Perspectives: Grieving the living

Over the past few months it seems like my father's condition is getting noticeably more advanced. All of us are handling it in our own way but I think Hillary is taking it the hardest. She has always had a hard time accepting impending loss. Over the past two years she has changed her own life for the better by becoming a vegetarian and losing sixty pounds. Now, Hillary thinks she can not only slow dad's decline through diet but actually reverse his Alzheimer's. At the time of this writing, there is no known way to reverse Alzheimer's through diet or any other means. If there is a way through medication, it is still not available to the public.
I have personally begun changing certain aspects of my diet in order to postpone Alzheimer's onset should I be so unfortunate as to acquire this condition in future years. Things pop up all the time in the media...what to eat, what to avoid, what can speed up the disease and speculation on what slows it down. Personally I eat homemade salads everyday, kale, onions, fresh tomatoes and carrots are frequent ingredients. Although I am not vegetarian I eat very little meat. What I do eat is very lean. Chicken breasts are grilled or roasted, not fried. Fish  is made on the grill...never farmed, either, and I pay attention to mercury levels. All of these things are relatively easy to research on the web.

The most recent thing I am looking into is something Hillary and Paula both brought up. Apparently there is some new evidence that suggests that coconut oil can slow the progress of the disease. Now Hillary has added two enormous coconut oil capsules to his daily meds. There has been no notable difference so far but I will keep observing for any progress. Truthfully, I don't believe it is possible to reverse his condition. At this point I am more concerned about improving his quality of life, as I am sure we all are. I want whatever best serves his remaining happiness. Unfortunately, so often his happiness and what will prolong his life are completely at odds. The brilliant, creative part of him has long gone. It is a moral dilemma between health and happiness. Selfishly I want to hang onto Dad but intellectually I know he is almost 80, unable to fly or build airplanes, unmotivated to leave his house for anything other then taking Buddy out to his backyard. Hillary believes, as do I, that the Aricept isn't doing diddly squat. Even if Kale, coconut oil, tomatoes or any homeopathic remedy can slow the effects of this insidious disease, the moral question becomes: to what end? So he can look forward to Columbo re-runs, more grudging visits from increasingly weary caretakers, or more looping conversations leaving him vaguely aware of the humiliation of losing his intellectual prowess...his primary source of pride. I struggle with this every day. It is unfair and inhumane, but he is my dad and until I have a clear understanding of what is truly right for him or some genuine breakthrough in Alzheimer's treatment is available I will continue to try to make him smile and give him a sense that he is loved, and loved by many.

I believe I understand and sympathize with Hillary's pain. I think she carries tremendous guilt about Jenny's death. Hillary couldn't save Jenny although she tried for years over and over to dry her out and get her back on track. I wonder if she blames herself for that. Having personally discovered the health benefits of vegetarian diet she is convinced that that is how she will cure Dad. One time I had brought him a steak sandwich. She begged me to scrape off some of the meat. I only did it that one time. He didn't get past the first three bites. As far as he was concerned, a sandwich without meat was pointless. How could she possibly expect him to embrace this idea when he can hardly hold a reasonably complex conversation?

This is how she grieves. For Hillary, grieving is an endless maze of saving and fixing things. When it comes right down to it, we are all experiencing the stages of grief. We are grieving for those parts of Dad that disappear everyday...a death of sorts on a continuous basis. To grieve the living seems strange but it is so obvious that that is exactly what is happening. Hillary is in the bargaining phase...."If I can just feed him the right things...If I can make him like certain things...if I can get him to not like sweets, meat, fat, etc....maybe he will stay a little longer. Maybe I can cure him."

I went through the anger phase for quite a while. I resented the visits and how they cut into my time with my children. Being the only one of my family with two children in school it angered me that I was expected to carry exactly the same number of shifts as others. Even Kelly voiced her own anger at the situation. "Why do you have to be there on week nights? Don't they understand you have a family at home?" When Allison's school work started to suffer I blamed the schedule, and in effect Dad, for my inability to properly supervise her homework. Mike was unable to be home early in the evening with his wholesale store hours. Why not bring her along on visits? As I have mentioned in previous posts, Dad was beginning to ask her embarrassing questions about her physical development. Allie has a good heart and as such she is also very sensitive to comments about her physical appearance. I couldn't expose her to a repeated line of questioning likely to make her feel self conscious, no matter how well meaning Dad might be. Although her grades were good, her ADHD almost kept her from being promoted to the 6th grade because of her difficulty completing standardized tests.

Because of this struggle to insure she was promoted along with the rest of the class I almost threw in the towel. I prepared an email to Paula detailing the problems the schedule had created in the lives of my family and offering to give up any portion of my inheritance to pay for additional home care for Dad. After thinking about what I had written I sent a message to Tom asking him to read it and tell me what he thought. It took him a while to get back to me but when he did, he surprised me.
"Don't send this yet, Erin. Let's think about this. What is your main problem? Time with your kids, right?" he pressed.
"Exactly", I agreed. "My kids are paying the price because I'm never around to help them when they need me."
"Well....what about this", he suggested, "I want to fly my plane on weekends and Anne stays home with Casey on weeknights, so I'm pretty well covered. What if you trade your Monday and Wednesday shifts for my Thursday and Saturday shifts? That way you get time with your kids when it matters most and I get my flying time."
I thought about it. It really was a near perfect solution. Time with the kids would be available and there would be a nice long break in between my last shift and my next shift. I accepted his offer and am happy to say it is working out beautifully. It is fair to say that my stress level has decreased, involvement in my children's homework and activities has improved dramatically and my positive attitude is returning. A side effect is that I believe I have become more compassionate as a caretaker. For a while Dad's repeated questions were a source of constant aggravation. Once I was able to take a step back and not feel so suffocated I began to look at the bigger picture. Dad needs us so much and he is frightened. He doesn't want to die and if it's going to happen, this is the worst imaginable way from his point of view...having to witness his intellect slowly leaking away.

Recently I came to his house on a Saturday for a lunch visit. I had traded my evening shift for my nephew's lunch shift. I was pressed for time that day because I was matron of honor for a wedding and in charge of the bachelorette party that night. I had a couple of short hours to visit and then would need to cut out fast.

Usually when I walk into the house Dad greets me the same way. From his chair he sees me, throws out his arms with a bright smile and says "HEY! It's the LITTLE KID!!" and gives me a big hug and a kiss. This time was different...very different.

I walked in, greeted Buddy and walked to the TV room where Dad was sitting as usual, but he was sitting forward in his chair with a worried look on his face. Dad looked up as I entered  the room.
"Hi, Daddy...you okay?" I asked.
"Erin....?" he began.
This startled me. He had not called me by name in over a year. In fact, if he called me by name it was by one of my sisters names, never my own. I had been deemed "the little kid" or "wiseass".
I walked over and lowered myself into the chair beside him, placing my hand on his arm.
"What's wrong, Daddy?"
"Are my parents separated? I haven't seen them together in years", he said. I was thunderstruck.
"No, Dad, your parents never separated...How about we take a walk?" I suggested, trying to sort out in my mind how I would explain the last twenty years to him. He agreed to walk. It was, after all, a beautiful fall day. Dad's backyard is about half the size of a high school football field. We walked around  it twice as I explained that his father had developed prostate cancer about twenty years ago, how his mother never left his father's side. They never separated. I then related how his mother lived another ten years, into her early nineties but that by the time she passed she really didn't recognize anyone anymore. She was surrounded by her loved ones until the very end. Although he was very somber he took it extremely well. He only commented, "Wow...I don't have any memory at all of any of that."

We continued to walk and chat about the beautiful weather and how much Buddy was reveling in running through the leaves. Then Dad did something remarkable. As we walked he found a dead branch laying on the ground. It was about four feet long and water logged from the recent rain. Dad took great trouble to keep his balance as he bent to pick it up. I held his elbow to keep him from stumbling as he stood. He then shuffled over to the chain link fence with as much purpose as I had seen in him in quite some time and, holding one end of the branch, he swung it like an axe smashing it in half on the fence post. Dad looked at the remaining half in his hand and tossed it over the fence as well.
He had a strange little smile on his face as he shuffled back to me.
"I'm not ready to die yet," he said defiantly.
I smiled back, "That's awesome, Dad! We aren't ready for you to die either."
With that, we went back in and had lunch. Great visit. Enlightening day. I wouldn't trade it for the world.
 (to be continued)

Perspectives...starting with Mom

Alzheimer's patients view their world very differently then the people and care givers around them. They don't know how their disease effects the emotions and reactions of others because so often they are not aware of the disease symptoms as they occur. I can use a lot of current examples but I think a better demonstration would be a story, not about my Dad, but about my Mom.

As I have mentioned, Dad had a plastic surgery practice. Hillary, Paula, Mom and I all worked there. As a family business, sometimes there were perks to the job. My mom had several procedures that kept her gorgeous over the years. One year, because her lips looked a bit thin, she decided to get fat injections to her lips. If you have ever known anyone who has had this procedure you may know that for the first week after the procedure it is best not to make any public appearances because your lips are bizarrely swollen. After mom's fat injections she looked quite strange...kind of like Howard the Duck. We actually called her "Mommy Ducky" for a week.  Knowing that she didn't look quite like herself Dad asked her not to come into the office during the afternoon when he was seeing patients for post-op visits and new consultations. As usual, Mom returned to work earlier then most but stayed only until after the morning surgeries as Dad had requested. One day that week, right after the morning surgeries while everyone was relaxing and grabbing a quick lunch in the kitchen, we heard a knock at the reception window at the front of the office.  "Hello?" someone was calling out, "We're trying to find the hospital. Can anyone give us directions?"

Mom bounded up to the desk, picked up a notepad and pencil, handed them to the man and woman standing at the window and started with the directions, "If you go out the front of this building you will need to turn out of the parking lot going east for about a mile...". The couple just stood there staring at mom's lips. The pencil was not moving. It was as if they were in a trance, unable to stop staring. From the kitchen Paula saw what was happening and realized that Mom's attempt to help was useless when combined with her ridiculously swollen mouth. Paula raced to the desk saying, "STOP! STOOOOP! They can't hear you! They're just watching you bounce your lips off each other!!"

I miss the hilarious stories about Mom. When she passed my world imploded. I can remember thinking, "Why can't I go with you?" It is an ache that will never go away. Sara still lived in Texas at the time. She had lost her mother two years earlier after an extended illness. A week after mom passed she could see how hard it had been for me watching my mom slip away. One day she came over with a small gift bag. "I have something for you", she said. I reached into the bag and pulled out a beautiful peach colored journal. On the inside cover she had written a note. "Write everything...all of your feelings, the love, the sorrow, the anger. I did this when my own mother passed. Sometimes I read what I wrote to her and find peace through those letters and through remembering. You  will find when you look back, even the worst memories will become precious." She also included two poems and a beautiful copy of my mother's obituary. I didn't remember writing in it and went looking for the journal yesterday. I did write in it...once. The letter to my mother was a five page outpouring of grief and guilt and a plea to her to comfort Dad who agonized that she might not have known how much he loved her. I couldn't read it all the way through so Mike read it to me.

I have kept so many of my mother's belongings... jewelry, photos, clothing. I recall so much about her...her platinum hair, her worn looking feet (the only part of her that was not beautiful), her arms, her hands, even her unpainted nails. She was so loving and extended that love so far beyond our family, volunteering to drive cancer patients and once even taking in a homeless teenager until he enlisted in the army. We never heard from him again but for a brief time he was part of our family. I have wondered what happened to him but think, perhaps, it is better not to know. She was so good to her nieces and nephews from my father's side, treating them as if they were her own children. The morning after she passed I woke to a knock at the door. It was my cousin Kris. He had walked three miles to my house and was sobbing hysterically. "I loved your mom like my own. She was so good to me, Holly, and the kids. I'm so, so sorry....". I knew what an effort he had made to walk all that way. He had serious heart problems and a staph infection because of a over-sized pin in his shoulder. My heart went out to him. Only three years later, his health problems took a turn for the worse and he followed her into the next world.

Until after Mom passed, Dad was more of a distant guardian, providing loving support when needed but never getting too close. Now with his Alzheimer's time is running out and I am desperate to know the man who I equally idolized and feared in my youth and early adulthood.With that in mind, I am finally using the journal Sara gave me. It will now be used to store brainstorms, memories, and ideas for dad. This gift was intended to be filled with thoughts and feelings. That it will be tool to help my father is ironic and perhaps a bit more fitting. I think Mom would have approved.

As I have begun writing about Dad's illness and our daily care schedule I find that I am finally following Sara's advice, her words resounding in my mind: "Write everything...even the worst memories will become precious". Sitting up in bed late at night I check if Mike is awake and if he is even remotely conscious I start to relate a new memory about dad. Obsession with trying to remember some of the minutia I have locked away has taken over my life. My mother and I were incredibly close; I could fill thousands of pages about her. Dad is a different story. As fascinating as my father is, he and I saw eye to eye on so few things. In some ways our core personalities are a lot alike. Both of us are quite grounded in our basic views, use our creative side as a tool for personal growth, have a very hard time accepting failure, and we are both profoundly stubborn. I also have a very high threshold of pain that I'm sure came from my father and even he has accused me of being too stoic in medical situations. This from the man who sewed his hand back together at the kitchen table in front of us. I think, however, that is where the similarities end.

Dad has a tendency to try to force his values on the people around him. It usually takes a personal experience or life changing event to cause him to become sympathetic to other people. I can recall a time when he became very ill for over a week. Before that happened, he was never particularly concerned when his patients complained of being hot or cold, sometimes even scolding them, "Quit your belly aching". That all changed when he got sick. The chills brought on by his illness were so uncomfortable that he never again made fun of his patients when they complained of feeling cold...in fact he went the extra mile to make sure he had plenty of blankets and warm socks in the incubator to make sure they were nice and cozy. Lesson learned and learned well.

Once when Allison and I were visiting Dad, I received a phone call on my cell from Elaine, one of my cousins. She was troubled because her mom was critically ill and Elaine needed to talk to someone who had been there. I went into the back yard with Buddy and walked around talking to her, trying to offer some insight, leaving Al to visit with Dad. While on the phone we also talked about Elaine's dad, Joe. He was my dad's youngest brother. In the course of the conversation we learned how much alike our fathers were, both very set in their beliefs particularly about career goals for their children. It seems my dad wasn't the only O'Houlihan man that thought the only worthwhile career pursuits were medicine and engineering. We finished our conversation with promises to keep in touch on a weekly basis and I made my way back into the house. As I entered through the patio door I could see Al and Dad sitting at the kitchen table deep in conversation.
"Miss me?" I asked suspiciously.
"Nah, we were just having a conversation about what Al wants to be when she grows up", Dad said with a look of personal pride.
 "Oh, I already know that", I replied, determined to cut off this destructive pattern before it started. "Circus acrobat, right Allie?"
"Uuuugh!" He groaned loudly, slumping and shaking his head in disappointment.
"International spy?" I guessed again with a wink to Al.
Her worried face changed to amusement and she lit up at my second suggestion. "YEAH!!" she laughed enthusiastically.
"Noooo!" Dad started to protest, but I cut him off.
"Allie, don't live anyone else's dreams. Do what makes you happy", I said kissing her on top of  her head.
 Fortunately Dad didn't dwell on this little power play and we still had a very nice visit.
On the way home I asked Allison what her grampa had suggested she should be when she grows up. She rolled her eyes, trying to remember and I interjected, "Engineer or doctor, right?"
"Yes!!" she said, equally surprised and relieved that I already knew. "How did you know?"
"He did the same thing to me, your uncle, your aunts and your cousins. He also tried to do that with Kelly but I wouldn't let him. Doctors and Engineers are fine things to be if that's what you want to be. Is that what you want, Al?" I asked.
"No", she admitted.
"Well, there are all kinds of engineers, but if you don't want to be an engineer and you become one anyway, do you know what kind of engineer you will be?" I baited her.
"What kind?" she asked, confused.
"A CRAPPY one!" I smiled.
We laughed. It was a great way to end the subject and make sure she knew she wasn't letting anyone down by going her own way.

(to be continued...probably tomorrow)

New Ideas, Perspectives and Escapes

I would like to ask my fellow caregivers if they struggle with giving medications to the patients in their care. Possibly because the patient in our care is also a doctor, his daily meds are a constant battle. Every visit I have to think of new responses to his irritation at being given medication that he, himself did not prescribe. Dad makes what I have called  his "asshole" face. It is a combination of irritation, condescension and victimization. He uses it in response to the process of taking care of him or if we are watching some interesting movie or program and does not want to admit he has gotten lost in the plot or forgotten the topic. I will put his meds next to his plate and he always pics up the Pradaxa (a blue and white capsule) first, gives me the asshole face and irately demands, "What's this??"
Answer #1: "It's your punishment for having children"
Answer #2: "It's a gift from the three wise men"
Answer #3: "It's a Smurf turd"  
He is rarely amused and I get his standard response..."Wiseass!"  I understand that the last thing he wants is to feel dependent on us, since that would be admitting that he can't take care of himself. Better to deflect his annoyance with an ill received joke then to get angry and try to force it on him...probably less dangerous, too.

Getting the asshole look during a movie or program is more challenging and far less amusing. It is better if he gets confused before the program really gets going. One time we started to watch City Slicker's 2, a movie he has enjoyed on clearer days, and as the opening credit cartoon continued he got lost and thought we were watching the actual movie. "This is CHAOS!!" he said angrily after staring me down with the asshole face didn't work. "Dad, it's just the opening credits!" I said exasperated. "The movie hasn't even started! Can you just wait?" He sulked through the first ten minutes of the movie, although I doubt he even remembered why he was angry. Over time I have found that movies with too much movement lose him pretty quickly and if the subject is not interesting enough to him, sometimes it is better to just turn it off and pop in a Columbo to save the evening.

No matter how hard we try as caregivers, we are human and bound to feel overwhelmed and angry. I can tell you for a fact I have had days that I am not particularly proud of as a caregiver...days that I would like to just wash my hands and be done with it all. I can tell you not to beat yourself up, that you are not a bad person for blowing up from time to time or wishing it was over, but without having contact with others who can relate, words are meaningless. In my own experience I have had days so low that as I turned the door knob to enter Dad's house, a part of me hoped I would find he had had some issue to put him in the hospital for a while just to give us all a break. Of course this never happens, he is always there in his chair ready to start hurling frustration and veiled desperation in my direction all night. Many would consider my position unusually lucky, with so many siblings directly involved in the care rotation, and for the most part they would be correct. On the other hand, it is also something of a forced march to look after Dad since he is an extremely stubborn, closed off person.

I can't help thinking if it had been Mom who had survived only to develop Alzheimer's, I think she would have been far easier to deal with and much more flexible about activities. Actually just thinking about the "what if it had been Mom" scenario, ideas for activities, hobbies and games flood into my head. Her interests were so broad, most of them could be simplified as the disease progressed.

Dad's interests are a focused few and trying to get him to venture into new territory is next to impossible. He has always been a bit of a hermit, never particularly social (his best friend lives 300 miles away and has seen him once in the past 10 years) with no regular friends or visitors other then family. Mom was the polar opposite; she participated in Garden Club, had a friend with whom she would power walk 3 miles a day, took her grandchildren to the park or the splash pond, basically loved getting out and seeing people. She was also a gifted seamstress, gardener and decorator, doing her own ceramic tile work in the master bathroom, sewing all the drapes and some of the upholstery, even dabbling in making simple stained glass windows for their home and Dad's office . How I wish Dad had this many outlets; It would make finding enjoyable outings and activities for him so much easier.

Recently Hillary brought an easel, large drawing pad and art supplies to Dad's house. As she was setting up a spot for Dad to draw he immediately began to protest, "This is yours? No, you should keep this, I don't need it". I could hear in his voice the translation, "I didn't ask you to bring this, nor do I want it. Take it back", but he was doing his very best to be polite about a kind gesture. Later I did some checking around online and discovered that drawing is highly recommended for Alzheimer's patients...the problem was getting him to try it. The next day when I came over I saw no new scribbles or sketches. Maybe we could try a sneaky approach. Certainly we could not rely on him to just naturally become inspired to draw...but perhaps setting up a subject he would find interesting would be enough of a nudge to get him in the chair. I grabbed a bar stool and one of his bird statuettes, a red parrot, and set it up next to the chair and easel. "What are you doing?" he asked. I replied, "Setting up a subject for you to draw. Hillary brought over her easel and art supplies to give you something interesting to do during the day". "Oh, she should take her things home. I don't want to take her things", he protested. Shortly after that, I sent Hillary a text letting her know what I had tried. She was so excited to know I had taken her attempt seriously and started thinking of other ways we could get him to the easel. The biggest obstacle, we felt, was that he would feel pushed if it was not his original idea. Perhaps we could tell him a little white lie and make him think it was he had expressed some interest in drawing. It was a possibility but probably would not work. Then Carrie had a truly inspired idea. Dad had been a professor and enjoyed teaching. Perhaps we could acquire a second easel and allow him to feel he was instructing us. It could work! But the next time I came over all of the art supplies were packed up. Bummer. I asked Hillary if she had had any luck but her answer was a short, "Not yet." Hillary is a talker, so a short answer is probably best left alone. It may be that the easel idea was doomed from the beginning but it sparked other ideas. Perhaps the real problem is not that he lacks motivation but the activities we are attempting hold no interest for him. Drawing and painting without a purpose might seem pointless to him. After all, when he was a surgeon he would do very complex, accurate drawings of bone and muscle structures. When building aircraft, his sketches were for the purpose of completing his project.

Perhaps puzzles would be worth trying or some other building activity. Maybe we could do some simple science experiments to see if he they would peak his interest. (This is a new idea and has not been tested. Time will tell.)

Something that definitely stimulates conversation is talking about new technology. A topic I recently brought up was the new water vapor/electronic cigarettes that people are using to quit smoking. One of my closest friends, Sara, effectively quit after almost 30 years of smoking using the e-cig. She updates me regularly on her progress. She had talked to me about quitting a few times before and I would tell her, "To be totally honest, the smoking worries me. I kinda like having you around."  Although I have tried to subdue my enthusiasm, concerned that she might backslide, I really do believe she has quit for good. I was so excited for her, I told Dad about it. He was amazed and had lots of questions about the vapor cigs. Although the conversation looped a few times, Dad was thoroughly captivated by the subject, particularly since he had such a hard time getting patients to quit before surgery. It was wonderful to see him so engaged and brightened up with interest. It is so hard to find things that captivate him that way.

Before I became a caregiver, vacations were not a high priority. Not that we never took trips, but they were just fun getaways, not escapes from reality. It seems, now, like part of my mind lives for those escapes, looking up new places to go, making plans sometimes even years in advance. They are not just important but absolutely crucial in order to maintain sanity. Without them, I might eventually give in to the urge to drop everything, scoop up my husband and kids and flee from this life permanently. After a couple trips I learned it was better to rack up some dad care IOU's rather then come back from vacation to a week long stretch of visits. I find the latter defeats the purpose of going away in the first place.

Recently, I took the girls to visit Sara in Colorado. It was a fantastic, activity filled vacation. We drove to the top of Pike's Peak and the girls had a chance to see the world from the top of a mountain; what an awe inspiring view it was! We also visited the cliff dwellings in Manitou Springs. I know the kids enjoyed it even if it was a little like a class field trip in the middle of our vacation. Probably the most amazing thing we did, though, was climb to the top of Helen Hunt Falls. It took real effort to hike up the trail, being very careful with our footing because the gravel covered path could be treacherous in steep places. The view looking down from the top of the fall was breath taking. Of course hundreds of pictures were taken on the trip, not only of the scenery but of our youngest daughters bonding and her 19 year old son, Jake, and my Kelly playing on a playground like they did when they were little and Sara lived in Texas. They have always had a chemistry that just seems to spark as soon as they reunite. Jake and Kelly are both equally attractive and it may be that part of the electricity between them is that, after being friends for so many years, they know they can comfortably be themselves around each other. Sara and I always notice and try not to fire too many knowing smiles across the room as we watch the sparks ricochet all around them. Our not-so-secret wish is that one day that sweet chemistry develops into something more...so we take lots of pictures and keep our fingers crossed. The best part of the vacation, by far, was just hanging out with old friends. I didn't want to return home and often called Mike, jokingly telling him to pack his bag, sell the house and join us. It was very hard to leave and all the way home I thought about when we might go back.

Short, two or three day breaks can sometimes be as beneficial as long ones, much like a power nap in the afternoon can be as important as a good night's sleep. Mike and I sometimes will take one night stay-cations just for a change of scenery and a little private time. For our twelfth anniversary we took a two day trip to Eureka Springs, Arkansas and stayed in a cabin with a jacuzzi tub. It was incredibly romantic and relaxing, probably the most we have ever gotten from our travel dollar. The beautiful and peaceful scenery as well as the in-town sights were a fantastic "power nap" vacation. Again, we were not yet home before we began planning to return.

I know I am getting frustrated when I start browsing vacation sites in my free time. When my mind is preoccupied with escape, it is probably time to do just that, however brief the trip may be. Then again, it may also be a sign that I need to try a fresh approach to my responsibilities as a caregiver...or maybe it's both. Nerves as well as coping mechanisms can wear thin without the occasional change of scenery. Vacations are easy. Refreshing an attitude is considerably more challenging.

(to be continued)

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...)

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)

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)