually built it around an existing house on a large piece of land. Mom did most of the designing of the house, making sure a special study was built just for Dad and his airplanes and models. What would normally be the garage was connected to the house with a car port in between. The garage was his workshop, filled with works in progress, tools and equipment. I don't know everything he had planned for his retirement, but I know he didn't plan on doing it without Mom. He saw his study and workshop as tangible manifests of her love for him. Those rooms are the root of his attachment to this house. She was his other half and her death was an unexpected and devastating loss.
Considering all of this, we started his journey through Alzheimer's with a decidedly stubborn and independent patient. Alzheimer's patients often become more stubborn and outspoken as the disease progresses. For many caregivers the challenge is easing their loved ones into a life in which control is slowly taken away. We were not allowed to gradually become accustomed to the stubbornness that develops with the advancement of the illness...we started there from day one.
Maintaining balance and weathering the daily storms can be a real balancing act. The most important thing has been to keep Dad safe while allowing him his dignity. He has fought us tooth and nail on nearly every issue but, in spite of everything, he loves us and at least for now knows we are looking out for him.
(to be continued)
Sunday, October 13, 2013
The Balancing Act:Initial symptoms (part 1)
The evolution of Dad's care has been a ten year process. Before Mom died, she had always taken care of the housework and meals in their house. She was diagnosed with bladder cancer in the fall of 2003, about a week or two before Halloween. Her diagnosis was a complete shock to our family knowing that she had always taken exquisite care of her health. Mom watched her diet, walked 2 to 3 miles a day, didn't drink or smoke...basically she had a very clean and healthy life. She was stage 3 when her cancer was discovered and she immediately started chemotherapy. Over the next two months, during the course of Mom's treatment, I sometimes had to keep the kids away which I know was terrible for her. She lived for her grandchildren and visited with them a couple times a week. Unfortunately Kelly was in grade school and Allison was still just a toddler. The possibility was too high to risk one of them exposing her with her weakened immune system to some illness they had brought home from school.
By Christmas Mom was in constant pain from her treatment. She tried to make the house beautiful for all of us as she did every Christmas but it was very difficult for her. We all pulled together to decorate the house, prepare Christmas dinner, and make sure there were plenty of gifts and treats for the kids. Mom dressed in a festive holiday dress and Christmas tree earrings, looking beautiful in spite of her illness. Later we would look at the photos of her taken that day and we could see the pain in her expression that she was trying so hard to hide. That was the last time she would see all of us. A week later, after caring for her around the clock for 2 days, Dad and Paula had no choice but to admit her to the hospital. Paula told me as they wheeled her in that Mom reminded her, "Paula, you're my power of attorney". "I know, Mom", she reassured her, "But, you're not going to die". Mom replied, "I'm not..?". Paula and Dad saw her to her room, kissed her goodbye and promised to be back in the morning. Within a half hour they received a call to return to the hospital. An accident had happened. Mom had been given a drug to sedate her while they inserted her catheter. The staff performing the procedure failed to watch her airway. She was without oxygen long enough to slip into a coma. She would never wake up again. Mom spent two weeks in ICU fighting for her life. We all took shifts watching and waiting, hoping for some sign that she would rally. All of her healthy habits were probably what kept her heart beating the last week. Her brain was no longer active.
Ultimately we had to make the decision to turn off the machines. We, her children, our spouses, her grandson and Dad, all gathered in her room with the curtains drawn, blocking out the rest of the unit. We stood in a circle around her bed, everyone holding a hand, a foot, touching an arm or a leg. With the machines turned off we watched her heart monitor continue for several minutes. Eventually her line went flat and I saw Dad lean over and kiss her head. "Godspeed, love..", he said softly. Our family was frozen in that moment for a few minutes. We trickled out of the room one by one. Dad's face was very red but I never saw him cry. It was not his way. He would show his grief in the weeks and months that followed...but never through public tears.
We all had our ways of dealing with mom's passing. Paula and Hillary assembled dozens of duplicate photo albums with years of pictures starting with our parents high school pictures all the way to her last Christmas. We were all expected to participate in this project. I found this a bit frustrating because I was in the process of completing my accounting degree in addition to working and being a parent of two young children. In the end, though, everyone appreciated the wonderful keepsakes they created and sent to many of Mom's relatives.
Paula, Hillary and I all worked in Dad's office. The three of us took turns making lunch for Dad the way Mom did, but we all started noticing dad's rapid drop in weight. Paula started checking up on him at home more often and found he had almost no ability to take care of himself. She began showing him how to make simple meals, teaching him how to run the washer and dryer and other basic household skills. He slowly began to adjust. That's when we all started visiting him once a week. It was an idea Paula initiated to subtly confirm that Dad was taking proper care of himself without making him feel he had us looking over his shoulder all the time. After a while he began to look healthier and we all let out a sigh of relief.
His grief during that time was very apparent. I remember one day before he went in to surgery he stopped me. I could tell something was bothering him.
"What's wrong?" I asked.
"I really loved her....I hope she knew I loved her."
"Dad, I know she knew you loved her. I know it for a fact", I said confidently.
"How do you know?" he pressed.
"Because I was with her for her last chemo treatment. I asked her how she was doing and she told me that you were her greatest support. She said that when she was having a particularly bad day and was feeling like she might not make it, you told her not to give up, that you weren't giving up and modern medicine creates new things every day...that she might even be the first person to receive an artificial bladder", I told him.
I saw his face change as he listened. He said, "Thanks, Erin. Thank you for telling me that. I had no idea." He hugged me and we went back to work.
Dad was in the process of winding down his practice. Few surgeries were scheduled as that year passed affording plenty of time for us to observe how he was handling life without mom. He was still an attractive older man and some of his patients hinted that he might remarry. "I am married. My wife is deceased." he would respond. It became very clear he had no intention to ever have another partner. The love of his life was gone. She was not only his wife but his best, sometimes only, friend. How could he ever even come close to that kind of relationship again?
Keeping dad entertained was a high priority since we all suspected he might allow his depression to take over his psyche. After his practice closed he spent many hours in his workshop, working on his latest project, a kit plane he hoped to eventually fly. My brother, Tom, worked with him, their shared hobby keeping Dad at least a little active and his mind focused. It was a wonderful hobby and probably made for some of his happiest moments. We also wanted to make sure dad had some kind of pet to keep the house from being completely silent when no one else was home, so we all chipped in and bought him a small parrot. He enjoyed the parrot, naming him Mickey, and talked to him often. Mickey had a bit of an attitude and when one of us came over to check on Dad, Mickey made sure we got an earful as soon as we entered the house, squawking and bitching until we left. He had to be put in time out in a back room during family gatherings in order for us to hear each other.
For a while things seemed okay. Our visits were a few times a month with no specific schedule.
It was with Mickey we noticed the first signs of Alzheimer's. Dad frequently forgot to feed him and it became common to find empty seed and water cups when we checked on him. We had many pets growing up and Dad had always taken very good care of them so it was troubling to see him neglecting Mickey. After a while we started noticing his memory getting worse. It was suggested at the time that it might be the beginnings of grief related dementia. He was always very engaged in conversations about science, school, pets and hobbies. Although his interest was still there, we noticed he would occasionally repeat questions or statements. It was a subtle beginning to the looping with which were are now all too familiar.
Then Dad started losing time, too, forgetting what he was doing and why. He would get into his car to go to the grocery store just a few blocks away and forget where he was going. Because of this, we decided to start hiding his keys and offering to go to the store for him. When his memory really started to go we told him his car had a dead battery. After a while he stopped trying drive. I think deep down he was afraid to drive and was glad others were willing to do the driving for him.
Dad was aware he was losing his memory and it terrified him. He would call Paula in the middle of the night and say, "Paula, I'm worried about Mom. She's not here and I don't know where she is." Paula would then have the terrible job of reminding him that Mom was gone. That was never easy and it happened more then once. Another time, he called Hillary around six o'clock and told her, "I'm really worried. I know what time it is and I can't remember a thing I've done today". By then we all knew what was happening and had no idea how to reassure him. It was a very helpless feeling.
The watershed moment in Dad's daily care occurred about three years ago. We all started visiting dad a couple times a week. He would have lunch or dinner with at least one of us every day. Most visits were just a meal and some conversation, usually not more then an hour. Then one day someone, Hillary, I think, notice his leg was swollen...so swollen he could not put on the jeans that he practically lived in. She got him into a pair of scrub pants and took him to the hospital. It was a clot and it was dangerous. He spent several days in the hospital mostly arguing with the doctors about when he would be discharged. He was finally released but needed round the clock care as he had been put on a medication that caused hallucinations and night terrors. He was also unable to get around without a walker and was very unsteady on his feet. The likelihood of a fall was a very real concern. Jennifer was still alive then and since Tom, Paula and I worked all weekdays, she and Hillary alternated day shifts with Dad while the rest of us juggled nights. Tom had the misfortune of the first night shift. He had come from a long day at work to relieve me. I had been sitting in the family room close to Dad's bedroom, within good earshot if Dad were to get up and try to move around. Tom was quite tired and didn't think there would be a problem with him sleeping in the guest room, just across the hall from Dad. Although it is no further away then where I sat during my watch, this guest room, as we discovered that night, is practically sound proof. Poor Tom never heard Dad get up to use the bathroom, lose his footing and fall. Dad may very well have been on the floor for hours. It was Hillary who came for her early morning shift and found Dad on the floor while Tom slept in the guestroom unaware. Tom felt terrible.
During the day Hillary noticed the hallucinations brought on by his meds. Dad would call her attention to birds flying around the room, would refer to her by the name of his former scrub nurse and at one point appeared to hallucinate performing surgery on her arm, finishing by saying, "There. Now keep that good and clean and I'll see you tomorrow".
When I came over he slept much of the time but he was having nightmares. He woke up from one saying, "Did you see that?"
"No", I said, morbidly curious, "What did you see?"
"Some asshole just walked in here, said something that made absolutely no sense and then flew away!" he said angrily.
"You were having a bad dream, Dad. No one has been in here, I promise."
"I've been having terrible dreams about being seriously disabled. It's pretty scary, Erin. I don't want to be disabled."
"You're going to be okay, Dad. It's just the meds. You'll be off of them soon."
It took longer then we expected for Dad to recover and the round the clock care was exhausting. It seemed as soon as one problem was resolved another would pop up. When his mobility began to return we were able to allow him to be alone for an hour or so between caregivers...and as I found out ANYTHING could happen in that short time.
I arrived for one of my visits entering from the door at the carport. As soon as I walked in a wave of foul odor hit me. I called out for Dad and heard him making his way out of the laundry room. He was shuffling out in a shirt and a pair of briefs, embarrassed and immediately started to explain.
"I am so sorry. I have had explosive diarrhea and I'm afraid that front bathroom is a mess. I really tried to clean it up."
"Aw, don't worry about it. You rest and I'll handle it, Dad," I told him. Actually I was terrified of what I was about to find. I went to the bathroom he had indicated and, well, he had not exaggerated. His jeans lay on the floor, the inside coated. He clearly had not made it on time. There was diarrhea on the toilet, smeared on the counter...pretty much everywhere. I sent a text to Paula letting her know the latest disaster and began the horror of cleanup. Paula decided to come over and help but by the time she got there I had taken care of the worst. After everything was in the wash, mopped and/or disinfected we went to the kitchen and slumped in two chairs at the table.
We were both quiet for a moment and then Paula let out an exasperated laugh. "Ya know..." she began, " God's right. We really don't have enough to do. God just said 'I know what they need! EXPLOSIVE DIARRHEA!!'" throwing her hands in the air. We both laughed at the situation. Then she smiled. "You know, Erin, you and I are the only ones who could have handled this one."
"Yeah, your right." I agreed. "Once you've had kids you're more prepared for this sort of thing.
This was one of the worst incidents I can recall but it was a glimpse of things to come. Dad could no longer be alone for long periods of time. It was the beginning of the schedule that would so vastly change all of our lives.
(To be continued)
By Christmas Mom was in constant pain from her treatment. She tried to make the house beautiful for all of us as she did every Christmas but it was very difficult for her. We all pulled together to decorate the house, prepare Christmas dinner, and make sure there were plenty of gifts and treats for the kids. Mom dressed in a festive holiday dress and Christmas tree earrings, looking beautiful in spite of her illness. Later we would look at the photos of her taken that day and we could see the pain in her expression that she was trying so hard to hide. That was the last time she would see all of us. A week later, after caring for her around the clock for 2 days, Dad and Paula had no choice but to admit her to the hospital. Paula told me as they wheeled her in that Mom reminded her, "Paula, you're my power of attorney". "I know, Mom", she reassured her, "But, you're not going to die". Mom replied, "I'm not..?". Paula and Dad saw her to her room, kissed her goodbye and promised to be back in the morning. Within a half hour they received a call to return to the hospital. An accident had happened. Mom had been given a drug to sedate her while they inserted her catheter. The staff performing the procedure failed to watch her airway. She was without oxygen long enough to slip into a coma. She would never wake up again. Mom spent two weeks in ICU fighting for her life. We all took shifts watching and waiting, hoping for some sign that she would rally. All of her healthy habits were probably what kept her heart beating the last week. Her brain was no longer active.
Ultimately we had to make the decision to turn off the machines. We, her children, our spouses, her grandson and Dad, all gathered in her room with the curtains drawn, blocking out the rest of the unit. We stood in a circle around her bed, everyone holding a hand, a foot, touching an arm or a leg. With the machines turned off we watched her heart monitor continue for several minutes. Eventually her line went flat and I saw Dad lean over and kiss her head. "Godspeed, love..", he said softly. Our family was frozen in that moment for a few minutes. We trickled out of the room one by one. Dad's face was very red but I never saw him cry. It was not his way. He would show his grief in the weeks and months that followed...but never through public tears.
We all had our ways of dealing with mom's passing. Paula and Hillary assembled dozens of duplicate photo albums with years of pictures starting with our parents high school pictures all the way to her last Christmas. We were all expected to participate in this project. I found this a bit frustrating because I was in the process of completing my accounting degree in addition to working and being a parent of two young children. In the end, though, everyone appreciated the wonderful keepsakes they created and sent to many of Mom's relatives.
Paula, Hillary and I all worked in Dad's office. The three of us took turns making lunch for Dad the way Mom did, but we all started noticing dad's rapid drop in weight. Paula started checking up on him at home more often and found he had almost no ability to take care of himself. She began showing him how to make simple meals, teaching him how to run the washer and dryer and other basic household skills. He slowly began to adjust. That's when we all started visiting him once a week. It was an idea Paula initiated to subtly confirm that Dad was taking proper care of himself without making him feel he had us looking over his shoulder all the time. After a while he began to look healthier and we all let out a sigh of relief.
His grief during that time was very apparent. I remember one day before he went in to surgery he stopped me. I could tell something was bothering him.
"What's wrong?" I asked.
"I really loved her....I hope she knew I loved her."
"Dad, I know she knew you loved her. I know it for a fact", I said confidently.
"How do you know?" he pressed.
"Because I was with her for her last chemo treatment. I asked her how she was doing and she told me that you were her greatest support. She said that when she was having a particularly bad day and was feeling like she might not make it, you told her not to give up, that you weren't giving up and modern medicine creates new things every day...that she might even be the first person to receive an artificial bladder", I told him.
I saw his face change as he listened. He said, "Thanks, Erin. Thank you for telling me that. I had no idea." He hugged me and we went back to work.
Dad was in the process of winding down his practice. Few surgeries were scheduled as that year passed affording plenty of time for us to observe how he was handling life without mom. He was still an attractive older man and some of his patients hinted that he might remarry. "I am married. My wife is deceased." he would respond. It became very clear he had no intention to ever have another partner. The love of his life was gone. She was not only his wife but his best, sometimes only, friend. How could he ever even come close to that kind of relationship again?
Keeping dad entertained was a high priority since we all suspected he might allow his depression to take over his psyche. After his practice closed he spent many hours in his workshop, working on his latest project, a kit plane he hoped to eventually fly. My brother, Tom, worked with him, their shared hobby keeping Dad at least a little active and his mind focused. It was a wonderful hobby and probably made for some of his happiest moments. We also wanted to make sure dad had some kind of pet to keep the house from being completely silent when no one else was home, so we all chipped in and bought him a small parrot. He enjoyed the parrot, naming him Mickey, and talked to him often. Mickey had a bit of an attitude and when one of us came over to check on Dad, Mickey made sure we got an earful as soon as we entered the house, squawking and bitching until we left. He had to be put in time out in a back room during family gatherings in order for us to hear each other.
For a while things seemed okay. Our visits were a few times a month with no specific schedule.
It was with Mickey we noticed the first signs of Alzheimer's. Dad frequently forgot to feed him and it became common to find empty seed and water cups when we checked on him. We had many pets growing up and Dad had always taken very good care of them so it was troubling to see him neglecting Mickey. After a while we started noticing his memory getting worse. It was suggested at the time that it might be the beginnings of grief related dementia. He was always very engaged in conversations about science, school, pets and hobbies. Although his interest was still there, we noticed he would occasionally repeat questions or statements. It was a subtle beginning to the looping with which were are now all too familiar.
Then Dad started losing time, too, forgetting what he was doing and why. He would get into his car to go to the grocery store just a few blocks away and forget where he was going. Because of this, we decided to start hiding his keys and offering to go to the store for him. When his memory really started to go we told him his car had a dead battery. After a while he stopped trying drive. I think deep down he was afraid to drive and was glad others were willing to do the driving for him.
Dad was aware he was losing his memory and it terrified him. He would call Paula in the middle of the night and say, "Paula, I'm worried about Mom. She's not here and I don't know where she is." Paula would then have the terrible job of reminding him that Mom was gone. That was never easy and it happened more then once. Another time, he called Hillary around six o'clock and told her, "I'm really worried. I know what time it is and I can't remember a thing I've done today". By then we all knew what was happening and had no idea how to reassure him. It was a very helpless feeling.
The watershed moment in Dad's daily care occurred about three years ago. We all started visiting dad a couple times a week. He would have lunch or dinner with at least one of us every day. Most visits were just a meal and some conversation, usually not more then an hour. Then one day someone, Hillary, I think, notice his leg was swollen...so swollen he could not put on the jeans that he practically lived in. She got him into a pair of scrub pants and took him to the hospital. It was a clot and it was dangerous. He spent several days in the hospital mostly arguing with the doctors about when he would be discharged. He was finally released but needed round the clock care as he had been put on a medication that caused hallucinations and night terrors. He was also unable to get around without a walker and was very unsteady on his feet. The likelihood of a fall was a very real concern. Jennifer was still alive then and since Tom, Paula and I worked all weekdays, she and Hillary alternated day shifts with Dad while the rest of us juggled nights. Tom had the misfortune of the first night shift. He had come from a long day at work to relieve me. I had been sitting in the family room close to Dad's bedroom, within good earshot if Dad were to get up and try to move around. Tom was quite tired and didn't think there would be a problem with him sleeping in the guest room, just across the hall from Dad. Although it is no further away then where I sat during my watch, this guest room, as we discovered that night, is practically sound proof. Poor Tom never heard Dad get up to use the bathroom, lose his footing and fall. Dad may very well have been on the floor for hours. It was Hillary who came for her early morning shift and found Dad on the floor while Tom slept in the guestroom unaware. Tom felt terrible.
During the day Hillary noticed the hallucinations brought on by his meds. Dad would call her attention to birds flying around the room, would refer to her by the name of his former scrub nurse and at one point appeared to hallucinate performing surgery on her arm, finishing by saying, "There. Now keep that good and clean and I'll see you tomorrow".
When I came over he slept much of the time but he was having nightmares. He woke up from one saying, "Did you see that?"
"No", I said, morbidly curious, "What did you see?"
"Some asshole just walked in here, said something that made absolutely no sense and then flew away!" he said angrily.
"You were having a bad dream, Dad. No one has been in here, I promise."
"I've been having terrible dreams about being seriously disabled. It's pretty scary, Erin. I don't want to be disabled."
"You're going to be okay, Dad. It's just the meds. You'll be off of them soon."
It took longer then we expected for Dad to recover and the round the clock care was exhausting. It seemed as soon as one problem was resolved another would pop up. When his mobility began to return we were able to allow him to be alone for an hour or so between caregivers...and as I found out ANYTHING could happen in that short time.
I arrived for one of my visits entering from the door at the carport. As soon as I walked in a wave of foul odor hit me. I called out for Dad and heard him making his way out of the laundry room. He was shuffling out in a shirt and a pair of briefs, embarrassed and immediately started to explain.
"I am so sorry. I have had explosive diarrhea and I'm afraid that front bathroom is a mess. I really tried to clean it up."
"Aw, don't worry about it. You rest and I'll handle it, Dad," I told him. Actually I was terrified of what I was about to find. I went to the bathroom he had indicated and, well, he had not exaggerated. His jeans lay on the floor, the inside coated. He clearly had not made it on time. There was diarrhea on the toilet, smeared on the counter...pretty much everywhere. I sent a text to Paula letting her know the latest disaster and began the horror of cleanup. Paula decided to come over and help but by the time she got there I had taken care of the worst. After everything was in the wash, mopped and/or disinfected we went to the kitchen and slumped in two chairs at the table.
We were both quiet for a moment and then Paula let out an exasperated laugh. "Ya know..." she began, " God's right. We really don't have enough to do. God just said 'I know what they need! EXPLOSIVE DIARRHEA!!'" throwing her hands in the air. We both laughed at the situation. Then she smiled. "You know, Erin, you and I are the only ones who could have handled this one."
"Yeah, your right." I agreed. "Once you've had kids you're more prepared for this sort of thing.
This was one of the worst incidents I can recall but it was a glimpse of things to come. Dad could no longer be alone for long periods of time. It was the beginning of the schedule that would so vastly change all of our lives.
(To be continued)
Sunday, October 6, 2013
Coping with Humor
Now that my readers have had a window into my experiences as a caregiver the big question is: How do you cope with a steadily progressing brain disease when no cure is possible and the ultimate resolution of the illness could take years, in some cases decades? The answer: by finding humor in the situation. When it first began to dawn on me that we were in for a long and tedious road I began talking to various people in order to get some perspective. One of my coworkers had a friend who worked in a home for Alzheimer's patients. She said that one of the patients was a former doctor in advanced stages of dementia. He thought he was a doctor at the facility and would try to make his rounds. The nurses found the only way to keep him happy was to give him a clipboard with patients he could visit. This was a great solution....except....sometimes he didn't feel like wearing clothes. Hmmmm, what to do? I never heard how they resolved this little problem other then shooing him back to his room. I guess you do what you can and laugh at the rest.
We have tried a lot of ways to keep Dad entertained. One favorite is to watch old episodes of Columbo. On a side note, Peter Falk had Alzheimer's. I cried the day I heard he passed away. He was always a big favorite growing up and even as an adult. We would sometimes do Columbo impressions "Just one more thing...not that it's very important...". Dad loves Columbo, but as with everything, he starts looping as soon as we pop the disk in the player. "COLUMBO!" he exclaims, "He's vertically challenged"....every time. Sometimes he will add, "I think that's why you like him." Yay, another short joke....but I've been short my whole life so I'm pretty well stocked on ammo.
Comeback 1: "Not vertically challenged, Dad, travel sized for your convenience!"
Comeback 2: "Not vertically challenged...new and improved portable model with a sleek, compact design!"
Comeback 3: "No, it's 'cause he's sexy!" (actually, I use this one most often just to see Dad's reaction...cracks him up.)
He also calls attention to Columbo's "slick looking car" (It's an import, dad! How can you not love a classy import?) and the fact that he's a "snappy dresser" (Nah, Dad, he's totally hot, he must have women falling all over him). Columbo is an easy favorite and tends to be our fall back when we are out of new ideas.
We also bought another old series that few people will probably remember: Baa Baa Black Sheep. I knew this would be a home run before I even bought it. Dad loved this back in the '70s. He would watch it every week and I would make popcorn and a root beer float for him while he watched. What I didn't expect when we bought the first season for him was the landslide of loops I was about to trigger. Dad is an encyclopedia of WWII aircraft trivia....and he LOVES to give pop quizzes. Admittedly I didn't come prepared for the pilot episode. Dad would ask me "What kind of plane is that?" and I would reply, "I don't know, what is it?" He could never just answer the question, he had to fain disappointment, slumping his shoulders, groaning and putting his hand to his head...THEN he would tell me, "It's a Vought Sikorsky Corsair!! What was the model number?" Right, because if I don't know the name what are the odds I'll know the model number??? "F4U!!" he would blast at me. The irony of the model number made it easy to remember ("F" for you...for not knowing). He loves to rub it in when he knows something I don't. He acts like it's proof how much smarter he is then me, but he also doesn't know I take notes. As always the question came again a few minutes later, "What kind of plane is that?" "Corsair", I replied. "Okay, but what's the whole name?" he pressed. "Vought Secousky?" "Sikorsky!! Not too bad...but what was the model number?" ...ready...set..."F4U!"
"WOW!! How did you know that?"...oh, let me think...
He would test me about the real people on whom the series was based, other planes used in the series, and, a big point of contention, what kind of dog was Meatball, Pappy's pet. He would ask "What kind of dog is that?" and I would reply, "Bull Terrier." He would do the whole disappointed slump, groan and verbal slap, "It's a PIT BULL!" Against my better judgement I would argue, "Sorry, Dad, I know my dogs, and THAT is a Bull Terrier. A Pit Bull is a lot larger with a box shaped head." Then I pulled up both dogs on my android to prove the difference. Unfortunately, even after proving my point, somewhere in his psyche he just could not accept being wrong, so after a few minutes he would try again..."What kind of dog is Meatball, Erin?" Pulling up the picture again on my android I would insist, "He's a Bull Terrier, Dad." When he would start to protest I would again Google "pit bull" to show him the difference. This argument was never fully resolved...the idea of being proven wrong when he was so sure he was correct was unfathomable to Dad. I'm not sure why I couldn't just let him win. Maybe it's because he so often feels the need to belittle me, everyone, really, with his comparatively vast knowledge of the world. Knowing he is wrong and being able to prove it to him is a rare and sweet pleasure for now.
Mike often came over to watch "Black Sheep" with us. I prepared him well, and he aced his first pop quiz. As with anything, though, the looping quizzes grew old and tiresome. Dad would start to say, "Okay, time for a quiz....what kind of...?" and instead of waiting for the question I would just rattle off all the answers I knew, "Vought Sikorsky Corsair, F4U, B10, Greg "Pappy" Boyington, NOT a pit bull but a bull terrier...".
"Oh", he would respond, "have I already asked those questions?" We knew it was time to find another movie or series when we became a little too silly with our answers to the pop quizzes.
Question: "What kind of plane is that?"
Correct answer: Vought Sikorsky Corsair, F4U. (impressed remark from Dad here)
New answer: A blue one! (slump, groan, "why me" look from Dad)
Question: "Who is that in front of the plane?"
Correct answer: Greg "Pappy" Boyington (impressed remark)
New answer: A dude! (slump, groan, "why me")
Second guess: A white dude? ("wiseass!!!")
Question: "What kind of dog is Meatball?"
Correct answer: Bull Terrier (slump, groan, "why me")
Dad's answer: Pit bull (I never give this answer so he is never impressed)
New answer: A f-ugly one! ("wiseass!!!")
Okay, maybe it was wrong to have quite so much fun at his expense, but at least it lightened the mood for a few visits.
For a while we tried to find games he could enjoy. One really good one was Jenga. Everyone had fun and plotting his next move seemed to stimulate his mind a bit. For some reason, though he just stopped wanting to play and preferred to watch. This kind of defeated the purpose. We also tried Dominoes but he found that hard to follow so we ended up just setting them up in patterns and pushing them down. Outlets come and go but we keep trying, hoping to keep his pilot light momentarily lit. I'm sure a day will come when the light won't come on anymore, but until then we will continue as we do, trying new things.
At the end of the evening the ritual of saying goodbye begins with him hoisting himself out of his chair, stubbornly refusing help, and shuffling toward the back door, letting the dog out to do his business as we walk to the car port. I give him a hug and a kiss after dealing with the usual protests to my leaving. Then he always says the same thing, "Okay, try to be a good girl".
I reply, "I'll do my best but I make no promises. Don't throw any wild parties while I'm gone." .
"Well okay...maybe just a small one", he says with a chuckle. Then I see a glimpse of his protective side, "Remember, when you get home, one ring so I know you made it safely".
I answer with my best Lily Tomlin operator voice, "One ringy dingy!"
As I pull out of the long driveway I look back. Dad always waves goodbye with both hands. When I see this I respond with a triple honk on my horn.
Bye, Dad, see you soon.
We have tried a lot of ways to keep Dad entertained. One favorite is to watch old episodes of Columbo. On a side note, Peter Falk had Alzheimer's. I cried the day I heard he passed away. He was always a big favorite growing up and even as an adult. We would sometimes do Columbo impressions "Just one more thing...not that it's very important...". Dad loves Columbo, but as with everything, he starts looping as soon as we pop the disk in the player. "COLUMBO!" he exclaims, "He's vertically challenged"....every time. Sometimes he will add, "I think that's why you like him." Yay, another short joke....but I've been short my whole life so I'm pretty well stocked on ammo.
Comeback 1: "Not vertically challenged, Dad, travel sized for your convenience!"
Comeback 2: "Not vertically challenged...new and improved portable model with a sleek, compact design!"
Comeback 3: "No, it's 'cause he's sexy!" (actually, I use this one most often just to see Dad's reaction...cracks him up.)
He also calls attention to Columbo's "slick looking car" (It's an import, dad! How can you not love a classy import?) and the fact that he's a "snappy dresser" (Nah, Dad, he's totally hot, he must have women falling all over him). Columbo is an easy favorite and tends to be our fall back when we are out of new ideas.
We also bought another old series that few people will probably remember: Baa Baa Black Sheep. I knew this would be a home run before I even bought it. Dad loved this back in the '70s. He would watch it every week and I would make popcorn and a root beer float for him while he watched. What I didn't expect when we bought the first season for him was the landslide of loops I was about to trigger. Dad is an encyclopedia of WWII aircraft trivia....and he LOVES to give pop quizzes. Admittedly I didn't come prepared for the pilot episode. Dad would ask me "What kind of plane is that?" and I would reply, "I don't know, what is it?" He could never just answer the question, he had to fain disappointment, slumping his shoulders, groaning and putting his hand to his head...THEN he would tell me, "It's a Vought Sikorsky Corsair!! What was the model number?" Right, because if I don't know the name what are the odds I'll know the model number??? "F4U!!" he would blast at me. The irony of the model number made it easy to remember ("F" for you...for not knowing). He loves to rub it in when he knows something I don't. He acts like it's proof how much smarter he is then me, but he also doesn't know I take notes. As always the question came again a few minutes later, "What kind of plane is that?" "Corsair", I replied. "Okay, but what's the whole name?" he pressed. "Vought Secousky?" "Sikorsky!! Not too bad...but what was the model number?" ...ready...set..."F4U!"
"WOW!! How did you know that?"...oh, let me think...
He would test me about the real people on whom the series was based, other planes used in the series, and, a big point of contention, what kind of dog was Meatball, Pappy's pet. He would ask "What kind of dog is that?" and I would reply, "Bull Terrier." He would do the whole disappointed slump, groan and verbal slap, "It's a PIT BULL!" Against my better judgement I would argue, "Sorry, Dad, I know my dogs, and THAT is a Bull Terrier. A Pit Bull is a lot larger with a box shaped head." Then I pulled up both dogs on my android to prove the difference. Unfortunately, even after proving my point, somewhere in his psyche he just could not accept being wrong, so after a few minutes he would try again..."What kind of dog is Meatball, Erin?" Pulling up the picture again on my android I would insist, "He's a Bull Terrier, Dad." When he would start to protest I would again Google "pit bull" to show him the difference. This argument was never fully resolved...the idea of being proven wrong when he was so sure he was correct was unfathomable to Dad. I'm not sure why I couldn't just let him win. Maybe it's because he so often feels the need to belittle me, everyone, really, with his comparatively vast knowledge of the world. Knowing he is wrong and being able to prove it to him is a rare and sweet pleasure for now.
Mike often came over to watch "Black Sheep" with us. I prepared him well, and he aced his first pop quiz. As with anything, though, the looping quizzes grew old and tiresome. Dad would start to say, "Okay, time for a quiz....what kind of...?" and instead of waiting for the question I would just rattle off all the answers I knew, "Vought Sikorsky Corsair, F4U, B10, Greg "Pappy" Boyington, NOT a pit bull but a bull terrier...".
"Oh", he would respond, "have I already asked those questions?" We knew it was time to find another movie or series when we became a little too silly with our answers to the pop quizzes.
Question: "What kind of plane is that?"
Correct answer: Vought Sikorsky Corsair, F4U. (impressed remark from Dad here)
New answer: A blue one! (slump, groan, "why me" look from Dad)
Question: "Who is that in front of the plane?"
Correct answer: Greg "Pappy" Boyington (impressed remark)
New answer: A dude! (slump, groan, "why me")
Second guess: A white dude? ("wiseass!!!")
Question: "What kind of dog is Meatball?"
Correct answer: Bull Terrier (slump, groan, "why me")
Dad's answer: Pit bull (I never give this answer so he is never impressed)
New answer: A f-ugly one! ("wiseass!!!")
Okay, maybe it was wrong to have quite so much fun at his expense, but at least it lightened the mood for a few visits.
For a while we tried to find games he could enjoy. One really good one was Jenga. Everyone had fun and plotting his next move seemed to stimulate his mind a bit. For some reason, though he just stopped wanting to play and preferred to watch. This kind of defeated the purpose. We also tried Dominoes but he found that hard to follow so we ended up just setting them up in patterns and pushing them down. Outlets come and go but we keep trying, hoping to keep his pilot light momentarily lit. I'm sure a day will come when the light won't come on anymore, but until then we will continue as we do, trying new things.
At the end of the evening the ritual of saying goodbye begins with him hoisting himself out of his chair, stubbornly refusing help, and shuffling toward the back door, letting the dog out to do his business as we walk to the car port. I give him a hug and a kiss after dealing with the usual protests to my leaving. Then he always says the same thing, "Okay, try to be a good girl".
I reply, "I'll do my best but I make no promises. Don't throw any wild parties while I'm gone." .
"Well okay...maybe just a small one", he says with a chuckle. Then I see a glimpse of his protective side, "Remember, when you get home, one ring so I know you made it safely".
I answer with my best Lily Tomlin operator voice, "One ringy dingy!"
As I pull out of the long driveway I look back. Dad always waves goodbye with both hands. When I see this I respond with a triple honk on my horn.
Bye, Dad, see you soon.
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