Many of you know my mom has advanced dementia, had a major seizure in April, and has been receiving hospice care ever since. Hospice has been trying to reduce her restlessness and bring more sleep and calm into mom’s life. It’s been a trying time during this hit or miss process of adjusting meds, and if you saw Dear Assisted Living Home, you’ll know it’s also been a frustrating time. That’s why three weeks ago, I decided to move my mom in with me where I could take care of her one on one along with Hospice services here.
And then I changed my mind. It was a decision based purely on emotion. A reaction to distress — my mom’s and my own.
When our daughter was five years old, she had something stuck in her throat that allowed her to breathe and talk but caused her to panic and pace the house in obvious distress. We tried everything to get it out including calling the doctor who said if she can breathe and talk, she’s probably fine. Her panicked pacing went on for about an hour, when she jumped up on our bed all flushed and bothered, stood there with arms outstretched and fists clenched, and yelled in desperation, “SOMEBODY DO SOMETHING!!!” I brought her to the ER, and four hours later, with my daughter asleep in my arms, the doctor said she probably got a toothbrush bristle stuck in her throat which seemed to have worked it’s way out.
“Somebody do something!” is said to this day in our home and it always makes us smile. But my point is, this is how I felt about my mom. She’s progressing quickly, she’s agitated, her caregivers are agitated and I jumped on the bed and yelled “SOMEBODY DO SOMETHING!!!” Mom needs her family, her daughter, we need to bring her home with us! We need to do something!
Since I left Minneapolis a month ago, mom has become completely incontinent of bowel and bladder. She is no longer able to feed herself, and is having more difficulty swallowing. Walking is the only activity mom can do on her own, but she’s losing this too and a wheelchair is in her near future.
The window to move mom came and went, and I missed it. Her dementia moved so slow the first eight years or so that I wasn’t prepared for her recent rapid decline. Mom needs total care now and to remain in familiar surroundings — she won’t be going anywhere. But we’ll be going to see her. My two children and I are traveling to MN soon because Jake will be working there this summer and we wanted to make a road trip out of it.
We just returned from a week long trip to California to attend our son’s college graduation and participate in “the great dorm clean-up.” Don’t misunderstand, it was a joyous occasion — but one that included the ever present sense of a mountain to climb against a ticking clock.
The week, from my point of view.
Arrive! Meet Jake! Learn he needs to be vacated by Monday at 8am!
Visit dorm, resist heart attack, dismiss any notion this will be a vacation.
Feel sense of panic and an unseen freight train quickly approaching.
Try to help.
Hear Jake say he has it “under control” and will “take care of it later.”
Go to hotel, fall into bed, dream of son being buried alive in dirty clothes.
Go to Bookstore. Give college more money.
Meet Jake with thoughts of garbage bags and haz-mat suits swirling in my head.
Try to help.
Advised by son with four years of high-priced problem solving skills that dorm room can wait.
Tour Pasadena, hike a canyon, eat a two-pound burrito.
Pick up Jake’s newly tuned-up mountain bike from bike shop.
Pick-up large bike box to ship other (road) bike which still needs to be dismantled and packed.
(The road bike will fly home with us, the mountain bike will fly home later with Jake.)
Jordan and her calm brother on our Pasadena hike.
Allowed to help in dorm room, make small dent.
Attend graduation luncheon while Jake’s $900 mountain bike is stolen from his vacant suite.
Jake looks for bike and makes unproductive police report.
Take advantage of Jake’s unfortunate distraction, make BIG dent.
Wonder where I went wrong as I’m engulfed in piles of dirty clothes and 4 months of grime.
Commiserate with other speechless parents drowning in their own son’s sea of procrastination.
Realize my son is “normal,” stop blaming myself, join “parents of messy sons club.”
Do five loads of laundry. Husband dismantles and packs road bike. Dorm room is half done.
Dinner out with Jake’s friends and their families. Reservations for 48!
Greet father-in-law and brother-in-law who arrive from NY.
Meet Jake for brunch in Dining Hall. Give college more money.
Resist asking about dorm room progress.
Commencement at 1:30.
Increase son’s net worth.
Goodnight and good luck to Jake who will spend his last night packing.
Go to hotel, fall into bed.
Receive text, Jake requests assistance between 7:30 – 8:00 in the morning.
Realize the job requires zero emotion and reckless abandon. I cannot go.
Husband goes to dorm, I go to Starbucks. I enjoy my first ever Caramel Dolce Latte with my daughter, we leisurely sit by the pool, and I realize:
1. It’s my first relaxing moment since we arrived on Thursday.
2. I am to blame for my stress. I mismanaged the blurry line between helping and letting go.
3. I have serious issues with letting go.
4. I finally understand the obsession with Starbucks.
Jake packed up and moved out on time, and my husband returned unscathed. We drove to San Diego to visit family and celebrate two more college graduations with a homemade Italian feast. We toured San Diego, sat on the beach, ate the best Mexican food EVER, and traveled 14 hours to arrive home at midnight on Wednesday.
To close, my son may be messy, and he certainly procrastinates, but I couldn’t be prouder of him. He focused where it counted — on his coursework. Jake went to a demanding school, he worked harder than he’s ever worked, and in four years he walked out with a degree in physics. For that, among other things, I am very proud and grateful.
When you told me the other day how my mom is showing signs of agitation, that she resists re-direction, gets into everything, and that she sometimes makes fists and gives dirty looks, I was really thinking —
And your point is . . . ?
Mom has a brain disease. She has advanced dementia, Alzheimer’s or something that is suffocating her brain and making her behave erratically in the process. Mood swings, agitation, and a departure from reality are expected.
Please be patient and kind with her.
Instead of complaining, tell me how you are accommodating my mother’s advancing disease. Because when you tell me she’s making a fist — I hear that she’s frustrated, and that YOU need to slow down and be patient with her.
Please meet her where she’s at.
When you told me that she broke the night light in her room, I was thinking that it shouldn’t have been there and that she’s lucky she didn’t cut herself. I remember going into homes that weren’t childproof with my very young children and feeling like I was surrounded by time bombs. The glass vase on the coffee table? BOOM! The beautiful floor lamp? CRASH! You should know by now that my mother is like a 5’3″ “toddler” who gets into things.
Please safeguard your valuables and childproof your surroundings.
When you complain about my mom, it feels like daycare complaining that my toddler broke a crayon or ripped a page in a coloring book. Which probably explains the puzzled look on my face and why I don’t apologize.