Half...(part two)

Q: How do you tell an  Alzheimer's patient his only son has died?
A:  Again...and again...and again...and again...until after the funeral. After that you never mention it again ever, ever, ever.

The morning after the crash I was up early. I had not quite wrapped my mind around what had happened. Tom was gone...I hadn't dreamed it. I sent a text to Paula asking what time she was going to Dad's so we could be together to tell him. She had spent most of the evening before with Ann and Casey. Given Ann's illness it would be best not to leave her alone for very long. She would need a lot of support to get through this terrible turn of events.  Fortunately her brothers had arrived to relieve Paula and spend the night with her. Tom's life and exuberance had given life to that house. It must feel so empty without him. Paula said if we didn't hear from Hillary by 9:00 AM we should probably head over to Dad's. I agreed.

I dressed as if it were any other Sunday visit, Jeans and a t-shirt. I wondered how Dad would handle the news. Dad has always been so stoic. I had never actually seen him cry...not when Mom died or when Jenny died. How would he take Tom's death and would the Alzheimer's end up compounding his grief or actually relieving it? My fear for him was that it could trigger a downward spiral. Time would tell.

I kissed Mike goodbye and told him where I was going.

"Do you need me to go with you?" he offered.

"No, you stay here and look after the girls", I said after some consideration. "I may call you and ask you to come over later."

"Okay, Just let me know", he said hugging me tightly, "Narboza".
"Narboza", I replied and left.

I got there and Paula was already there. We hugged each other and quietly discussed how we should approach Dad. Should we all be there or have one of us tell him privately and then the others could come in for support? We agreed all of us should be with him when we broke the news.

We went in and greeted Dad with hugs and kisses. He was happy to see us both. I put on a movie to distract him while we busied ourselves with cleaning. Dad would probably have visitors all week and perhaps even overnight guests from out of town, best to get the house in order. Soon we were joined by Bradley, his wife and daughter.

An hour went by and Hillary had not yet left her house. Still overwhelmed, she was not up to coming over. It would fall on me and Paula to tell Dad. We both sat down on chairs in front of him.

"Dad, something has happened that we need to tell you about." Paula began, "Tom was flying his plane yesterday....." she paused, "There was an accident....his plane crashed...and Tom died in the crash." As she said this I reached over and held his arm gently.

I could see the comprehension slowly drain his face. "Wait", he said, not sure if he heard correctly, "Say that again, who died?"

"Tom. He crashed his plane."  Dad appeared to deflate in front of us.

"This is my fault", he said regretfully.

"NO, it wasn't your fault at all, Dad!" I said, "Tom was a sportsman, he was an experienced pilot and nothing could have kept him from flying".

"It's my fault", he muttered again. "Do they know what went wrong?"

"No, Dad, it's under investigation. Not sure if it was a mechanical failure or if something else went wrong. He was a good pilot...kind of doubting it was pilot error", Paula explained, "They won't release the body until tomorrow."

"Was there a fire", Dad asked.

"No fire. He just pancaked the plane", she said, "I'm so sorry, Dad."

"I just want to be alone", he told us.

He looked completely desolate. It was his "block out the world" look that I had seen a handful of times in my life. Dad looked so much older in that moment.

"Dad, we're going to be here all day", I told him, "We have to get the house ready".

Paula and I both hugged him and got up. We went to the kitchen. "Why don't I make him some lunch and see if he'll eat?" I asked her.

"That sounds like a good idea. I'm going to call and see if someone is still with Ann and Casey. We also need to go through photo albums for a memorial slideshow", she added.

I made dad a sandwich and a plate of sliced fruit and brought it to him. He didn't see terribly interested. Then Mike and Allison arrived and Dad brightened up.

"Hey! How's it going?" Dad asked.

"We're fine...you doing okay?" Mike asked.

"I'm wonderful!" Dad said smiling. He was not being sarcastic. His smile betrayed what had happened. Alzheimer's had wiped away the past hour already.

After chatting with Mike a bit and asking who Allison was, where she went to school, etc., they joined the rest preparing the house.  Dad called me over and asked, "Why is everyone here?" thinking, I imagine, that it must be a party.

I called Paula over and we explained about the crash again.

"Why didn't anyone tell me?" Dad asked angrily.

"We did tell you", Paula said, "but for some reason the Alzheimer's isn't allowing your brain to file it properly".

It was news that would be broken to him over and over with the same questions, the same guilt, the same dejection.  This was going to be a very long week. We would not be able to keep from talking about it around him until after the funeral.

Shortly after that second revelation everyone left to run errands: Mike went to the hardware store for a gardening tool, Bradley went to gather more pictures from his home, Paula went the the grocery store for sandwiches and food to feed the army of family that would be in and out for the next few days. I stayed with Dad.

After about a half hour the phone rang. Likely we would start getting calls now that all immediate family had been informed and Tom's name was finally released to the public.

I answered the phone. It was my Uncle Henry. He was the oldest of Dad's three younger brothers. 

"Hi, who am I speaking to?" he began.

"I am Erin, who is this?" I asked.

"It's Uncle Henry, your Dad's brother", he responded. I thought it was funny at the time that he felt the need to clarify but we hadn't seen him since Mom died so I guess that wasn't inappropriate to say. 

"Erin...how are you and everyone? We just heard", he said sympathetically. 

"It really hasn't sunk in yet", I answered as honestly as I could. 

We chatted for a minute or two and then he asked, "How's your father? Can I speak to him?"

"Dad is fine but the Alzheimer's is making it difficult for him to process. I think this last time stuck though...hold on." I set the phone down (it's one of the few phones left in the world that isn't cordless) and went to get Dad from the other room.

Dad looked up from his chair and asked, "Who is that?"

"It's your brother Henry. He just heard about Tom's plane crash. You're probably going to get a lot of these condolence calls. Do you want to talk?"

"Yeah, I guess so", he said. He didn't question what I was talking about so perhaps our last retelling managed to sink in after all. 

I walked back to the phone and Dad shuffled a few feet behind me. 

I picked up the phone again, "Uncle Henry? Here's Dad..." and handed it to Dad.

"Hello?.....Who?....Oh, Henry, hi!" Dad didn't look at all sure who Henry was but he continued, "I'm fine....What? Wait, say that again....who was in a crash?" and looking at me in shock and anger asked, "Do you have any idea what he's talking about?" holding the phone out to me.

Suddenly I realized in horror that from the chair to the phone Dad had again forgotten what had happened and thought that he was hearing all of this for the first time from Uncle Henry. I took the phone and quickly said, "Uncle Henry, I'm so sorry to do this but we need to get off the phone now. I'll have Paula call you later. Thanks so much for calling!" and hung up on my poor, bewildered uncle.  You see, none of Dad's brothers had seen him since Mom's death ten years ago. They had no idea the day to day reality of Dad's condition.

Dad slumped in the chair by the phone and again demanded to know what had happened. Again, I explained as gently as possible about the crash. Again, "Why didn't you tell me?" and, again, my explanation of what his illness was not doing with the information. It was like the most agonizing loop ever.

Eventually everyone came back and I related to Paula what had happened. By then Hillary had joined us. So much work to do. Paula received a call from one of Ann's brothers. Ann and Casey were alone at their house. Paula was going to go over, but she had so many other things to do I offered to go instead and try to get Ann and Casey to join us for dinner. 

As I drove I wondered what I would find. Would Ann be calm or distraught? Knowing Casey and how close she and Tom were I could not even imagine her pain at losing her dad to the pastime he loved most. 

As I pulled up to the house I noticed news van pull up behind me. I hung back to see what would happen.  A  tall, well dressed young woman got out and began walking to Tom's front door.  "Wow! That's bold!" I thought and quickly caught up to her. 

"Excuse me! Can I help you? " I called after her.

She turned around,  surprised. "Oh, we were just hoping to talk to the family.  Do you know them?"

"I am the family.  I doubt they are ready for interviews", I stated.

"Well, we saw some of the posts made on Facebook,  how respected he was. We were hoping to do a story on how he loved flying", she pushed. 

"Here's the story:  he loved flying", I replied tensely. 

"Well, we don't have any pictures other than the one ran previously", she pressed,  "Do you think you could persuade anyone to give us a more personal picture, maybe with his family? "

I thought about it for a moment...If they had access to the posts on Facebook then they should have plenty of pictures.  They were just trying to get in. 

"I will make a deal with you", I bargained.   I will go in and speak to the widow.  If she says no then you will respect her wishes and leave. Fair enough?"

"Okay,  we can do that", she agreed.

I motioned her to step away from the porch and with my hand on the doorknob to control how much it opened I rang the bell.  The faint sounds of movement  drifted through the door.  Casey answered. 
I pushed in quickly through the small opening and shut the door behind me. 

"There is a reporter outside who planned on walking right up and knocking. Where's your mom?" I asked. 

"Oh my God!" Casey said covering her mouth in disbelief.  "She's on the couch. "

 We strode into the living room. "Are you up for an invasion of privacy? " I  asked wryly.  "There is a reporter outside requesting an interview. She said they would leave if you declined. " 

"Whoa, that took a lot of nerve!" Ann exclaimed,  "No, I don't think so.  Geez, I can't believe they thought they could just come right over unannounced! "

"That's what I thought you would say", I agreed, "I'll go take care of it." 

I went out through the narrowly opened door.  

"His wife respectfully requests that you leave them alone", I said politely...then closed the door. I watched through the curtain as the disappointed reporter made her way back to the van. It was a lucky coincidence that I arrived when I did. Ann and Casey didn't need that. None of us did, but especially not them.

To be continued...

Half....(part one)

Tom  was gone...in an instant...now I have two living sisters and half my Dad. In just over ten years I have lost half my birth family:  the two youngest of my four older siblings, my mother, and slowly, painfully, my father. It has been two months since that terrible accident that took our Tom so I will do my best to recall for my readers the weeks that followed,  how our roles have changed, how our views of care giving have morphed,  and how our sense of responsibility has become more acute.

We continued our drive to the airport to pick up Kelly. No one said a word for several minutes. Mike held my left hand and Allison held my right. I broke the silence. "How will we ever tell Kelly? She is expecting a happy home coming. This is not okay."

"Let's get her bags and act normal", Mike suggested, "We'll find somewhere to sit and then we will tell her".

More deafening silence followed for several minutes. I wondered why I couldn't cry. My only brother was dead! What was wrong with me?

We arrived at the airport and waited for her at the international arrival gate. It seemed like forever. There was a food court right next to the gate  so we found a table, sat and watched as one by one the passengers exited. Finally, we saw Kelly, tan and smiling, rolling out. She waved and made her way toward us. Kelly saw my eyes tearing up and exclaimed, "Aaw, Mom!" and hugged me. Truthfully, I think they really were tears of happiness to see her safely home.

"Sweetie", I began, "We have something to tell you...." and explained what had happened.

"Why didn't anyone tell me before?" Kelly asked, still stunned.

"It just happened. You were already in the air when his plane crashed", I explained, "We were on our way here when we found out". It was a heavy thing to come home to. So unfair. We rolled off to the car and headed home.

While Mike drove I began messaging Paula. Did Hillary know yet? Paula said she was still trying to reach her. Hillary's cell phone was going straight to voicemail. The message box on her home phone was full.  No one had her boyfriend's phone number. Paula racked her brain to remember his full name.

Next I called Sara. We talked for over an hour. Sara asked if I needed her to come. She and her family lived in Colorado and had just moved into a new home a day earlier. I knew she was exhausted. On top of that, apparently I was not that upset. I had known for hours and no tears, no lashing out, nothing.

"Nah, it's okay. I know you have a lot going on. It's sweet of you to offer but I'll be okay", I reassured her.

"Okay, well if you need me, you know I'll drop everything and hop in the car", she replied. I knew she meant it.

Then I called Ann.
"Oh, Erin, I'm so sorry. Are you okay?" she asked. I couldn't believe she was thinking of other people's pain at a time like this. It was her husband that was killed. What a rare and good person.

"I'm fine, honey. How are you and Casey?" I asked.

"I don't know what we're going to do. Tom was my rock. He was Casey's best friend. I can't imagine life without him", she lamented. There really was no comfort I could offer her other than a sympathetic ear and reassurance that we would all help her through this.

After we hung up my phone rang again. It was Candace, my walking buddy and the mother of Allison's best friend, Heather.  Candace was crying uncontrollably.

"Heather just told me what happened! That's so horrible! I'm so sorry!" she sobbed.

Now I was getting unnerved. Candace had never met my brother but she was taking this much harder than me.

"It's okay, really! I'm fine!" I told her.
"Aren't you upset?" she asked, surprised at how composed I seemed.
"Well, yeah, I'm upset", I responded (God, I hope I'm upset! What the hell is wrong with me?) "I just don't grieve like that. Actually, I'm kind of surprised myself by how level I am right now."

I finished talking to Candace and called Paula. "Have you been able to reach Hillary yet?" I asked.

"No, I have left a few messages. I hope we can reach her tonight. I don't want her to find out on the news", she said.

"Oh, God, I hadn't even thought about that!" I replied, "Even broken, his plane is pretty easy to recognize. If they show the plane and she sees it, she will freak."

"Do you think we should go over and tell Dad tonight?" she asked.

"Only if we find Hillary. I think the three of us should tell him together", I said after some thought. "I really don't see any point in telling him tonight. If he doesn't retain it we will have to do it all over again tomorrow. Better to do it when he doesn't have to be alone."  She agreed, so that was the plan.

I only had one more thing I wanted to do before calling it a night. I kept asking Mike the time trying to determine whether his parents in Europe would be awake. Mike's parents are wonderfully supportive. They have been like parents to me as well. I wanted to reach them as soon as possible to assure them that Kelly made it home safely and to tell them what had happened. We definitely didn't want them hearing from a third party. After all, they had know Tom since he was twelve. Better to hear it from us. Starting at 11:00 PM I began trying to Skype them. I must have tried ten times. No answer. Mike kept asking me why it was so important to me to reach them that night. I wasn't sure, I just knew I really wanted to talk to them. It didn't matter anyway. They weren't answering.  It would have to wait until tomorrow.

I went to bed. Sometime around 2:00 AM Paula finally was able to reach Hillary to break the news. Hillary was inconsolable. (Seriously...what was wrong with me???)

To be continued...

Time for a summit meeting (part 1)

Having a family full of stubborn people, myself included, makes it particularly difficult to draw the line where family care transitions to professional care. My personal belief is that when the patient exhibits behavior or concerns that threaten the patient's health or survival, it is time to discuss easing into, at the very least, a daycare or assisted living solution. Such indications appeared to be surfacing recently. Dad's ability to communicate effectively is becoming more compromised as weeks pass. He is sitting in his chair far too long and, as a result, losing muscle tone and causing a noticeable amount of edema (swelling/fluid retention due to lack of circulation) in his ankles and feet. These are all bad signs but the worst indication happened two month ago.

Hillary had sent out several texts regarding one of the gates to Dad's backyard being left open. She speculated that either the gardener had been leaving it open or possibly an intruder was getting into the backyard. Either possibility was unacceptable and the gate needed a lock immediately.  Tom offered to acquire one and handle installation.

Being very stressed about Allison's school work, Kelly's graduation schedule and other pressing matters, I have been trying to bring Mike along with me when caring for Dad to help alleviate some of the stress. My Thursday and Friday visits came and went as usual. Saturday came and Mike accompanied me with the intention of clearing some of the dead trees and shrubs from around the house. As we pulled into the driveway we saw Dad walking around in front of the carport with Buddy running loose in the yard.  This was very unusual.  We walked back in and sat him down for dinner, keeping this change of behavior in the back of our minds. On the positive side, he did seem to know who we were, for the most part, but why was he out in the driveway? Had one of his other caregivers just left?

After dinner, I sat down and watched a movie with him for a bit. When it was time to leave, we said goodbye as usual.

"Don't forget to go inside and put your feet up after we leave", I called behind me, but as we got in my car we realized he wasn't standing up on the porch as usual. He had followed us down the brick stairs to the carport and into the driveway. I waved again and told him to go inside but we were not convinced he would follow instructions.

Beside my Dad's property is a little neighborhood. After exiting the driveway we pulled into the neighborhood and parked the car. Mike got out and walked over to the edge of Dad's property and called me on his cell phone. I could hear the wind blowing through the phone as he watched and reported back to me.
"He's still outside....now he's walking toward the front of the house.....looks like he's trying to open the front door..."
"He won't be able to", I said, "It's locked".
The wind continued to whistle through the phone line.
"....okay, he looks like he's bending over to get something. Is there a key under the mat?"
"I'm not even sure there is a mat. No, there wouldn't be a key there. Come on back, we have to go back and help him".
Mike came back and got in the car and we drove back down the driveway. I got out and walked over.
Taking Dad's arm I said, "Did you forget? It's okay, Dad, you just forgot..."
"No", Dad said, trying to cover for himself, "I was just checking to see if there was a card to get in the side door".
Puzzling, his use of the word card instead of key.
"The side door is unlocked, Dad. That's the way you came out."
He looked at me in disbelief.
"It's okay, Dad. We understand", I said.
"Understand what", he replied, almost offended that we didn't buy his explanation.
"You just forgot, it's okay."
"I didn't forget", he mumbled indignantly.
He climbed the stairs shakily and crossed the back porch. We waived and honked as usual and drove around the corner into the neighborhood street. Again, Mike walked back to see if Dad had gone inside.
"Okay", he reported, wind still blowing through the connection, "He's not outside and the light is off. You can't turn out the lights from the outside, right? He must be inside."
Satisfied Dad was safely in the house we went home...but the incident continued to haunt me. I decided to write an email blast to all the caregivers relating what had happened and asking who was the last person there and what time they had left. I was really hoping that when we had arrived and he was in the driveway perhaps we had just missed someone and he had not been out there long. Responses were immediate.

Paula:  "Well , damn! Maybe exercising him by walking around the driveway isn't such a good idea after all."

Hillary:  "I'm no longer walking him out front around the circle, in fact, backyard only from this point forward! Thanks for the warning, very concerning, indeed.."

Bradley:  "We left Grampa's house around 2:30 this afternoon.  I put the kiddo in the truck, then turned around and Grampa was standing right behind me.  I thought it was odd but I was glad to see that he made it all the way out there no problem (he used to be right there when I would leave). Buddy was not outside when we left so he must have gone back inside and then come back out with Buddy at some point.  That is concerning.  Thanks for the heads-up." 

Then it struck me and I responded to all, "Maybe there is no intruder and the gardener isn't leaving the gate open. Maybe Dad is the one leaving it open". 

There was no response. I expect that the possibility might have been pretty scary and no one knew quite what to say. This would take some thought.

Mike and I again discussed something that we had talked about before: calling a family meeting to discuss dad's condition, it's effect on our daily lives and the need to bring in outside help. 

I composed an email:

Hi guys,

I am requesting a "state of our Dad" meeting to make sure we are all in the know about what is going on, his prognosis and the care plan going forward. It is important that we all be in the loop and have a say in decisions that effect our daily lives.
Let's come up with a time and place to discuss.

Thanks. Love you all,
Erin 

I bounced it off of Tom first to see what he thought. I knew Tom also believed, like me, that it was time to explore home care options. Tom agreed with the message and I sent it to both sisters, my nephew and his wife. At first the message was not well received by one caregiver who thought the ulterior motive was to discuss putting Dad in a home (no names here, everyone is entitled to a certain amount of natural reaction to proposed changes). After much discussion and reassurance that this was not on the agenda at all, a place and time was set for a family "summit meeting". There would be two weeks to prepare. We all had topics we wanted covered so that time was spent doing our homework. 

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

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!

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... 



 

The slow leak...

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

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

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

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

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

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

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

Not my job...

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

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

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

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

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

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

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

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

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

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

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

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

 (To be continued)

She-Hulk Gripe session!!

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

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

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

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

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

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

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

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

• Leaking sink in the kitchen causing swollen floor boards.

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

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

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

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

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

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

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

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

Buddy, the Unlikely Hero!

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

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


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

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

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

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

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

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

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

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

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