Let love light the way...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued...

Not my job...

Have you ever seen the picture of the dead possum in the middle of the road with the yellow lines painted right over it and the caption, "Not My Job!"? Realistically how hard would it have really been to move the dead possum out of the way? Not only do I feel it the street painters should have moved the possum but, if they had any sense of pride in their work they should have seen it as their duty...and yet I can't tell you how many times in the past three years I and others in my family have had that exact attitude as caregivers.

It started from the very beginning with the weekly visits. I made excuses to myself, "I have kids, I shouldn't have to put in as much time", "My job is stressful, I shouldn't be expected to visit more than an hour each time", "I clean up after my kids when I get home, why should I have to clean up after Dad, too?", "I didn't make the mess in the sink. That was left by the last person. Why should I be the one to clean it up?", "The toilet won't flush? Surely I'm not the only one who knows this", "Dad looks like he hasn't showered in a while, but, jeez, I have to remind my own kids to shower. Someone else can try to get him to bathe"....what was I really saying? NOT MY JOB!

I didn't always talk myself out of making a little extra effort but I am ashamed of how many times I did just that. Probably the biggest turning point for me was the incident with the explosive diarrhea I wrote about in a previous post. As Paula said, she and I were probably the only ones mentally prepared to handle such an event. That was the first time I actually thought "If not me than who?" It was my shift and therefore my duty to handle it as best I could. Still it took a while for the extent of my obligation as a caregiver to sink in.

Rationalizing reasons to pass the buck was easy for a while. Hillary works from home, spends most week days with him, therefore, I rationalized, she should take Dad to his doctor visits. After all, Allison has special medical needs and I have to handle her medical appointments, I should not have to handle Dad's as well. Filling prescriptions...since I don't take Dad to the doctor I don't know everything he is taking. I give him the pills conveniently inserted into his daily med containers without questioning. Paula also takes Dad to medical appointments and handles finances. Again I rationalized that I have enough on my plate and since she was familiar with Dad's bills there was no reason for me to change the status quo. I try to make dinner, not just bring dinner whenever possible, and what I make is usually pretty healthy. Doesn't that show that I'm trying? I try to find fun movies or games for him. Isn't that better then just the bare minimum? Maybe...but only just a little better. My self rationalization, while based on fact, was truly a cop out.

Our most recent issue has been getting Dad to shower. This is rather disturbing since Dad was once clean almost to the point of OCD. He took as many as three showers a day. There are no half baths in Dad's house. All are full baths with either shower, bathtub or both. I don't recall exactly when he stopped wanting to shower but Hillary believes it began with a fear of falling brought on by the incident when he fell in the middle of the night and wasn't discovered until morning. She could be right, but it was not until about the past six months when the problem began to really snowball. No one could get him to bathe. We would tell him he needed to shower and he would promise to do it later...next time we came over he would be wearing the same thing with a few more stains and his thinning hair would look a bit more oily.

It got so bad once that his food encrusted shirt smelled. I insisted he needed to get in the shower or at least change his clothes. He ordered me out of the house. I tried pointing out the pieces of food on his shirt that were probably not even from that day and he deliberately decided to gross me out by picking the dried food off and eating it right in front of me. I was so disgusted I left. "Fine!" I thought, "Wallow in your filth like a damn pig! See what I care!" I was furious...but I was not the only one attempting to get him to practice basic hygiene. Everyone was trying to some extent to get him into the shower! Tom, Bradley, Paula, Hillary...all of us were engaged in this absurd battle. 

One day I received a text from Hillary, "Dad's looking a little slick. I'm not leaving until he bathes".
I sent a text back, "I agree. I don't think he's showered for at least three weeks."

"Three weeks??? Try six!! No one can get him to shower. I think it's a deep seated fear that he will slip and fall." As unsteady as Dad has become, this theory was not at all unlikely.
Over the next six hours I received text updates from Hillary:
"Got him all the way to the bedroom. Started to get undressed."
"Damn! He's dressed again."
"Okay, he's in the bathroom. I hear the water running. Crossing fingers!"
"He's out and getting dressed. Hair is wet and he is happy. Woohoo!!"
"DAMN! He faked me out! All he did is wet his hair to fool me. He still stinks!"
God bless her, she did everything she could to get him to shower that day, even told Tom to delay his visit hoping all she needed was more time. The way Dad treated her during that time was deplorable. He tried to make her smell his armpits to prove he showered. He got a resounding "NO WAY!" to that. It was almost like Dad was punishing her for trying to get him to do something against his will. The more she insisted, the harder he pushed back until he got in her face and demanded that she leave. He then sat down at the kitchen table with his back to her as she did one last clean up of the counter. Hillary saw she was getting the silent treatment and approached him from behind. She hugged him gently and said "I love you, Daddy" and walked out. He sat there like a stone, wordless.

Hillary was very upset as she drove away. She stopped at Walgreen's to pick up a prescription. Suddenly her cell phone started ringing. It was Dad. "Hillary, do we have a problem?" he asked in a worried voice.
"No, Dad. We're okay. I'll still visit tomorrow", she reassured him.
"No, I mean did we have a fight?" he asked.
"Yes, but we're okay. I love you, Dad. I'll see you in the morning."
When she told me about it later we were both amazed and hopeful that the incident upset him that much that he was able to hold on, maybe not to the memory itself, but the emotion it provoked for a solid fifteen minutes.
The next day she decided to try again. It still took a couple hours but she finally wore him down promising a dessert if he would just shower. She followed him all the way in, put a hand towel on the floor of the shower so he might be less worried about slipping, started the water and made sure it was nice and warm for him and left him to do his thing. She occasionally peeked in just enough to confirm he wasn't faking her out again. He was really doing it...she could tell because of all the cursing when he would drop the soap. Mission accomplished! We were all so grateful to her for getting him to do the one thing no one else could.

I am sure we all secretly feared all shower battles would be like this from now on. We brainstormed ideas for helping Dad to not be too afraid of falling. I figured the main issue was the dropping of the soap. That in itself was a legitimate hazard. "I know it's usually a gag gift but what about soap-on-a-rope?" I suggested. "Actually, that's probably a great idea!" Hillary said. So I set out to find some and actually found something even better: the SoapSaver. It was basically a mesh bag for soap that cinches closed. I bought one and lengthened the cord using the drawstring from a pair of sweatpants. We attached it to the shower head and put the soap bag on his shower chair. With that issue addressed, guess who was assigned the next shower attempt? Yep...yours truly.

My Aunt in California died a week after Dad's last shower and Hillary was nominated to attend the funeral as our family representative. The night before she had to leave she sent me a text right before I arrived at Dad's house begging me to get Dad to shower as she had to take him to the doctor in the morning and then hop a plane that afternoon.
Admittedly, after hearing how it took her two days to get him to shower only a week  before, the idea that I could do it in three hours seemed a bit unlikely. I promised to try, braced myself for the storm and started my visit.
I made dinner and put The Avengers in the DVD player. Dad finished his dinner and I stopped the DVD.
"Okay, Dad, the movie is about to get really good but you promised Hillary you would shower tonight so let's get that out of the way", I said enthusiastically. "I have an apple pie in the oven. If you shower now, it will be ready by the time you are done and we can have apple pie and watch the Hulk beat the shit out of Loki!"
He protested a bit, "Okay, I'll do it later".
I bounced around like a fitness trainer in front of him, "C'mon, Dad! You promised Hillary...and how can you say 'no' to fresh out of the oven apple pie?" (Apple pie is his favorite. If any bribe was going to work, that would be the one.)
"Well, that's true..." he said, his stubbornness starting to crack.
"C'mon, Dad! Heave HOOOOO!" I cheered, "You can do it, Daddy! HOOOWAA!!" bounce-motioning him to hoist his aging keister out of his favorite recliner.
"Why are you such a PEST?" he demanded.
"Pie and Hulk for shower, Dad. How can you pass that up?" I cheered.
"I'll just take the pie", he said.
"Nope! No shower, no pie. I'll take it home to Mike if you don't shower", I threatened. "Come on, Dad. You have a doctor appointment in the morning. You don't want to be stinky for a colleague, do you?"
He sighed. I could tell he was ready to give in.
"Pie is in the oven, Dad", I reminded him.
"What kind of pie?" he asked.
"Dutch apple! How can you say no to that?" I demanded.
He sighed again but I could tell I had said the magic words.
"Okay. PEST!"
He hauled himself out of his chair and I bounded down the hall into his bathroom as he shuffled into the bedroom. I set up the SoapSaver on the shower chair, put down another hand towel and started warming up the water. Then I went back into the bedroom insisting he hand each item of clothing to me as they were removed. He tried to keep his undershirt on but I felt if I left him in anything more then briefs he would just get dressed when I left the room. I grabbed all the clothes and threw them in the washer and returned to the bathroom where he was standing in his briefs.
"I don't have to give you these, too, do I?" he asked.
"No, I'll leave you your dignity", I replied. Then I showed him the safe setup in the shower; No reason to worry about slipping and the new soap rope would help should he happen to drop the soap. I also pointed out the clean clothes I laid out for him on the counter so he could dress before even leaving the bathroom. He seemed much more comfortable with the idea after that.
"Okay, now GET OUT!" he demanded. I worried that he might try to fake me out but after peeking a few times I realized he was really doing it...and in record time, too! It took approximately half an hour from the time I stopped the movie and started my strategy to him stepping into the stall. Big win!
I sent messages to Hillary and Paula and they sent lots of thank you's calling me "The Bomb" and asked how I had done it. I explained: cheerleading, bribery, potential embarrassment and a well placed guilt trip.
It  took a while for him to finish, dress and comb his hair and my visit ran quite long that night but I didn't mind. He deserved his pie and movie for not giving me much of a fight.
I have decided to commit myself to one shower a week as my duty, but I noticed something else that night. The pile of  "clean" laundry on Mom's side of the bed was questionable. Although I found clean clothes for him to wear I also discovered that some of his dirty over shirts had wandered into the pile.  It dawned on me that I could not tell with any certainty how clean most of the clothes in the pile were. Not my job? If not mine, then whose?

As I caregiver, I submit that every job is my job whether I think so or not. The next week I assigned myself the bed pile. Paula and Hillary are doing enough. Lightening the load IS my job. I spent a whole day just washing the "questionables", putting away the clean items, changing and washing Dad's linens and turning his room back into a bedroom. He sat and talked with me as I worked, I sang silly songs like Iko Iko, causing Dad to call me a weirdo. The time passed quickly.  When I was down to the last load I took a picture of the bedroom with Buddy smiling in the foreground and sent it to Paula and Hillary. I captioned it "Buddy wants to know which side is his". They were so happy!
I finished the final load and sent Paula one last text.
"Well, it turns out I owe dad three white shirts...and a pen :/"
"Lol! That's okay, we needed Christmas ideas for him anyway. Thanks for everything, Erin!"
"My pleasure. It's my job",  I responded.

 (To be continued)

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

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

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

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

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

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

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


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

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

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

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

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

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

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)

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)