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.
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.
