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...

Skydiving: the Sine Wave of Alzheimer's

This weekend my Dad went skydiving. Surprised? Me, too! I walked into his house Saturday evening to find him sitting up in his chair eager to share his day with me. Unsuspecting, I entered the room with my usual greeting, "Hi, Dad!", hug, kiss, "Are you hungry? Tonight is pasta and The Godfather! The pasta goes with the movie."

Dad laughed, "Wow! Great! Well this has been quite a day! Did you know I went skydiving today?"

At first I thought he was pulling my leg. "You did?" I asked skeptically.

"You don't believe me, do you?" he asked, smiling. "Tom went with me. I thought he would be afraid to jump but we both jumped at the same time."

"Oh, that wouldn't surprise me at all", I responded, "Tom is an aerobatic pilot. You're sure it was Tom that went with you?" (It was Bradley's day to visit, not Tom's.)
"Absolutely! We did it together", he said confidently.
I started hurriedly texting all of my siblings, my daughter, my nephew and his wife. Could anyone confirm that Dad had gone skydiving today, and if so...what were they thinking?? Whatever he was remembering, he was as sure of it as he was his own name.
As he regaled me with his exciting story the responses started flowing:
Tom - "Nope...glad he had a good time, though."
Bradley - "No, I had lunch with him and we talked about airplanes. No skydiving."
Kelly - "Whoa..."
Paula - "Lol! Good for him! What did Tom say?"
Hillary - "Weird."
Toni (Bradley's wife) - "I don't think so, Bradley had the lunch shift today and didn't mention going skydiving."
While the messages poured in, I was asking questions:
"Are you sure it was Tom?"
"Where did you jump? Was it the same place he took Ann for her birthday?"
"Did you jump individually or tandem?" (A tandem jump would at least have been plausible. Dad insisted it was not tandem.)
Dad happily answered every question although some details were a little fuzzy.
He ended his story saying, "As I was floating down I remember thinking, 'This is crazy! I'm seventy-five years old and I'm skydiving!'"
I smiled and said, "Actually it's even better than that...you're seventy-eight!"
"I'm seventy-eight??" he asked, genuinely surprised and a little disappointed. "Why did you have to remind me?"
"Are you kidding?" I asked, "That's awesome! How many guys have you known that went skydiving at seventy-eight? That's the best part!"
He smiled and we continued the visit.
We caregivers concluded that it had been a very vivid dream...so vivid he must have thought it was real because it stayed in his mind for so long. He was so excited, there was no reason to burst his bubble and tell him it wasn't real. To his knowledge he had had a wonderful and exciting day. He must have felt more alive and like himself then he had in quite a while.
We all continued to message each other. Paula said Dad had once told her that dreams of flying indicate a positive, optimistic outlook. I think we all could agree, a skydiving dream was close to a flying dream and was a very good sign of his overall morale.

One might think of that evening as a sign of his condition worsening. On the contrary, the weekend that followed was a wonderful weekend for Dad. He was more engaged in conversation then he had been in a long time. He remembered the names of all his siblings, half of Mom's siblings (recall that she had a very large family...remembering half was quite a feat), where he went to school and other things. Even more surprising was that we had a gathering to celebrate Tom's birthday on Sunday and when Hillary asked him on Monday, he not only remembered that there was a gathering but also the occasion we celebrated!

I have no explanation for this turn around in his condition but I know that Dad's condition has ups and downs. For the past month he has seemed to be on a fast downward spiral. It seemed that the future was looking very grim, indeed. Now, your guess is as good as mine. Certainly, however long we have with him, it is much better if he can enjoy it and not feel like he was fighting a losing battle.

Personally, I hope he has more dreams like the skydiving dream. They appear to be good for him. I have to wonder  if the improvement in his memory might have been a result of the joy he felt thinking he had done something brave and exhilarating....something very much in keeping with his old self. It seems a little happiness can go a long way toward healing or, at the very least, slowing his illness. I'm glad he got to go sky diving!

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 scary 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 hear 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....