Good Friday in the Bubble:L’s Story of caregiving and chaos
“I can’t believe he just pulled the tooth! No warning, no reason.”
He didn’t pull the tooth. He did X‑rays, a thorough exam, and said nothing was wrong with the tooth. “It seems you have inflamed sinuses that are causing your jaw and gums to hurt.”
“NO! I was there, and he pulled it!! You don’t believe me. You weren’t even there.”
I was there. I drove. I promise he didn’t pull a tooth. “He said we need to go see the doctor about your ears and sinuses.”
“I’m not sick! He pulled the tooth without permission, and now he is saying I’m sick and wrong.”
It goes on for a full 36 hours before the confusion and pain are so intense we are not sure an ER visit isn’t far off.
This is the start of some serious confusion and illness that came on so quickly you’d think you were on a roller coaster. It’s not the first time for us—we are nine years into an Alzheimer’s diagnosis, and things get a little out of sorts and without explanation.
Questions I’m asked all the time:
Have you seen a decline?
Do you think you will put her in a home?
Are you done yet?
What will you do when she dies?
What will you do with the cottage when I’m gone, L?
The answers are not always simple, easy, or even wanted by some of the people who ask. Yes, there are changes… I actually no longer put energy into tracking every single one. Some are minor and need no attention. Some are so quick they don’t last long. And some are really troubling and hard to watch and live through. Every day is a new day, and every hour is a question mark on repeat.
Alzheimer’s journey is complicated. There was always going to be a decline. The degree depends on factors I can and cannot control. Outside influences cannot always be managed, but still bring both happiness and stress, depending on her mood and what the outside world brings. Lucidity is relative to the day, the time of day, and whatever is going on mentally and medically.
What I get in the privacy of her personal space, and what you get on the property, is different from what you might get in the car, or in the store, or in the doctor’s office—again, depending on time of day and outside factors like traffic, or a random chat with a person, what the feeling in that chat was, or what she turns it into later when the memory loss loop kicks in.
Logic remains, in stages. The atrophy in her journey is in the temporal lobe, so verbal ability is not gone, and truthfully, may never leave, because that’s not her vibe. Chic knows her mind, but the timeline and details get lost, so she fills in the black spots with past logic and feelings based on your relationship with her.
Your. Relationship. To . Her.
Not me, though. Never me. We have rules, structure, boundaries, and routine here. We have straight talk, but we also have guidelines to make sure we never intentionally rock that emotional boat. Been there, did that with the others. Never fucking ever again. Damn near four years ago, we made decisions based on the chaos, trauma it caused, medical challenges presenting, and the medical and legal professionals. My role for her is varied. My role for the rest. CAREGIVER. I’m a daughter, friend, assistant, poa, a lifeline to the real world when she’s in that vibe. To the rest, I am their villain, gatekeeper, excuse, and former family member. That ended when the reality of “you got what you wanted.'“ settled in and changes for her needed to be respected and handled with her in mind. Not a selfish need to keep to the same dysfunction. Real change.
The dentist visit was on a Monday morning. The bribe to get her in the car was a simple one that always works. Starbucks coffee on the way, and if wanted, a second one when we leave. Is it overkill, maybe for others, judge me if you like, it works, we do it. It wasn't dramatic; it was cute and fun. Hanging out in a place with vaguely familiar ways and people we know. She doesn’t use names anymore, but she sure knows you if she is comfortable and it’s a friendly face. NOTHING went wrong, in fact, we were given pretty easy news…maybe sinus or allergy, maybe some gum irritation, the tooth is healthy, and nothing is wrong. The care team is amazing because we have relationships that want the best for her, and for me, too. They reached out the night of the visit and every day since, checking in and asking if she’s feeling a little better.
The morning of the visit was better than that night. The next day, I called to help clarify her confusion about the tooth. Pulled or not? NOT. Infected or not? NOT.
I recap the conversation for her, and mild acceptance was had because I finished the chat with…’And if they pulled the tooth, you would have had gauze and blood. She couldn’t disagree that her story had holes……
Lots of holes. Tuesday, she was a little wobbly and felt a little dizzy, lightheaded. Mild to moderate pain, but the dental rinse from the dentist takes days to help with inflamed gums, so… day two was kind of expected. We all agreed it’s time to visit the doctor to check the sinuses and ears. This is going south quickly.
Antibiotics. Decongestants. Anti‑nausea meds. So much pain that on Wednesday, the dentist is on the phone, and so is the doctor himself. Handle the pain, handle the cause. 10 am, 1 pm, 4 pm, 8 pm!!! These chats are needed, and the question is what to do next. So much of the added medication on Wednesday should have helped…Wednesday night, she should have been a zombie, and instead, she's full-blown hysterics and scared, sad, defiant, and the cycle continued.
Let’s try to get her to calm down, get her out of pain, and then reassess. Calm the mind that’s stuck in a loop, remove the searing pain, and get some rest. Hope for healing.
Thursday wasn’t getting better, and the “what next” talks resume, but this is when you have amazing care… They called me for an update. They checked in. They see progress that I currently can’t see, as I'm on day 4, for what the actual fuck!!!, as she is taking so many things that should knock her ass out and get her some sleep, but that hasn’t happened yet. And now we are adding steroids. Shit. That’s going to delay sleep and complicate an already complicated situation.
There was a chat on her phone on Wednesday that frustrated her. Again, NOT ME. Her phone, her conversation in text. She took a screenshot (yep, she still does sometimes) and sent it to my phone with a caption..”xyz is an ass.”
She is weak, tired, ill, and in pain. She is not having the vibe in the text with the ‘other’. She said it in her texts to xyz. The other pushed, she pushed back. The show of defiance for both was admittedly humorous because her feisty ass was pretty clear and on point in my humble opinion. She asked that I stop communications in this way. “L, I told you to handle my schedule. Make xyz understand I no longer do schedules~ I put you in charge of that so I don’t mess up.”
“Yes, ma'am, vibes are always here. My update to the others
A copy of what I was sent and a reminder of scheduling routines and structure must be adhered to.
Wednesday 12:06 pm.
“ In order to get on her schedule for visits and outings, the request must come to me on this thread…share for those who have me blocked. I will not change this for any reason at this point in her journey.”
The group text thread is vicious, vile, and to be avoided at all costs. But as she is super sick and very uncomfortable… I did the bare minimum to say I did as asked.
Wednesday 7 pm
“update: seriously, we aren’t playing around. She is super sick, and I will not let this bullshit be a thing. She is on serious medication and doesn’t need the stress. Cause it, or let it be caused, and no one will have access until fully healed and off extra meds. Period and the end.”
No response tells the story. I’m either fully blocked, or all the other assholes are pouting and plotting how to deal.
Using her weakness and pain as a way to work around the evil caregiver is about as bad as not helping keep to what is needed best for quality of life and healthy vibes. Amp her up, and I’ll blow up your world of prideful entitlement and half-truths. #testme #asyouwish
I know me. I’m the coldest, vicious bitch to the ones who deserve it. I am the kindest, sassiest mouth LIFE line for whoever needs and deserves it. Pick the one you want in your corner.
Thursday night, we turned a corner. So many pain meds, antinausia meds, and dental washes with memory meds and mood enhancers, and we have a pleasant, eating soft foods, sassy ass back for the win! On Friday, even more success was found in a 4-hour nap that seemed to make up for the lack of sleep over the last 4 days. Excited for a new episode of Living Alaska (our new obsession), Gunsmoke is out, Living/buying Alaska in.
The rollercoaster ride isn't over, as it's early evening and the lights aren’t out yet. I don’t sleep until she does. I wake 4 times a night to check the camera for lights off or on, noises not common, in bed or in a chair? & more days of the abnormal before we can hope for a Reset in her perceived independent Bubble, she was desperate to create to make this journey bearable for her! Her ability to adjust to the new..
“L, I hate this memory loss, its crazy making.”
“L, what would I do without you and J? You know, zyz and the others would have just put me somewhere and never come around.”
“I know I talk to them, L, but if they wanted to, they would have…”
The loop and the hard. The knowledge versus the narrative and the lies they tell themselves and spectators who like to gossip in the spaces that allow for speculation and opinion, who could have asked all those years ago, but like the villain vibe of L better than the truth they used to know before I no longer gave a damn what the rest of the world believed or thought. They don’t live my life or in her Bubble. They liked L getting knocked down a peg or two. Hey, maybe it was needed to get a better understanding of who needed to go and the mistakes along the way. knowing today what I should have opened my eyes to years and decades ago. #transactionalrelationships
Good Friday came with good vibes. As I write this, several texts were received. Wording is different in each text, but the message is the same from the Same Sassy Ass N we know and love in her Journey.
“ L, I LOVE my new toothbrush!!!”
“Thank you for the sushi dinner, it was so good!!”
“I don’t know what I would do without you and J!”
‘Teeth brushed, and I’m gonna watch that Alaska, so it is so COOL and so many episodes. It comes on every day for hours, how cool is that?”
So to answer the questions…
Am I done yet? Nowhere near fucking done. We just got started.
Do I see a decline? Yup, but chose to focus on the important changes and work around the silly.
“What will you do with the cottage when I die, L?”
What would you like me to do? I’m open to all of your suggestions. But I do love it as is, and I think that discussion should be when that time comes, and we aren’t there yet, right?
Will you put her in a home? Not unless I have no other options, but it was her choice to live here, and I respect her choices.
What will you do when she dies? Grieve the loss of my N, my friend, my coworker. My loved one is in memory care.
I can’t grieve who she used to be, did that years ago when I grieved the loss of the only family and friends I held too close for too long. Shoulda, Woulda, Coulda.
Can’t change what ya shoulda and woulda.
Won’t go back even if I coulda
If you’re reading this as a caregiver, I see you. I know the whiplash of “she said / I said,” the middle‑of‑the‑night pain spirals, the second‑guessing, and the way other people’s questions can land like weight instead of help. None of this is simple, and you are not failing because it feels hard. It is hard.
You are allowed to set boundaries. You are allowed to choose calm over chaos. You are allowed to protect yourself and your person, even when others don’t understand. That doesn’t make you the villain; it makes you a caregiver.
If anything in this story sounds familiar, I hope it reminds you that you are not alone on this roller coaster. There are more of us out here—tired, fierce, still showing up. On the days when it feels like too much, please remember: your effort, your love, and your refusal to give up all matter more than anyone on the outside will ever fully see.
If you are the stalkers, the Others, or the spectators who love the gossip. You're welcome. Keep my name in your mouth. I love hearing the rumors.
