A little comic relief...

Taking care of Dad also means taking care of his pets. We all try to keep in contact with each other regarding what has and hasn't been done for each pet fairly regularly. This is usually accomplished by text. Texting on the go, for me at least,  often involves voice to text.  It also includes some interesting text fails.

As I have mentioned in early posts, my dad has a parrot named Mickey.   Mickey enjoys eating fruit so whenever fruit is on Dad's menu we will set some aside for him as well. One day I brought some melon to Dad's house and after we finished eating I cut up the remainder,  put it in a storage bag with Mickey's name on it and put it in the refrigerator. Then I attempted a voice to text message to Hillery that should have read: I sliced up some melon and put it in the fridge in a bag marked "Mickey".

A few minutes later I received a reply: LOL!  Omg!! Just one bag? Is it a garbage bag?

Huh? What the heck did I send her to get that response? I went back to re read my text...it read: I sliced up someone and put him in the fridge in a bag marked Mickey.

Note to self: voice to text is not your friend.

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.
 

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

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