A Day In The Life Of An Alzheimer's Patient and His Daughter

Some of you know that I’m back in El Paso to help my mom take care of my dad. I’ve taken a month off of PAing and living a pretty amazing life with the greatest community a girl can ask for, to help in the transition of my once wonderful, caring, loving, funny, athlete of a dad to an almost stranger from mom’s care to others. Whether we decide to put him back in hospice, find a perfect foster home, get him into the VA nursing home or have someone come to the house to provide respite, I’m here to help her figure that out. My gut says the VA is best, he's among folks who get him and they have a memory unit with activities, so I'm rooting for this one. While we get everything in order, I’m participating in his care from morning to night and sometimes through the night and waking up and doing it all over again. This is a similar routine my mother has done by herself for the last 15 years that has gotten exceedingly worse in the last 2-3 months. She’s so exhausted that she got just a few hours of total alone time this morning and she came back looking 10 years younger. It’s amazing how the stress of a caretaker can be so overwhelming, yet it’s essentially a thankless job, especially those taking care of dementia patients.  I don’t have children, but those who do and have also done this job say that the adult caretaker is the hardest working person on the planet, adults are stronger, stubborn, uncontrollable and violent at times and then when you ask for help, people look at you like you’re crazy because a grown human being should be able to control him or herself. So, I can’t describe to you how difficult the last nine days has been for me or the last 15 years for my mom, but I can chronicle a day in the life, just so you can thank your lucky stars that you don’t have to go through this. Or if you do, that there are others out there who understand. I told my friend the other day that I would never wish this disease on my worst enemy or their family.

This is a mishmash over 3 days and nights.  

7:44 am- Last night was super uneventful for my dad, for the rest of the family, not so much, a consequence of having someone with dementia, high-stress overload for everyone but the person with the disease. I meditate and set my intention for the day. Try to do yoga, but too distracted.

8:15 am - I go downstairs as I hear him moving around. He's taking the pillow cases off the pillows and then collecting the dogs pillows. Last night we decided to split shifts between my mother and I, I get morning to about 2 pm shift.

8:25 am- Shower time. He hasn't had one in three days after a certain bathroom mishap. Mom tries for a while and then asks me to take over. 

8:26 am- I put my bathing suit on and get ready to bathe my patient. I leave his clothes on because I personally never want to see my dad naked, even if he is my patient. He becomes like every other patient I have taken care of, except stronger and combative. 

8:50 am- No luck. He won't even go into bathroom with me, he knows, somewhere deep inside that gelatinous brain.

8:55 am - Finally get him in bathroom, lock doors, he takes one step in and then I try to pull him in. He almost falls but doesn't, phew! Then turns and becomes violent, takes both of my hands and twists my arm. I look into his eyes and realize that he is no longer my dad, I pray that he doesn't hurt me and get ready to kick him in the balls if he does. He finally lets up. Mom is in backyard, she couldn't hear me anyway. She would have helped, but my pride in wanting to be successful in this is too strong, blasphemous pride. 

9:04 am -Get him out of the shower and he's soaked with socks, boxers and my tiny Chicago t-shirt he put on last night.

9:10 am - I give in and give him his sedative. Finally lets me take his socks off and dry them off, he's not taking anything else off, so I put on a terry-cloth robe

9:15- 10:55 am- Play with foam blocks, dance, eat breakfast standing up throughout the house, move furniture, pet dogs, open and close doors, tell intelligible stories, listen to music the whole time, finally get him to take my t-shirt off to switch out. I give him another pair of boxers, he is lucid? (don't know if that's the right word) enough to know changing in front of me is wrong, goes to kitchen and changes them out. He puts on a flannel shirt, nice slacks, new socks in under an hour! 

11:10 am- Ask him if he wants to go to park. He says yes. Yesterday was a really good park day. We kicked the ball and he showed me some basketball tricks, I was looking forward to getting him out.

11:30 am- Still working to get him in my car, at least his smiling, so I don't push.

12:10 pm- Park play only lasts a few minutes, he's tired and walking with a forward bend, a side effect of the sedative, so I'm scared he may fall and we go back to car.

12:15 pm-Phone call from a friend's aunt who owns a visiting nurse service in town while parked in front of park. She gives me a lesson about life and dealing with parents with Alzheimer's. I cry on the phone with a total stranger because it's only been four hours of this and I can't hold it together. My sympathy and empathy for my mom and her 15 years of this takes over. We make plans for the visiting nurse to come on Saturday. 

12:30 pm- Charcoaler Hamburgers!! Lunch time. Not healthy especially for my pops brain, not ethical, not anything I would choose if stress wasn't my driving force, but today it is, so we scarf it down. We eat in the car and he eats the whole burger, some fries and drinks all of his raspberry lemonade.

12:45 pm- Back home, after about 10 minutes of trying to get him out of car. 

1:00 pm- Back to manic as soon as we enter the house, he's moving furniture, lamps, desks, unplugging things, walking from the living room to kitchen, outside. Finally trap him outside where it's absolutely beautiful and we sit on the ledge and talk. He's finally calming down. He sits in a chair and starts falling asleep. 

1:30 pm- Mom comes home and we talk for a bit. Dad has to get a chest x-ray to complete the Agent Orange compensation file. She takes him and I finally exhale.

4:14 pm- They come home and I ask how it went. Mom says 'it didn't'. They went to the VA and he became belligerent. Four techs and one doctor couldn't get him to get a simple chest x-ray. Then she had to call security to help him back to car. Poor mom, it never gets easy for her. She also said he took his seatbelt off and rolled the window all the way down while driving back. She's made the decision not to drive alone with him any more. 

4:30 pm- Midge comes over after school for food. I hang out with my dad in the living room while my mom cooks and they talk. He walks outside and sits down. My mom gives me food to give him while he's outside. He takes two bites and then goes to the trashcan, I save the food from being dumped and then put on the table.

5:00 pm- He sits at table and finishes his food. 

5:30 pm- We start getting him ready for bed or actually we start getting ready for bed and preparing for him as well.
6:45 pm- Still trying to get him to lay down or at least rest in the bed to watch tv with my mom. His legs are itchy at night, whether its a consequence of the leukemia or dry legs, I don't know. Mom rubs oil on his legs and he's a little bit calmer. He gets up after leg massage, walks over to dog pillow and picks it up, then picks up other pillows, keeps walking around den, mumbling away. Finally takes off his clothes and folds them by where bed used to be. Mom moved their bedroom to underground den years ago, after he fell down the stairs.
6:55 pm- Walks to his side of the bed and lays down. I push chair and ottoman to other side of him and rub his chest over his t-shirt with peace and calm oil on my hand from putting in diffuser for sleep inducing effects. It works for a few minutes and then he rolls up and sits on edge of bed.
7:20 pm- He's up and at it again. We're tired and let him do his thing.
8: 00 pm- Back in bed, I put my set up next to him again. He's laying down but with eyes open.
8:34 pm- Back up and sits down next to dog pillows. Dogs all around him. They love him, everyone does, cause he's awesome. Mom's desperate and wants to go to sleep. She asks him to lay down with him for the 40th time. She says she needs help, dad always loved to help and if he lays down he can help her.
9:03 pm- He's back in bed. I cover him and rub his shins, she holds his hands.
12:10 am- I wake up to my mom yelling at my dad 'open your eyes! that's not the bathroom!' Dad is in corner thinking it's the toilet. She manages to get him to the toilet.
12:30 am- Only 20 minutes to get him back in bed!
12:31 am- Same set up, chair and ottoman with daughter on one side, mom holding hand on other,
3:30 am- I get up and go upstairs to get some comfortable sleep.
6:45 am- Wake up to spend some quiet minutes with my mom who is already downstairs cooking, cleaning, loving normalcy of life for a few moments before he awakens.
8:20 am- He sleeps in!! Woohoo!! I hear him shuffling downstairs, he's taking the blanket off the bed, putting it back on, I watch him for a second from the landing, my dad loved to make nice bed, he taught me that primed you for a good day. I'm praying for that today. Finally, I walk downstairs and start our day.

I don't write to get people to feel sorry for me, I write because I feel like it's important for people to know. This journey has made me a more sympathetic person, a more understanding PA and the most patient daughter who knows and understands unconditional love. I know we're not the only people in the world going through this, though at most times it feels this way and I want people to know they are not alone. I want to try to spread compassion and empathy through education and information. I don't like that my mom feels uncomfortable taking my dad out in public because of people's looks or remarks. We're all connected and one day, it could be you or your loved ones who are going through this. I feel like I have the greatest group of people supporting us and sending us love and light, but I can see how this can become isolating and how you can fall into the idea that the world is against you and him. I choose to live on the side that the world is rooting for us. How could it not be? When you're a kind, generous, loving, service-oriented spirit, as my dad was for so much of his life, as was my mom, the world and its people can only give back good things. I keep forgetting this while sometimes overwhelmed in this situation and then I get a message from a friend I haven't talked to in years or a text message from an acquaintance or a facebook comment from someone I've never met, who offers guidance and resources and my faith is fired up once again. Or my gentle giant of a boyfriend calls me in the myst of all the chaos and just his tone and a few words rewire me back to security and peace and love and I'm reminded again of the world I live in. So I can't thank you enough for reaching out, posting, praying, thinking about us during this time, it's feels like I'm being wrapped in a blanket of love every single time I see your words. Keep them coming!
I also write because it's the only outlet I have that is not dangerous to my health. I used to participate in a variety of numbing experiences, but life is better when you are actually forced to feel through feelings and work through your stuff. I'm a writer, it's in my soul and right now, my my soul wants to create, because it doesn't know what else to do.

Tonight, my father is in hospice. After a terrible night, we were in crisis and my mom and I made the decision to try to sleep tonight, as rest allows for more lucid decision making. Unfortunately, it's 3:30 am and we're both awake, me writing, her listening to her radio. We're at a slight decline on the anxiety though and will feel more peace once my dad gets permanently settled in what I hope and expect to be the best place for him and his situation. A place that will honor the man he once was and will provide safety and comfort for the man he has become.

Thank you for reading.

Cause our world has been turned upside down, but we're still solid.

A Letter To Medical Professionals

Dear Medical Professional,
How's it going? My hope is that you're well- rested, fulfilled, happy and loving your life of practicing medicine. If you're not, I'm sorry and I feel you, I really, truly do.
Can you remember a time when you decided to go into medicine and the healthcare world to serve and take care of people? Maybe it was when you were a kid and you thought your pediatrician was the coolest because he had a waiting room full of toys or some really fun way of making you feel not so scared about going to the doctor. Or perhaps it was during Biology class as you learned about all the cool biological systems and how they work together in harmony to make our bodies run efficiently. How about after you volunteered for a mission trip where you were assigned to take care of an asthmatic child using a make-shift nebulizer machine and you saw him breathe without struggle? Whatever it was, take a minute, close your eyes and think back to that moment. Can you feel the joy well up inside of you?
It may be hard to do, I get it. In modern day sickcare, we have little time to make any connections that remind us of why we went into medicine in the first place. The five to seven minute visits with patients where we are expected to review history, current concerns, review labs and x-rays, titrate or start medications, perform an exam and still maintain a rapport with our patients, make it difficult. We're constantly bombarded with paperwork or messages or insurance documents, medication refills, prior authorizations and making sure all of our notes are completed and submitted so that our hospitals and organizations and our staff can get paid. Most of us have a 40-hour work week salary, but often work 10, 11, up to 12 hours a day, 5 days a week, I know my supervising physician does. Very little in todays practice feels like medicine the way we dreamed of it being practiced. To me, it feels like conveyer belt factory medicine and I'm pretty sure my patients feel the same way.
Can you remember a patient who changed the way you approached your practice? Is there someone from rotations or residency or your first few years of practice who really impacted the way that you formed your bedside manner? For me, it was gentleman from my Internal Medicine rotation in Phoenix who came in for a physical and left with what I thought was a massive cancer in his abdomen. He was 45 years old and had not been to a doctor in a couple of decades. His wife forced him to finally make a visit because he was losing so much weight. I knew what he had. I ran to my supervising physician to share the case and deliver my findings and diagnosis. He went in and very sensitively and tenderly explained what we had found and the steps that would need to be taken. Dr. W knew how words and delivery could detrimentally affect the outcome of someones health. When your doctor tells you something like "you have cancer" or "you have HIV", there is a hypercatecholamine and cortisol release that make you all kinds of crazy, suppress your immune system, create havoc in your body and mind usually unnecessarily.
This recently happened to my momma. My father was diagnosed with CLL and had to get a bone marrow biopsy. When my mom went to pick up the results to take to his regular doctor, she read "Multiple Myeloma/HIV/CLL". To read this about your Alzheimers diseased husband was alarming to say the least. She knew it wasn't true, but for a few moments her heart stopped, her body froze and she was lost. When she returned to talk to the physician, he brushed it off with "Oh, your husband is in his 70's, no one will ever believe he has HIV" or "the writing is too small for you to read anyway". This is not only inaccurate, but incredibly condescending and totally insensitive. What happened to the humanity in this guy? The empathy and ability to put yourself in your patient shoes and think "what if this was my wife's pathology report I was getting?"
So this letter is a plea. A request for you to dig deep and find that healer that wanted so badly to go into medicine for the right reasons and not for the prestige or the money. That stuff doesn't go to the grave with you. Maya Angelou said "People will forget what you said, people will forget what you did, but people will never forget how you made them feel".
If this sickcare system is going to get any better any time soon, we have to imbue our everyday interactions with love, compassion, empathy and emotional intelligence. We have the medical knowledge, we know the textbook medicine, if you've graduated and are practicing, this is a given. The most imperative piece of the puzzle is the part you can't teach, the treating your patient the way you would want to be treated. The golden rule applies here too folks.
My other recommendation is to return to your passions and your hobbies. According to God's Hotel, by Dr. Victoria Sweet, doctors in the Middle Ages weren't just doctors, they were doctors and professors, doctors and farmers, doctors and herbalists, doctors and barbers. How cool is this? People have made fun of me, administrators have questioned my dedication because I don't work full-time. My patients would argue differently and say they've never met a provider as dedicated as me, (thank you Mr. Wright). See if you can find a way to adjust your schedule to explore your passions outside of medicine, that way you won't get burnt out in seven years like I did and you can give your patients 110% when you are in their presence.
We are blessed with peoples lives everyday. Patients trust us with their most treasured commodity, their health. Be grateful that you get to touch peoples lives on so many different levels and use this as an opportunity to teach, empower and educate them so maybe they won't need us as much next time.
Thank you for your reading. I hope you can reignite that spark that led you to this profession in the first place. My momma, your patients and I will thank you if you can allow it to catch fire once again.

Sincerely,

Erica Benedicto, PA-C

Happy Fathers Day Pops!

Today is Fathers Day and I called my daddy this morning just as he was groggily waking from his slumber. Like a well-prepared actor he called me sweetheart throughout our conversation, our very short conversation that consisted of him answering yes or no questions. We said our goodbyes and I hung up the phone.  A few minutes later my momma called me back and said that she had just thought of something. I asked her what that was and as I could her her voice thicken and tears welling up, she said "You know, out of everyone in our family, your sister, nieces and nephew, me, your tia, you're the only one who has had a dad, a real dad". My momma doesn't cry often and I could tell she was way out of her comfort zone, so she said her piece and abruptly said "I love you, bye" and before I could respond, I heard the dial tone.
She was right and though my father no longer knows me of today, somewhere deep in his mind, the second he hears my voice, he realizes that his 'sunshine', his sweetheart is there. I thought about this as I went to my last day of Yoga Teacher Training, the day of our graduation. I knew that it would be an emotional day, so I guess my mom prepared me by loosening up the tear ducts. As I sat with those words from my mother, I thought of the tragedy once again.  The world has lost a great man. If my dad was well and of sound mind today, he would be a rock star of a yoga teacher. He was always physically active, my whole childhood, we would either go see him play volleyball, basketball, softball or baseball.  He loved to teach and even adopted Cathy, one of my first friends in El Paso, to play volleyball and taught her everything he knew. He was so proud of her and her talents just as much as he was of me in gymnastics. That's the kind of generous man he was.  My dad was always the teams' favorite guy, so energetic and such a team player, he loved people as much as I do, believing everyone had a special gift to bring to the planet. He was always so fair and all-encompassing and no matter how crummy a player you were, he always tried to make you feel like the MVP. Life was always fun when my dad was around, get-togethers were livelier, his workplace more tolerable, the games more equitable and our home was always a dance party. He told me about going to college on a wrestling scholarship in Missouri and how he was the only dark-skinned dude on the team. For a Puerto-Rican/Filipino man to move to middle-America in the 1960's to join a college team and fit in so beautifully was a testament to his charisma and dynamism. He was so popular in fact, he was rushed by multiple fraternities who wanted a piece of the rock star. They held him highly to say the least.
I guess in looking towards the past and the way things were, it always seems more sunshiny than it may have been, but I'm ok with this nostalgia, for me, my dad was the best daddy in the world.
So today is a special day for me in so many ways. A year ago today, I left Santiago for Paris after completing a 500 km trek through the Camino de Santiago and had a life-changing transformation. Today I graduated from a program that has completely altered my approach to life and people and has also transformed my spirit. I cried and talked about my feelings and experience, completely disarmed, without apologies and all my yogini sisters accepted me anyway. You ladies are truly perfect creatures. And it's a day I get to pay homage to the man who modeled a zest for life and people that I hope I can carry on throughout my practice, relationships, work, and life. Thanks for all the memories dad, the cheesy jokes, the hard lessons, the dance instructions and for just being the coolest dude in the world. I love you pops.

My Father, My Hero

It's been a while since I've known my dad as anything but a man with dementia who calls me sweetheart and reciprocates his love for me in hugs and words. Growing up, I can remember him teaching me how to ride a bike and perfect my gymnastics routines, "point your toes, straighten your legs!" He was gentle, warm, loving and always so supportive. He was the bees knees and the cats meow. I'm pretty sure there isn't an evil bone in his body and his acceptance of people for who they are is something else. He lived and let live, truly and authentically. He called me sweetheart or mami until he started getting Alzheimer's, then I just became Erica, until just recently once again.
My pops rarely talked about his experience in Vietnam until a few years ago. The memories were so profoundly stored away that I believe its what led to his Alzheimer's, a subconscious attempt to forget it all. This and the fact that in Vietnam he was exposed to Agent Orange. When he finally did speak out, I learned about his first assignment, solo, isolated on a hilltop, monitoring for any intruders. He would radio back to central if he saw anything suspicious. They would drop food for him every week. I'm pretty sure I've told this story before, but it has stayed with me because my dad was such a social dude. To leave his sweet soul alone on a hill-top as his very first exposure to war was a form of torture. I can imagine him terrified and constantly on guard, never having an opportunity to just breathe or even smile.
Later his stories became increasingly disturbing. He talked about having to take care of these 'kids', though he was only 24 at the time and seeing them die left and right and in his arms. My dad joined the Peace Corps to avoid the draft. Killing people was never in his realm of thought or possibility, until it was forced upon him.
Now he lives, but is not alive, he just wakes up, eats food, sits on the couch and sleeps the majority of the day. We've chalked it up to Alzheimers thinking that it was a natural progression of the disease. My momma is hypervigilant about his doctors appointments and lab work. I bet he sees a doc about once a month. But in the past few months his blood count has been low and they have finally figured out why.
My dad likely has a type of leukemia that is linked to Agent Orange. We find out for sure tomorrow, but it's not looking good. I'm terrified I'm going to lose my dad after all this time of already 'losing' my dad. I hang on to the few moments of lucidness that allow me to get hugs and kisses and 'I love you sweetheart' from him, because they still exist and they won't if his body leaves the Earth.
Thank you dad for serving our country. Thank you to all you Veterans who have given your mind, bodies and souls away to the devil that is mandated violence. I hope you can find beauty and love despite all the trauma you endured.