Another grooming difficulty…but it’s a fun one

Dad is having trouble with shaving. He has been clean shaven his whole life and very particular about looking clean and well groomed but as his condition progresses hygiene has become a major issue. Of less concern is that his shaving has become less accurate and he mostly just shaves his neck and the front of his face. I don’t think anyone really minds, not even Dad. Today I decided to have a little fun with him.

Allison came with me. We watched the Avengers and all three of us were cutting up throughout the movie. It was a lot of fun and was a great time for a little practical joke. As Allison and I were leaving I said, “Hey, Dad! I forgot to tell you I found a picture of you on the internet today”, and pulled up this picture on my phone:

All three of us laughed. “Ole Abe, huh?” he said with a chuckle, “How’d you get to be such a wise ass?”
“I learned from the best”, I told him.
It was a great visit!

To be continued…

Window into his world…

There are two questions that have kept me preoccupied lately: Who’s there? and How’s your father? You wouldn’t think these two seemingly unrelated questions would take up much space in my mind.  For me, though, these two questions are directly related. In fact, the first question kind of answers the second.

Any time I go visit friends or my in-laws, I am usually asked “How’s your father?” I know it is concern and love that prompt this question and am not upset by it. That said, I am never sure how to respond. A truthful response would be a major downer to start a social visit. On the other hand saying “He’s doing great” would be an outright lie and would likely prompt more questions. A few months ago I began responding by simply smiling and saying “He has Alzheimer’s”. In other words, “It is kind of you to ask. He has an incurable brain disease and if you really want to hear more I will tell you, but be prepared that he has not made a miraculous recovery”.
There is some irony to that repeated question. In a way it is like the loops that dad experiences, making the same statements and repeating the same questions over and over. The little devil on my shoulder almost had me convinced to start changing my answers to the question “How is your father?” in the same way I did when Dad would get caught in a question loop.
Answer 1:  “He’s decided to take up base jumping”
Answer 2:  (gasp!) “Oh no! I left him at the zoo!”
Answer 3:  “He’s fine. He’s in the car.”
I know, that wouldn’t be nice and I’d never do it…but it’s entertaining to think of new answers. Really the only appropriate response without going into detail is to say he is comfortable and well cared for, followed by, “Thank you for caring”.

Up until a month ago, although he had stopped calling me by name, he still recognized me…but more things started fading. Hillary showed him a photo album in November. She told me he didn’t recognize Mom, his parents, his brothers, and, although our names were familiar, he wasn’t clear on the pictures of his children either. The one exception was Tom. When she showed him Tom’s picture and asked if he remembered who it was, his response was remarkable.
“Well, he looks like me so that must be my son”, he replied. Hillary and I were encouraged, feeling that this was a good sign. He was still capable of deductive reasoning. Sadly, disappointment was around the corner.

When you were growing up, how many “Knock! Knock!” jokes do you think you heard? Dozens…hundreds, maybe? They all start the same with the hopes of eliciting a laugh, a smile or at least a good humored groan….But when “Who’s there?” is asked seriously by someone who is looking right at you, smiling can be difficult.  Dad stopped calling me Erin about a year ago. In that time he has only called me by name once without prompting. Instead he has been calling me “the little kid”. A few weeks ago he stopped calling me that. Now when I walk into the room he looks at me and says, “Who’s there?”
“It’s Erin”, I announce with a hopeful smile, but I can tell it’s not ringing any bells.
“Erin!” he says brightly, trying to hide that he is stumped.

As the evening goes on and I run around making dinner, folding laundry, getting him to take a shower, or whatever else needs to be done, he eventually gives in and asks for a clue.
“Are you one of my kids?” he demands in an irritated voice that implies a sarcastic, “Can I buy a vowel??”
This question is easier to take because the fact that he has included me with the other “kids” indicates they are probably getting the same question from time to time.
“Yes, I’m the one who looks just like your mother, only I’m blonde!”
“Well, that explains a lot!” he replies with a chuckle. At least he still has his sense of humor.

It’s better to help him tolerate whatever new situations develop with a smile.  Dad has been so used to knowing more than everyone in the room that having Alzheimer’s must feel like the walls are closing in on him. With each day he wakes up with fewer and fewer facts and a growing number of question marks. One day he will probably wake up surrounded by nothing but question marks. How frightening it must be to witness his world shrinking around him. His comfort rests in the fact that he is surrounded by those who love him. Even if he can’t quite remember names or how he knows each of us, he is aware that all of our faces are familiar and he is grateful for the familiarity. The one positive thing I can say about Dad’s condition is ultimately the most important thing: Dad is happy. He may be frustrated by his symptoms and limitations but, even on a bad day, he is rarely without a smile and never without a hug for all of his visitors…and at the end of the evening he still remembers to ask for “one ringy dingy” on the phone to let him know we have made it home safely.

When I start to lose hope, something always happens to snap me back. Most recently it was a text from Paula:
“I got Dad to shave today (not a very good job, but I told him he looked so handsome.) Dad and I walked around the backyard. We talked about raising kids and discipline. He told me the most effective child raising is done with praise vs disappointment,  :).”

He’s still teaching us.  Dad is still in there somewhere, being a father and guiding his children as best he can…still setting a good example.

To be continued….

It goes without saying…

The holidays have come and gone and with their end we have all come to the conclusion that Dad has lost a lot of ground physically over the season.

About a week before Christmas I was visiting Dad; it was just a day after the successful shower night ending with him sleeping with his feet up in his own bed. I began the visit as usual, greeting Buddy, preparing dinner, promising desert after a walk. We finished dinner and went outside. Mike had observed the night before that Dad seemed pretty weak and unsteady on his feet. Although Mike was not with me this particular evening and I agreed with his assessment, I decided to attempt the walk anyway. We began to descend the back porch. Dad took one step down, lost his balance and fell on his back. Although he didn’t fall hard nor did he hit his head, I could tell the fall had hurt. I knelt beside him, put my hand on his chest and said, “Dad! Are you okay? Do I need to call anyone?” terrified I would have to call 911.

“No. I’m okay. Just give me a minute.”  This was a difficult and some what scarey situation. With my back problems I couldn’t support Dad to help him up. The situation called for improvisation. I looked around and saw a large bucket. I turned it upside down and said, “Dad, use this bucket for leverage to help you sit up”. He did as I told him and gradually we got him back on his feet. Later when I was putting in his eye drops, I noticed blood in his eye under his lower lid and worried it was from the fall. I remembered Hillary saying that she would be taking him to the eye doctor that day and sent her a message asking if she knew about the blood in his eye. She confirmed he had an injection to his eye earlier that day that caused the bleed, not the fall. I related the story to Paula and Mike as well. Mike suggested that we add a rail to the back porch to prevent such occurrences.  Paula and Hillary agreed.  I knew not only was the walk out of the question but that I should no longer attempt it unless Mike was there to help.

I have not written in a while because I have been sick since Christmas day and have only had a reasonable amount of energy for about two days.  Mike has been my right arm for the past two weeks, coming to my aid for Dad shifts at a moment’s notice. I don’t know if I would have been able to handle last Thursday without him.  

Still recovering from my illness, as I was driving to Dad’s house I began to psych myself up, preparing myself for “Pie for Shower” night.  In my head I went through my routine, sounding a little like an auctioneer, “I have here a BEAUTIFUL Dutch apple pie! This here pie is fresh out of the oven just the way mom used to make. Let’s start the bidding at ONE SHOWER! Do I hear one shower, I have a bid for one shower! Do I here another bid?? Going ONCE…Going TWICE…SOLD to the man with the oily hair for ONE SHOWER!!” That was how it went in my head…and God laughed.

As soon as I walked through the carport entry I knew the evening would be very different from my plans. It was the second time I had walked through that very door and been hit in the face with a foul odor. I peeked into the side bathroom and, just as I feared, saw that Dad was suffering from severe diarrhea. His jeans, belt and briefs were on the floor, all coated with feces. It was apparent that Dad had tried to clean up the mess around the toilet but had been unsuccessful.  I followed the trail back to his bedroom and into his bathroom where dad was standing in a flannel shirt, under shirt and socks with a pair of clean briefs in hand (I was grateful for his slumped posture). He was very weak and shaking. Poor guy.
“Dad, let me help you”, I began, gently taking the briefs out of his hand. “You are obviously having some bowel problems”.
“You think??” he laughed helplessly.
“Dad, you can’t put these briefs on. You need to really clean off. It’s running down the back of your leg. How about we get you in the shower right now?” I urged.
“Okay”, he said, “Just let me sit and rest for a minute”, as he shuffled into the bedroom.
“NOOO!” I thought panicking, “Don’t sit on the…” plop “…bed”.  He sat there on the edge of the bed as, in my mind, I added another hour for laundry to my visit.
I went into the bathroom, started the shower and prepped the area for him. When I came back to the bed and helped him up there was a large  smear underneath him. This was going to be a very long night. Dad lacked the energy to order me out as I insisted on taking his soiled clothing before leaving the bathroom. Poor Dad was so weak. “Don’t worry, Dad. Your shower chair is in there. You rest there as long as you need to. I will go put the pie in the oven”. 

First order of business was to bring in reinforcements. I called Mike and explained the situation. He came over right away. His job was to keep Dad distracted while I handled clean up. I stripped the bed while dinner was cooking. When Dad came out of the shower, I started the first load of laundry. After he emerged from the bedroom we ate dinner and then Mike got him to his recliner to watch Jurassic Park. I went back to the laundry room and used the utility sink to clean Dad’s belt. As I was spraying it off I lost my grip on the spray nozzle and shot myself the chest. It was quite a hook shot because somehow it curved around inside my shirt and soaked my lower back. Mike heard me laughing from the other room. At this point the absurdity of the situation was starting to amuse me. 

Although I have found on other shower nights that his briefs were unusually soiled, I had been unaware he had a frequent diarrhea problem. After sending a text to Paula about what was happening she related that she, too, had fished some diarrhea soiled jeans and briefs out of a hidden laundry bin. It was oddly comforting to know I wasn’t the only one in the family who had to deal with this. 

Next, I went back to the bedroom to see what other surprises awaited me. On his bed I found a soiled towel and sheets that needed changing. I picked up the towel only to realize a second too late that I was clutching the most soiled part. Ugh! Okay, par for the course, I started another load.
After washing my hands I came out and joined Mike and Dad, and slumped in a chair. They were at the part of the movie when Laura Dern puts her whole arm in a giant pile of dinosaur droppings. The irony made me laugh. “Honey, I feel your pain”, I thought, “I had my hand in dinosaur poop tonight, too”. 

Pie came out of the oven as usual. Dad certainly deserved his pie tonight. What a tough day!
Mike joined me in the kitchen to help clean up. I looked at him, exhausted, and said, “What a night. You know, what amazes me is that some people actually choose to do this for a living”.
Mike’s response was insightful. “You know, it goes without saying that we all honor our firefighters, police and military personnel. You see posts about them on Facebook every day…but, as hard as this night is, there are people who do this every day for strangers. Where are their honors?” Very profound. We do it for Dad because we love him, but there are people who have made it their life’s work  to go into the trenches of hospice, dementia and elderly care. What kind of person makes that kind of commitment to humanity? What must that person be made of to care for total strangers in such an intimate way?

These are the unsung heros of our society. They don’t look for praise or laurels for their devotion to others. These amazing people do it by choice, knowing that they will not be widly recognized for their efforts. If you ask one of these professional caregivers I am sure their reasons for choosing a life of service would be different but ultimately their feelings about their job would be similar: that it is fulfilling to know that they are making a difference. 

It goes without saying that these are rare individuals. I wish there was a special day to honor these human angels of mercy that walk among us, unseen, unrecognized. There should be a day of respect just for them. 

To be continued….

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 through 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 suspect…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. Carrie 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.