3 am alarm notification: C Door unlocked...
I feel a burning sensation behind my eyes, and my muscles are weak like jelly. I am uncertain if the door will lock again. Sometimes it remains unlocked for just a few seconds, and sometimes we begin the day. The next few minutes will determine how this day unfolds.
We have established systems and procedures to manage this situation, as it has occurred several times this month, last year, and the year before.
The door will unlock when the day commences.
The door will lock again, granting us another hour or more of sleep.
The alarm remains active, the door remains shut, and we are not yet at risk of missing out on much-needed sleep. If you recognize the signs, you can anticipate what will happen next. I am still unfamiliar with all our signs; mostly, it's a hit-or-miss situation. This means that even the professionals cannot provide us with clear guidance:
I have lived with:
- [Insert names or descriptions]
I have worked with:
- [Insert names or descriptions]
Currently, I live with:
- [Insert names or descriptions]
I care for:
- [Insert names or descriptions]
Every journey has signs, or it does not. Each situation is different, as every brain is unique to its owner.
Today, 5 am seems to have arrived prematurely with the door unlocked.
Peering out the window, I observed the lamp aglow, signaling the time for coffee.
It's 3 am, and we are all set for a snug morning with the blanket and iPad ready for the day ahead. Perhaps catching up on the news or engaging in a game of Scrabble.
The days are lengthening while the nights are shortening, reminiscent of Alaska in June where daylight extends for 23 hours. Nevertheless, this is an irregular event that is hard to anticipate.
Several factors can trigger this situation:
Stress
Changes in medication
Fear
Unfamiliar noises
iPad notifications
Phone notifications
No particular reason...
The usual advice is: Disable notifications and power down devices.
The response: It cannot be done without the willingness to keep the devices off.
Counterargument: You are in control; remove the devices at bedtime.
The response: Stay here this evening and try that; let me know how it goes.
Which is it? Am I to have control, or am I to leave it to the gods and accept whatever may come? You can't have it both ways...
Control is a misleading tale. The one unlocking the door holds the power even today.
If you take the devices, you will face:
Anger
Fear
No way to pass the time until the door unlocks
The unrealistic perception is that a caregiver has all the control and directs every move.
Let me share the absolute blunt fucking truth of stage 4/7 of Alzheimer's disease:
The one being cared for has all of the control.
Emotions are in the mid to late teens.
The memories are of the ages 9-65.
The complexity and dilemma elude most sane people; It is just what we currently do: Start the day.
It gets easier with time, but patience isn't always easy at 3 am.
Coffee can help, but the challenge is confirmed when the conversations are repeated.
With coffee and meds, I walk in greeted with the friendliest Good Morning.
Roughly 10 minutes later, the real reason we are awake comes to light.
The traumas of the past are going to be rehashed for the billionth time. The evening before had a few red flags, but here's to a bit of luck, right? Right~no chance to be had on this day.
The simple need to find a solution to the present by rehashing the past, disappointments, and regrets. Very little is to be done except listen, drink the coffee, and answer when asked a direct question. The routine is pretty simple, and by 6 am, the excuses to take a break are to water the plants, get breakfast ready, and prepare for work.
"I don't eat breakfast."
"Will you drink a smoothie with me?"
"Sure, I like smoothies."
"Ok, I'll be back in a little while with a smoothie before I start work."
"Ok"
The reality is simple~ not everything is as it seems.
I know it is a vague statement, but I can't find another that fits better. Some days, the door never unlocks; some weeks, the door unlocks in the wee hours of the morning. No rhyme, without reason. In recent days, the lamp doesn't turn on till I unarm and unlock the cottage, and only then does it register it is time to wake up. Knowing when the changes are simply momentary or if we hit a new routine is challenging. Only the body and the mind of another know for sure.
My question I leave you with tonight:
How scary it must be to go through this alone; Could you imagine what it is like to walk this journey without someone to help when the times are tough?
The question that stays with me each moment of each day:
The why I do as I do...
Lesli, do you know how strange it is to feel your brain shrinking?
My answer each time I'm asked:
I really don't know, could you explain it to me?
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