Fall risk (part 2)

Following that night I spent with Dad after my first unsuccessful shower weekend another week went by. That Friday I came to dad's house and he, again, was very weak...too weak to shower. Again, I spent the night. Mike stayed with me. Early that morning Mike went home to feed our dogs. I stayed and made breakfast for myself, Allison and Dad. I made eggs, cinnamon toast and sliced strawberries. Dad enjoyed the homemade breakfast while I observed. He was having trouble locating his mouth with his fork. It crossed my mind that he was still just tired but I messaged Paula letting her know what I was seeing. We agreed to keep a close eye on him for the next couple days. After breakfast, Allison and I hugged Dad and promised to come back that night. 

We returned, as usual, at six o'clock, Saturday. Dad was standing when Mike and I entered and it was apparent that he had lost control of his bladder. We would have to insist on a shower no matter how difficult it would be. Dad fought us as best he could, arguing, promising to shower later, getting angry and demanding that we leave. We finally caught him off guard and got him to sit down in the rolling walker. Tipping it backward we rolled him into the bedroom. He continued to protest, even going so far as grabbing the door frame. It was at that point I decided, "This is getting unsafe. After tonight I will need to say something to Paula. We have to get help with hygiene." Dad finally gave in and showered. It took a while but he definitely felt better when he was clean. We followed up with dinner and a movie as usual. It would be the last "normal" evening for a while...possibly ever. I had a gut feeling that we were about to be hit with another big wave of change. The next day would prove me right. 

Our family always celebrates birthdays on Sunday. Since my niece, Tom's daughter, turned sixteen in October, it was time for a party. Text messages flew back and forth through out the day. "What does Casey need/want?"  "Is Ann making the cake?" "I can't make it to the store, can you pick up _____?"

I had made it home at three o'clock after choosing gifts to bring and getting fruit to make a fruit salad. We began putting together our packages when I noticed I had missed a series of texts from Paula and responses from Bradley. 
Paula: Dad fell in the bathroom. I have been trying to help him and am drenched with sweat. Need help.
Bradley: I am an hour away. I'm sorry. Wish I could help. Call Dad?
Paula: He's at work. I guess I will call 911. 
Bradley: On my way back. Did you call?
Paula: Called. On way to emergency room. 

We knew which hospital so I responded: Just saw this. Meet you there. 

I quickly told Mike what was happening and we jumped in my car and raced to the ER.

As we walked through the sliding doors, Paula exited the automatic doors of the patient rooms. She walked straight to us. 

"Dad isn't able to talk other then the occasional whisper and he isn't making much sense. I haven't been able to reach Hillary yet", she informed us. 

"Okay, should I come back with you?" I asked. Bradley entered the ER just as I said this. 

"You can. They will only let two of us in at a time."

I gave Mike a quick hug and kiss and followed Paula, glad that Mike had Bradley to wait with him.

Dad was in the room immediately after the automatic doors. They had really just arrived. We helped keep him calm as his IV was administered. He was also given an automatic blood pressure cuff. During that first hour he said a total of three words. When Dad's blood pressure cuff squeezed his arm uncomfortably he belted out a breathy "JESUS CHRIST!"  A little while later when a tech came to take him for a CT scan I told him I would go with him and he managed an "Okay". That was pretty much all I heard from him that first night. 

I stood in the doorway as he was positioned for his CT scan by two talkative techs. He was very agitated and kept moving and making noises trying to voice his confusion. I continuously called out, "It's okay, Dad. Stay still. They aren't going to hurt you."  Then they closed the doors and I listened. I could hear the techs chatting and laughing as they did their job. Could they not see how confused and frightened Dad must be? I sat in the hallway, helpless as I waited for them to finish their scan. A woman in a wheelchair was in the hall with me. She was next for a scan. The waiting was awkward. Should I talk to her? Ask her how she was? Mind my own damn business? She broke the silence. 

"Your Dad doesn't like hospitals much, does he?" she asked with a knowing smile. 

"No, ma'am...no he doesn't. Ironically, he's a doctor", I replied. 

"They're the worse patients", she smiled. 

"They certainly are", I nodded, smiling back.

The doors opened and the techs wheeled Dad out and back to his room. He held my hand tightly as we made our way back. He was frightened and disoriented.That first night was a series of tests, scans, blood draws, poking, prodding and, above all, no clear answers. 

Over the next several days it appeared Dad had a break with reality. The few intelligible words that he spoke indicated that he thought he lived with his parents in Ohio. Other interesting things he said were that he had three sons, five daughters, five cats and five dogs. Dad usually knew Paula and Hillary and for some reason also knew Mike by name. He was still comfortable with me but not sure who I was. After an ultrasound it was determined that he had had a TIA (Transient Ischemic Attack) or mini-stroke. Whatever had brought it on, it appeared to have accelerated his dementia. The second night he was there he ripped out his IV three times and continuously pulled off his leads. Because of the swelling in his legs, relocating the IV to a nonstandard entry was not an option. Hillary texted me and Paula, so frustrated and out of ideas to control him. We had no helpful suggestions. 

From time to time Dad would become aggressive with the staff, demanding to leave, lashing out verbally and physically at the nurses trying to help him with toileting, changing, sitting or standing. We did our best to calm him but even we, his family, were not entirely safe. Each of us had to deal with his combative temperament. Once he managed to hit Paula in the face. He wrestled with me and Hillary. I remember after three days marveling as two tiny nurses came in to help with toileting and thinking, "Really? You couldn't find ANYONE bigger than me?" (Recall, I'm 4'11". Yes, they were that small!)  The few times that he would remain calm we would try to explain to him that he had had a stroke. This explanation never stuck for more than a few minutes and eventually he would demand to know what was going on and try to get up to leave. Ultimately, we had no choice but to allow the nurses to sedate him for the safety of everyone including Dad.

Hillary covered many of the day shifts while Paula and I covered afternoons and evenings. The stroke ward was understaffed and it was important that we tag team it until either Dad remained cooperative or the staff was able to cope with his bouts of frustration.  Doctors took me and my sisters aside individually and counseled each of us that it was no longer safe for Dad to live alone. Clearly arrangements would have to be made. By day five, the neurologist decided Dad should be released to a rehab facility for seven to ten days. I took the afternoon off to relieve Hillary and she went home, half delirious with exhaustion, to sleep it off. I stayed and awaited transfer orders. Around three o'clock we were told a transport to the rehab facility had been arranged and Dad could get dressed. Bradley stopped by with shoes for Dad and helped me dress him for transport. Still unable to stand for more than a few seconds Dad wanted to leave immediately once he was dressed. Bradley and I helped him to sit in a recliner in his room for the remainder of the time as we awaited his ride. It was clear he still was not in reality. He was sure that on the other side of the bathroom was a living room and wanted to go lay down on the couch. Dad also was convinced his house was only two blocks away rather than across town, and that he could easily walk there on his own. 

Finally the nurse came in to tell us the transport was there and asked if he was ready. We would have preferred she had worded that differently. Of course he was ready. 
"Okay, let's go!"  Dad said, trying to stand. 
"No, Dad, they're going to come up and get you", I said trying to keep him in his chair. 
"Why? I'm just going home", he said.
"No, Grampa", Bradley explained, "They are taking you to get physical therapy."
"But I can walk just fine", Dad insisted angrily.
"Dad, you can barely stand", I said firmly, still trying to restrain him as he attempted to push us out of the way. 
"Grampa, everyone leaves on wheels", Bradley said, "Even you."
Dad calmed down. 
I knew the transport people were a few minutes late so I went out into the hall to see if they were on their way, There they were. Instead of a couple orderlies with a wheel chair, two huge guys were rolling an ambulance gurney down the hall. I went back into the room and quickly whispered to Bradley what was coming. 
"This is going to be bad", he said with a look of fear. 
"I think we should get out in the hall and let the transport team do their job", I suggested. Bradley agreed and we cleared out, waited and listened.
From inside the room we heard a few profanities from Dad followed by a loud, "Why do I have to go on there?" 
"Sorry, sir. That's just what the orders say", one of the orderlies replied. A few seconds later they wheeled him out. Dad didn't see us in the hall. I grabbed his things and Bradley helped me to my car. 
"Wow", he said in the elevator, "I'm surprised that went so calmly and quickly!"
"Really?" I smiled, "I'm more surprised the nurses weren't cheering and calling out 'Bon Voyage'!"
We both giggled. A rare moment of humor before the next storm.

To be continued....

Tom's Crash Course in Shower 101

Up until now I have been the only one who has consistently been able to get Dad to take a shower on a weekly basis. I know all his tricks and have committed to one shower a week but sometimes it's still a struggle. He is still gleefully defiant when I tell him he needs to take a shower, smiling and saying "NO!!" to my face, thinking he can get me to back down.
A couple of weeks ago Hillary was still there when I arrived for my shower night visit. There have been problems with the toilet in one of the bathrooms backing up and, with it being a bathroom Dad tends to use frequently, it needed to be dealt with right away. Dad was standing in the door of the bathroom talking to Hillary as I walked in.
"Oh good! You're already up", I said. "Guess what day it is! Shower day!"
"I'll do it later", he replied.
"No you won't", I said, "You'll take one now".
We both made our way from the door through the kitchen and started to cross the living room when I realized he was making a B-line for his recliner. I jumped in front of him and spun his chair around backward to cut him off from his goal.
"Dad, you're not sitting down now, you're taking a shower"
"NO!" he said with a smile, daring me to contradict him.
"Yes, Dad, you are taking a shower", I insisted.
"NO!"  he said with a smile of delighted resistance.
I knew this argument could continue indefinitely if I didn't change my approach.
"Dad, you have to take a shower", I said lowering my voice and holding him by the shoulders. "You haven't showered in a week."
"I beg your pardon, yes, I have!" he replied, clearly insulted.
"No, you have not", I shot back, "Do you know how I know?" I poked him in the chest with one finger, "I picked out that shirt and that t-shirt for you last week."
He finally gave in.  I have noticed that he is particularly resistant when other people are around. That is why I prefer to have Mike and the kids hide if they accompany me on shower night.

Dad is having a harder and harder time getting around. On shower nights I usually will observe any cuts, scratches or edema in is legs, feet and ankles and if anything looks worrisome I will take pictures and send them to my siblings. His ankles and feet have been swelling a lot lately and since I am the only one up until now who sees him mostly undressed on a weekly basis, I am most likely to notice a problem and alert the others.

That said, Dad has been picking at the same series of scabs on his shin for months now and they are not going away. Actually, they appear to be getting worse. On the last two shower nights I have noticed, aside from the usual edema, purple feet and worsening scratches on his legs he also had large white patches on the soles of his feet. I sent pictures to my siblings and asked their opinions. We unanimously agreed that we needed to step up his hygiene quite a bit. I suggested that each of us commit to one shower a week effective immediately. Everyone agreed and my brother, Tom, committed to Monday nights specifically.
I knew that he would need a lot of information to be successful so Monday morning I sent him several long texts with instructions and additional tips to increase his odds of success:

• Make sure he is standing and away from his chair before announcing it's shower night.
• Have his "uniform" on the bed before he undresses so he knows you know what he needs. The uniform includes clean briefs, undershirt, socks, hanky, overshirt and jeans.
• Check the pockets of his dirty clothes for wallet, pens, hankies, glasses and toothpicks.
• Have the small standing towel rack positioned by the shower with two large towels. 
• Put a hand towel on the floor of the shower to prevent slipping. 
• Make sure soap-on-a-rope, wash cloth and scrub brush are sitting on his shower chair and shampoo is beside it.
• Pre-warm the water for him once he has undressed.
• Don't leave him to do his thing until he has given you everything but his briefs (he may keep his briefs and his dignity but everything else is going in the wash). Put them in the washer but do not start the wash until he finishes showering.
• Leave the room for a moment when he is walking in to the bathroom but come back after a few seconds and check that he is really getting in. He has tried to fake us out before by just wetting his hair.
• Once he is in, check on him every so often to make sure he is really washing. 
• After he is out, you can start in the washer. 
• Wash briefs and towels separately with plenty of bleach.  (Truthfully, I did not expect Tom to do the wash at all. I figured his hands would be too full just trying to get Dad to cooperate.)

 I sent these instructions over a series of several texts and was concerned that I was annoying Tom because his answers were so short: "okay" and "thanks". To my surprise my cell phone rang early that evening. It was Tom.
"Are you stuck?" I asked, thinking Dad had already managed to stonewall him. 
"No, I'm goin' in!" he said jokingly like a man entering a warzone. "Any last things I should know?"
Pleasantly surprised I said, "Take the dirties out of the room as soon as they are off. If you don't, he might try to put them back on when leave the room."
"Okay. Where should his uniform be?"
"On the bed so he can see it but far enough away that he can't reach it", I instructed. 
"Okay, good", he said. 
I was glad to hear him so enthusiastic and wondered if Dad would give him a hard time or if it would be easier for Tom, being a guy.  I waited for word...and it wasn't long before I got a text.
"He's in the shower!" it read. 
"Wow! That's great, Tom!" I responded, genuinely impressed. His response was priceless.
"I feel like I just negotiated a major peace treaty! Thank you times a thousand!!"
"It does feel good, doesn't it? :)", I responded. 
"How about the clothes?", he asked, "What should I do with them?"
"Throw them in the shower with him!" I joked.
"Lol!"
"Just wash the briefs and towels separately from the rest", I said, impressed that he would take on the laundry as well. "Thanks for following through!"
"Thank you! Love you, li'l sis."
"Love you, too, bro!"

To be continued.... 

Short sabbatical...

Just a post to let my readers know I have been on a short involuntary sabbatical...I have had no internet for the past three weeks. The problem was resolved yesterday (I switched providers) and the blog will resume in the next few days.
Have a great day!
~Erin

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...

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!!

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...

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... 



 

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