This year I resolve...

...to be more patient, to take a step back when I start to get frustrated. I will take a deep breath and begin again.

I resolve to look for the little things such as laundry, toothpick patrol, and bathroom checks to take some of the pressure off my fellow caregivers...and to never say "It's not my job" or leave a mess for the next person.

I commit myself to making sure that Dad has at least one shower a week during my time and to stand my ground and not allow him get around basic hygiene.

I will continue to look for the humor and levity that makes looking after Dad a little easier for both of us.

I will appreciate all that my sisters, brother, nephew and their spouses do to make Dad's life better. We are a team and every contributor is important and valued.

I will continue to reach out to others who may feel alone in their struggles as caregivers in the hope that there is strength in camaraderie and the sharing of stories, ideas, information and compassion.

I will remember that I am human and likely to stumble, become frustrated and want to escape...and I will try to forgive myself.

I will be grateful for my husband and daughters for all of their love and support...especially for Mike, who taught me that marriage is not 50%-50% or even 100%-100%. Marriage is 100%-0. In every marriage there are times you cannot give 100% and your partner carries you through it. Mike, you have carried me so often, giving your 100% when I could do nothing and you taught me the value of patience and humor in the face of despair. I promise to be your 100% when you are lost or need support. We can get through anything together.

Happy New Year to all my readers and friends!! May 2014 bring joy and hope to all of your lives!!

Mad Chick in the fight against Alzheimer's t-shirt....

http://www.zazzle.com/mad_chick_in_the_fight_alzheimer_s_disease_t_shirt-235194185125346381?rf=238855121280653846

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!

The Veneer of Resistance...

Have I mentioned my Dad's stubborn streak? I'm pretty sure it runs in our family. It is almost impossible to get things done without bribery or blackmail but the things he resists have changed over the years.

I recall having the first major disagreement with him in quite a while a few years back when my nephew from Ohio and his wife came to visit. We hadn't seen him in years so it was a big family event. We had to car caravan to a remote but very highly recommended outdoor Tex-Mex restaurant as they wanted to try the local flavor. I was assigned to drive Dad, who still wanted control of his own driving, and we were trying to transition into giving that control to others. Knowing the drive would be difficult for me and dangerous for Dad to even attempt, I proceeded to try and convince him to get into my car. After arguing about who would drive for about ten minutes, he finally got in but gave me the silent treatment for the entire forty five minute drive. I tried several times to strike up a conversation but he just sat there looking out the window, so hard for him to give up control, especially to his youngest child. I know he was safer with this arrangement but resented that, of all the people who could have driven him, the task was assigned to me. We all still had a good time that night,  and seemed like he forgot how mad he was...right up until we drove home. Back to the silent treatment. I think just getting back in on the passenger side was enough to jog his memory. It occurs to me as I write this that, even then, things that upset him seem to stick in his memory longer, much like the more recent shower argument with Hillary. On the up side, the bigger impact makes future arguments shorter and more productive. On some level he really does not want to upset the people he loves and would much rather find a way to give in while maintaining the veneer of resistance.

Continued dispute has become part of the routine. He used to resist his meds a lot more but now instead of giving him a choice I pop them directly into his mouth. Once when I had a visit that overlapped with Hillary's she saw me walk up to him with his next dose of pills and just say "Open!" He opened his mouth, I popped them in and handed him his drink. This surprised her and she asked, "You don't just give them to him, you put them in yourself? Why?"
"Because", I explained, "He palms them if you turn your back".
"How do you know?" she asked. I knew she knew he was doing it, too, but I guess she wondered if I had proof.
"I have found them under and in the chair, and no one could swallow a handful of pills as fast as he tries to pretend he does without a drink to wash them down. I also think he pockets them when he can. I don't give him the chance anymore and he doesn't really resist, either."

Back when the schedule first started, the hardest part was getting Dad to do his eye drops. This battle was much harder then the meds have ever been...of course that was also before I stopped giving him the option to do them himself. It started when Paula sent all of us a group email letting us know that Dad was not taking his eye drops as regularly as he should and it was apparent at his last eye appointment. We all needed to make more of an effort with the drops.

The next time I went to Dad's house, Mike came with me and we watched a baseball game together. About halfway through the game I decided it was eye drop time....Dad decided it wasn't. He absolutely refused no matter what  I said and began the "I'll do it later" fib the he has tried so often even to the present day. I wasn't as persistent then...just vented my frustration in text messages to Paula.  She would console me with, "You can only do what you can do". Still, I knew I had failed.

After a few more visits I developed my "dessert for eye drops" approach. It worked...mostly...but it took forever for him to be able to hit his own eye and there was always a lot of swearing. Still very frustrating. One day we had a big family lunch at Dad's house and I saw Paula do something I had never considered...Paula made Dad, who protested the whole time, put his head back and she put the eye drops in herself. She wasn't mean about it, just firm, ignoring his griping and telling him "Just put your head back, Daddy. These are the easy ones". I was amazed and enlightened by this approach.
"I can do that???" I thought. Man, wouldn't that be easier! Dad was much stronger and faster then and I have to admit his size and strength intimidated me as much as when I was a child so the thought of actually telling him what to do had never even remotely occurred to me. Okay, then, I would try it.

I can not recall exactly how it worked out but that became the routine: promised dessert for eye drops, insistence on putting the drops in for him, mild resistance and then success. Other battles have proceeded exactly the same way. Start with failure, find a bribe, develop a routine, eventual success. My approach has become increasingly bold as the years have gone by, most recently peaking with Thursday shower night. My approach, once hesitant and somewhat resentful, has evolved into a comical fitness instructor approach which seems to keep the mood light and make him feel less forced into something he would rather not do. It works for me and ultimately he is better off if I stay up beat.
After our difficult visit Wednesday last week I came home that night distraught. "He's going to die in that chair if he won't give up this need to see us to the door", I said to Mike, sobbing. "We all know he just goes back to that chair when we leave." It may have been hysterics on my part but it felt very real at the time.
Dad's swollen feet are somewhat under control but he needs to be moving around more. I asked Mike for his help the next night, shower night. I have a theory that if a man is present, Dad will resist more. It's just an observation that I've built up over time. I can understand not wanting to take orders from a tiny woman in front of another guy so in the interest of getting the job done, I asked Mike to make sure I got him into the shower before he and Allie arrived. It would just make things easier and more pleasant. Hillary still was there with her boyfriend but they were on their way out. Although it may have just been an impression, it seemed he stopped resisting my clowning blackmail as soon as they left.
After my usual cheer leading, playful taunting and bribery I got him to shower and began dinner. Mike and Allie arrived just as dinner was ready and Dad was finished dressing. Perfect timing! After we finished I told Dad he needed to take a walk before he got his pie. Surprisingly, he didn't resist and we went out into the already dark back yard. I turned on the flashlight app to my phone and let Dad know it was just to look for "land mines" left by Buddy all over the yard. We had a slow but successful walk, narrowly avoiding a few little steamy piles usually prompting Dad to ask what I was holding that was lighting up so brightly...it was obviously not a normal flashlight. We made our way cautiously up the steps and finally sat down to enjoy  dutch apple pie and a movie together. Not too far into the movie, Dad fell asleep. Since we were all quite tired I motioned to Mike to take Allie home and I would attempt to get Dad to bed to put his feet up. Before doing this I decided to make his bedroom a little prettier, changing the sheets the white thermal blanket on top for nicer sheets and a beautiful red and gold Christmas comforter, throwing the old one and the sheets in the washer. Then I began my final task of the night.

"Daddy? I think you're too tired for the rest of this movie. How about we go to your room and do your night time eye drops? We can finish the movie tomorrow", I asked, cautiously optimistic.
To my surprise he didn't resist at all.  "Okay, that's sounds good", he said sleepily. "REALLY?" I thought, "Cool!!"

I held his elbow to the bedroom, still no resistance. Took off his shoes, pointing out how comfy the bed looked, to which he nodded with a sleepy smile. Helping him position his feet, I then put his eye drops in and fibbed, "It's okay to go to sleep now, Dad. Mike and Allie are in the car waiting for me, and I have my own key and can lock your door. I will call you when I get home."
He nodded, "Okay."
"Good night, Daddy. I love you", I said kissing his cheek. He nodded again, eyes still closed. I ran out, grabbing my purse. It had worked! He didn't follow me out...no lights came on as I made my way up the driveway. A vast improvement over the night before. Maybe it won't be the norm but I felt the glow knowing he was safe and in his bed.

To be continued...

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...

Faded photos and stained glass windows...

I have heard many people say that if they were escaping from their home because of a fire, flood or other disaster and could only grab one thing it would be their family photo albums. The early photos of my parents are almost all black and white. Mom had this beautiful face, nearly black hair and a Grace Kelly figure and I have always thought that Dad resembled a young Elvis Presley. I am not sure what the story is behind their wedding photos but the few that exist have the word "proof" punched into them. Maybe they were so poor in the beginning that they couldn't afford an album or maybe their wedding album was lost in one of their many moves. Whatever the story, those pictures, even in black and white are extremely well preserved. I love looking at them and what a beautiful couple they were from the very beginning. Through the years, their lives were documented in photos and a few precious videos.

When I was in grade school the Polaroid instant cameras were very popular. These cameras didn't put out the best quality pictures but we sure had a lot of fun playing with them. I remember getting a yellow nightgown with little orange birds on it for Christmas and my mom making me pose for a picture. After waiting for the picture it turned out that the only part that did not develop was my FACE. I decided that just wouldn't do so I drew a face on the picture. My mom saved the picture and it still exists in an album at Dad's house. We saved thousands of photos in a huge drawer in my parents dining room for years until Mom finally got a wild hair and organized all of them by year and even captioned many of them. I remember looking at the album containing the last two years of her life and wondering, looking at the many pictures of her, at what point was her condition so advanced she could no longer be saved. I know it is a futile effort but can't help thinking something could have been done so much sooner if she had not been so stoic...if she had not appeared so healthy. I remember looking at a picture of her holding my cousin's two year old son on her lap helping him eat a popsicle just a few months before her diagnosis and thinking, "She was already sick then and nobody knew it". Wondering which picture was the point of no return could drive me crazy. It's a cruel exercise in self punishment, and yet I can't help it.

Now my Dad is sick and we know it, in fact have known it for quite some time. There is no definable point of no return for his condition. Alzheimer's is a slow, ruthless illness, it's early onset subtle and often overlooked. Perhaps someday we will know for sure it's cause, how it may be prevented, and if it may successfully be treated but until then there is no way of knowing exactly what occurred to put my father in the life he is presently living. There is no one picture at which you could look and say, "Yes, that's the one...that's when it all started".

Our day to day observations continue as his illness advances. I am trying to teach my girls to be compassionate and loving, to try not to get frustrated with his repeated questions. Allison came with me on a recent visit. I made sure he ate and took his meds. Allie volunteered to feed the animals and talk to her Grandpa while I wrote a daily entry in the family journal. As I sat writing, I overheard Dad asking her the same questions over and over:
"What's your name?"
"How old are you?"
"What school do you go to?"
"What grade are you in?"
"What's your name?"
"Who's that in the kitchen? Is she your mom?"
"Who's your dad?"
"What's your name?"
I was so proud of her. She took it all with a smile and, like me, trying not to laugh each time he asked her name. After a while he laughed, too, and said, "Why do I have the feeling we've already been down this road?"
"It's okay, Grampa, I understand", she said hugging him. She would never want him to feel silly for repeating himself. Allison is such an old soul. Like me with my dad, she loves to hang out with Mike while he is engrossed in his hobbies. He collects movie memorabilia, and likes to paint movie models and statues. I don't know if she will ever be into those hobbies, herself, but someday she will understand her dad's interests and appreciate them as part of who he is. For now she sits with him in his "man cave" while he works on his models and watches Sci-fi movies much the way I would find ways to entertain myself in Dad's garage so I could watch him work.

I suppose many kids don't understand their parents' passions when they are growing up. For years Mike has enjoyed all kinds of science, history and nature shows. He records series after series on the DVR filling up the memory with all of his favorites. One time the DVR was so full Kelly and I decided to play a practical joke on him. I taught her how to re-name all of his shows. "Ancient Aliens" became "It's Aliens, Man", "Mythbusters" became "Blowing up stuff", "Modern Marvels" became "Dad's Boring Show", "How the Earth was Made" became "Why, Dad, Why?". Mike was less than amused but we thought it was funny as hell.

Having been exposed to both of my parent's many pass times, nothing about Mikes hobbies and shows seems particularly over the top. Actually, engulfing one's self in an outlet seems, not only completely natural but necessary for developing a personal identity. I, myself have had many self taught hobbies over the years although only recently has writing become one of them.

As I have previously mentioned, my mother learned how to cut stained glass windows. Several of them still decorate the inside of Dad's house. I often wondered where mom gained inspiration for her various endeavors. Like Dad, Mom was never satisfied with a life of leisure. She was always busy with some creative project, whether it was sewing, tiling, painting, embroidery, ceramics or stained glass. Of all of them, the stained glass stood out for two reasons: the gorgeous finished products, obviously, and also the havoc that the soldering irons wrecked on her beautiful hands. For some reason the burns and blisters were worth it to her...badges of honor for her hard work.

We collected so many photos over the years: Dad's airplanes still in the building process, Mom arranging bouquets for Paula's and Hillary's weddings, me or one of my siblings sitting in the skeleton of a fuselage, a table full of little girls Mom was teaching to sculpt green ware, a picture Dad took of Tom with Eddie perched on his arm, Mom and her daughters in their Easter dresses standing in the breathtaking garden she planted and nurtured all on her own, etc. Photo after photo of them using every minute of their lives with real purpose and passing that love of life and creativity along to their children and friends.

 One of the problems with looking at more recent photos is that I get lost speculating "When did Dad/Mom start getting sick?", losing the entire point of taking the picture in the first place...to capture the moment, to record the life, to appreciate who they are and how they lived.

The extraordinary man that is my father is slipping away and as his memories fade it would be easy to think of Dad's life like an old, discolored Polaroid photo, losing it's essence and definition...but I would prefer to think of Dad's life like a stained glass window, a work of art with light streaming through it, perhaps losing it's brilliance as the sun goes down and yet no less valuable for the details no longer visible as the lights grow dim. Time will go on but we can still find ways to shine the light through the colored panes and show the wondrous example he and my mother set for us all.

To be continued...

His beautiful voice....

From the time I was a child I can remember Dad playing a radio as he worked building airplanes in our garage. The classical, big band and jazz melodies would drift out of the garage and along with them my father's beautiful tenor voice. He was never so happy and at peace as when singing along to the melodies of his favorite stations and using his mind to create a new contraption. I can recall several times sitting just outside the door of the garage to listen to his beautiful voice. He would be absorbed in his mind and music, always dressed in an old, green scrub top and well loved, paint and glue encrusted jeans. Sometimes I would go in and volunteer to sweep up saw dust, metal shavings and stray hardware just to be part of his creative moments.

I have no doubt this was a soul soothing ritual that continued long after I grew up and moved on to have my own home and family. I wonder if the disaster of the burst pipe that destroyed his workshop had not occurred, might we begin our visits hearing his voice soaring out of the workshop rather than finding him sitting watching a show he didn't choose for himself and probably isn't even following. Might the loss of this outlet be responsible for his rapid decline over the past two years? We can only speculate but I suspect simultaneously losing his music and his hobby may have accelerated his condition.

Movies with familiar themes and music are always a good way for us to connect. We never silently watch a movie together. There is always lively discussion throughout, sometimes losing the plot but not reducing the enjoyment. Occasionally I will take a chance and bring over a movie that I am not sure about and his enthusiasm will surprise me. One such movie was the new King Kong with Naomi Watts, Jack Black and Adrian Brody. This movie was a home run from the opening scene because the movie starts with "I'm Sitting on Top of  The World", sung by Al Jolson, Dad's all time favorite musician.
"Wow!!" he exclaimed,"You just can't start a movie any better than that!"
We had tried to see it in the theater but because of technical difficulties about a third of the way through the theater gave us a refund. Still, I knew when I brought the DVD to his house, it was going to be a great visit.
His enthusiasm for Jazz, classical and Irish folk music was passed to all of his children. When I was still in grade school, I often heard Paula doing dishes in the kitchen and singing "Irish Eyes", "Irish Lullaby", "Danny Boy" and a song that Dad used to sing so fast and that had so many names we just called it "Renegan Rock in a Bowl". As it turned out it was really called "Dear Old Donegal"....but we still called it "Renegan Rock in a Bowl".

Dad griped about our rock music and country and western all the time, but we all watched the "Lawrence Welk Show", "Sonny and Cher", and the "Donny and Marie" shows together as a  family. It's funny after having been exposed to such a broad musical spectrum I often felt that Dad and I would never find musical common ground. That changed with the popularity of New Age music. I earned my drivers license at age 18 and often had New Age tapes in my car. One day Dad decided to coach me on highway driving. I popped in a tape and began our lesson. A few minutes into our drive I was surprised to hear Dad remark, "Who is this? I've never heard this music. It's really beautiful!" I was so pleased I almost forgot the purpose of the drive and started talking about the different tapes in the glove box. "That's Spencer Brewer, 'Tomorrow's Child'...want to hear some other things?" I offered.
He agreed and I popped in a few more tapes...Yanni, Vangelis and Kitaro. Finally, a musical bridge!

Another connection was made when I spent the entire year after "Amadeus" hit the theater listening to nothing but classical music...not just Mozart but everything I could get my hands on. I was fond of Mozart but have to admit I'm more of a Beethoven girl. This came in handy recently when I was watching a Columbo with Dad and a classical piece was playing in the background.
"I think I know this one", he said (I knew it was a lead to a quiz) "Is it Mozart?" he asked.
"No, his pieces were more intricate. The way this one flows I think it's Beethoven", I replied, smiling to myself.
"I think you're right! How did you know that?" he asked, obviously impressed.
"Oh, I know a bit about the classics", I said proudly.
"Well, way to go!" he exclaimed, with a bit of pride as well. It's nice, the little connections we find accidentally, even now.

Since it's Christmas time I hear all of the holiday songs being piped through different stores. Many I have heard a thousand times but have never observed and couldn't tell you the artist. I can actually remember at age twenty two when I was working in a mall at a record and tape shop (that is a very old fashioned sentence!) and I heard over the store speaker a child's voice singing "I saw Mommy Kissing Santa Claus". I remember thinking, "That kid is phenomenal! I know it's not a new recording but I wonder who that is?" Later I found out what I'm sure many of my readers already know...the singer was young Michael Jackson. With so much exposure to music over the years, you would think some things would be common knowledge. Unfortunately when Dad quizzes me about holiday songs, I'm not always right and I get the expected groan/slump/"why me" reaction. On the positive side, Dad's musical interest has obviously not faded. Hillary must have taken a cue from this because she had a recent brainstorm.

Hillary fixed the radio intercom in Dad's house and now has his beloved classical music playing softly all day. She has adjusted the settings so it is softer in the bedroom and a bit louder in other rooms. Dad has his music back. I am sure it provides him comfort and perhaps reminds him of earlier days in his workshop, building planes, talking to Eddie the owl, tinkering with his many projects and singing along.
What a wonderful gift Hillary has given him: a soul soothing reminder of better times.

To be continued...

A sense of camaraderie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued by ALL OF US... 



 

The Battle of bathing, toothpicks...and the comfort of "one ringy dingy"!

Have you had to coax a reluctant child into bathing regularly? I know from personal experience with Allison's ADHD, bathing is a constant concern. It is not that she doesn't like to bath or be clean, she simply doesn't think about it unless we tell her. As she has gotten older she is getting more and more used to the bathing ritual and less resistant to suggestions about bathing and grooming. She gets better and better as the years go by and now as she is about to enter junior high I believe all of the reminders and training are starting to pay off. Alzheimer's patients are exactly the opposite situation. It begins with noticeable self neglect and escalates into a constant battle.

As I have mentioned previously, Hillary battled with Dad for two days trying to get him to shower after weeks of  avoidance. I don't know what the difference was between her battle and mine but I suspect that he had a deep emotional reaction to his first fight with her that the second caused him to give in faster, not wanting to alienate someone who obviously loves him so much, so unconditionally.

So far I have been  successful getting him to shower twice over two weeks. Each one took approximately a half hour to get him to get from recliner to shower but the second was considerably harder as he fought me the whole way. Dad has used his height and intimidating manner his whole life and, up until now, it has worked like a charm. As before I used a bribe, cherry pie in the oven; a threat, no shower, no pie; a potential embarrassment, medical appointment (that did not exist); and a potential broken promise, "You told Hillary you would shower tonight" (also a white lie).  I cheered him on the whole way and jokingly poked fun at him hauling his not existent butt out of his chair. This time he did a lot more bitching, loudly ordering me out while he was "getting ready" but I knew he was trying to fake me out and I told him so.

"If I leave the room and you are wearing anything more than briefs I know you won't shower 'cause you faked Hillary out the same way! All you did was wet your hair." I said, calling his bluff.
He got five inches from my face and tried to stammer out "Do you know how much....how much...how...", unable to complete the sentence.
"Yeah, you're over a foot taller then me...and I'm a lot faster!" I stood my ground.
"When did you get to be such a BRAT??" he demanded as I started removing his outer shirt.
"I was taught by the best! I'm not leaving. All of the crud you're wearing is going in the washer while you shower."
"OUT!!!" he demanded.
"Just give me your stuff, I'll leave you your dignity."
He finally plunked down on the bed and started removing his jeans. I got down and started taking off his shoes and socks...not an easy task with his swollen ankles. He protested the entire time, but I am not sure how he got those socks on or how he could have removed them without assistance. Poor Dad could really use a toenail trim but that would have to be another time. More griping and complaining but eventually I got everything but his briefs. Again I showed him the shower set up to make sure he knew he could safely take his shower and warmed up the water for him. I promised not to peek but told him I would be back for his briefs when I was sure he was in the shower.

Deep down I really thought he might try to fake me out but when I took a quick glance in and saw him sitting in his shower chair scrubbing his hair. Second success! I announced I wasn't going to peek and ran in and grabbed his briefs. All clothing safely in the washer and set to power wash as soon as he finished.

When I had changed his bed the week before I found Dad had developed a hazardous toothpick habit. At least 15 toothpicks littered his sheets and blankets and several more came out in the washer causing me to have to pick them out of the drain holes. This worried me that he might roll over on one in the middle of the night or might jab himself with one if he sat down too hard. Not only would that hurt like hell but the toothpick could splinter into his bloodstream. I felt from now on I should do a quick scan of the bed and fold any laundry in the dryer each visit to insure no toothpick hazards got away from me.

It took him a while to come out but the shower was well worth it to him. We watched Jurassic Park and ate fresh out of the oven cherry pie together.

He was so sweet to me, more so then usual, as I left, hugging me multiple times. As usual I promised to try to be good as long as he promised no wild parties. Of course, the final promise of "one ringy dingy" to make sure I made it home safely, then I triple honked as I drove away watching as he waved with both arms.

Funny, the "one ringy dingy" joke seems to have caught on. I was talking to Hillary about it a couple of weeks ago, about how important a pattern of "goodbye" can be to an Alzheimer's patient and the step by step  goodbye I always follow with Dad. Apparently, Dad has started to say "one ringy dingy" to her as well. She had no idea where that came from until I reminded her of Lily Tomlin's operator and how I had started saying that to Dad several months back.

This week I had a medical procedure and Mike stepped in and took my visit for me. He also reported back a farewell of "one ringy dingy". I love that Dad likes that goodbye. Feels like he remembers me even if I'm just the "little kid" or the "wiseass" and not Erin anymore. I guess that kind of makes me "one ringy dingy". That makes me happy...very happy.

The slow leak...

In prior posts I have tried to emphasize how important Dad's residence is to his survival. Knowing that he has a profound emotional attachment to his house, specifically because it was designed by my mother, it is the general consensus of all of his caregivers that his lifespan at this point hinges on how long we can safely keep him in his house with his best friend, Buddy. Because of the strong opinions of my two oldest sisters I have been hesitant to bring up two ideas. The first: a Daddy Cam (like a nanny cam) that we could check online to make sure he is safe during the night. The second: an Autoalert pendant in case of a fall. In light of his escalating memory issues I felt it was finally time to present these two ideas.

At first I sent it to Tom after asking him to exchange a shift. He agreed to the shift change but no answer about the Daddy Cam. Then I sent it to Hillary. She was sick with an eye infection so I didn't expect a reaction immediately.

Finally I sent it to Paula. I truly thought she would be resistant but was surprised when she replied back about the Daddy Cam, "Great idea, Erin!" This was surprising and encouraging and I decided to spitball the AutoAlert as well...what she replied stunned me. For years Paula has been Dad's primary caregiver, the captain of our ship guiding us through his care and ultimately prolonging his life since Mom's death. Of all people, Dad owes his survival to Paula. So what he asked her shocked me beyond belief.
Paula's text to me read: "Today he asked me 'How do we know each other?'"
I was devastated for her. My response was probably the dumbest thing I could have said, "Awww, I'm so sorry! If it makes you feel any better he has only called me by name once in the last year."
Of course it didn't make her feel better! It wouldn't have made me feel better in her position, either...actually it probably made it worse. What I really thought after letting it sink in was "I wish he had said it to me or Tom...any one but Paula". She had been not only his daughter but his right hand for years and today he didn't know how he knew her...only that she was familiar. For the rest of the day I felt like I had a piece of lead hanging in my chest...this weight, heaviness that I couldn't fully comprehend.

It finally dawned on me: a part of Dad died today. That is why Paula was so receptive to the Daddy Cam idea. If he doesn't remember his own daughter eventually he won't recognize any of us, he won't know that he is in his own home, he could wander off. The revelation of not recognizing Paula implies a very dangerous future if safe guards are not  put in place. I fear this journey is about to get very difficult.

I finally heard from Hillary. She said she had also thought about the Daddy Cam and as long as it didn't include audio (for privacy reasons that I can understand) she was also for the idea. Apparently there is even a night vision cam available so we can keep an eye on him when he sleeps or wakes up in the middle of the night.

In just a few hours time I have thought a lot about the loss Paula experienced today and the implications for Dad's future. Mike asked me a tough question: what is worse, losing Mom over the course of approximately ten weeks or losing Dad over years. Truthfully, losing Mom was excruciating for us but I think far kinder to her than her fate could have been. God's kindness to her was putting irresponsible medical staff in charge of her airway. That tragedy probably saved her years of pain. Dad is in no actual pain but is directly witnessing his own brain death; He has to actually watch his most prized possession, his extreme intellect, slowly leak away starting with a little forgetfulness and culminating in the inability to feed, wash or speak for himself, and the more advanced his condition, the fewer people he will recognize leaving him utterly alone. I told Paula, "It is so sad, I know. We will just have to love him through it". My mission today changed; This disease is unforgiving, relentless and at the time of this post, incurable. If a miracle happens I will embrace it with every fiber of my being but if not I will hold his hand to the end, just as will Paula, Hillary and Tom. That is our duty and our honor to the man who has loved and cared for us all of our lives. He may not recognize us but he will know he is loved.

I will continue my research, recipes,  and approaches that will ease his journey but ultimately I have to figure out how to save my daughters this pain. Given that this is in my family genetics, that I believe that my father's mother had Alzheimer's and knowing the burden we all share caring for Dad, I don't want my children to have to care for me in this manner. They will not have to endure this illness or or the slow loss of a love one if I have anything to do with it. The only acceptable solution is prevention. However long we have to cherish and protect Dad will not be the the entire journey. This journey isn't over without a cure for Alzheimer's.

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)

DHA and micronutrients may prevent brain shrinkage with age

DHA and micronutrients may prevent brain shrinkage with age

A Thanksgiving dessert recommendation for your Alzheimer's patient

http://www.tasteloveandnourish.com/2013/05/09/blueberry-crisp/

I made this dessert keeping in mind that my dad is addicted to sweets and we need healthier alternatives to brownies and cookies. Keeping in mind that coconut oil and blueberries are recommended for Alz patients I substituted coconut oil for the recommended butter. If anyone wants to try the same, it is a 1:1 substitution. This crisp is delicious and goes great with frozen yogurt. Every bit as good if not better then blueberry pie. Also interesting is the potential of flax seed and walnuts for protecting and preventing brain degeneration.
Happy Thanksgiving!! Peace, love and joy to all!!

She-Hulk Gripe session!!

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

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

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

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

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

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

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

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

• Leaking sink in the kitchen causing swollen floor boards.

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

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

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

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

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

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

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

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

Buddy, the Unlikely Hero!

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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