What I remember the most from my recent visit with my mother is how she looked. She has a look to her that’s difficult to describe, but which I’ll never forget. It’s a shuffling, stooped look combined with an ashen complexion and empty eyes that I can best describe in one word — GONE.
Does that sound awful? I don’t mean it to. Is there a better word to describe my mother? I’m sure there is, but I like this word right now. Gone baby, gone.
I suppose I could get sentimental and tell you how she’s here too. How she always says my name at some point during my week long visits. How she isn’t looking at me when she says it, but releases it like a butterfly to the wind for me to gently catch. And that she probably doesn’t know why she says it, but she does — because something remembers, and that means part of her is still here.
She’s here and she’s gone all at the same time, and I see one or the other depending on the moment, my perspective, and even my mood. She can be hard to find, and sometimes seeing my mother as gone is easier than finding her here.
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Here’s a quick report from my mom’s hospice nurse yesterday:
They are still trying to move mom’s sleep cycle. She was previously sleeping from 7pm to about 3am, which is bad enough, but now she sleeps from 6pm to 1 to 3am, which isn’t good. Mom needs more help eating, and she looks like she’s lost more weight. (Weigh-in next week.) She is still walking, but is not as steady on her feet. These are the things we are watching — sleep, eating, weight, walking.
The good news is that mom appears comfortable and at ease. There is no distress in her face or demeanor and she is still able to smile and be happy. This is amazing to me and such a testament to the power of a positive spirit.
Out of respect for my mother, I will never post pictures of the “gone” woman that I described. She looks pretty good in her pictures, which is one of the reasons Alzheimer’s can be so invisible.
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.
My family met with hospice yesterday and my mother qualifies for care under the diagnosis of “debility,” also known as failure to thrive. It’s my understanding that mom didn’t qualify under “dementia” because she can still walk. When you look at my mom you wouldn’t think she’s ready for hospice, but when you put everything together it makes sense:
requires assistance in all Activities of Daily Living (ADLs)
weight loss — 13 pounds since December
Saying YES to the “comfort care” of hospice means saying NO to life saving measures. It indicates surrender and turning towards death rather than away from it. It means 911 will not be called if my mom has another seizure, and antibiotics are an option if she gets pneumonia again. It feels a little bit like playing God, but mostly, it just feels like compassion.
Mom supported Jack Kevorkian’s mission and believed we should be as kind to humans as we are to animals. Mom would approve of this hospice plan because if she could articulate her thoughts, I’m pretty sure she’d say she’s had enough.
Hospice will need to re-qualify mom in three months to determine if services are still necessary, but she isn’t getting better and I’m guessing she’ll be re-approved.
So there it is. We don’t know how much longer little Ruthie Hall from Wadena, MN will be with us, but I am not ashamed to hope for a swift and peaceful transition.
My mother, who has advanced Alzheimer’s disease, had a grand mal seizure last Thursday that left her unconscious and earned her a trip to the hospital. She’s back home and appears to be recovered, but she’s declining rapidly and we’ve been advised to contact hospice.
It’s been suggested that my mom has less than 6 months to live. While I’m not in denial and wouldn’t be against a quick and merciful end to this madness, how do we know when a person with dementia is ready for hospice? How do we know my mom is nearing the end of her life?
Experts say the average duration of the disease from diagnosis to death is 8 – 10 years. But people can succumb to the disease in 6 years and I’ve heard some hang on for 20 years, which makes predicting the end for someone with dementia an educated guess at best. Mom is about 8 years in.
In “Mom Update: February 2013,” I shared about mom’s decline and how her caregiver thought she had about a year left. Now I’m hearing she won’t be here beyond the summer, which is a pretty bold statement, but one I take notice of since mom’s caregiver has twenty plus years of experience watching people like my mom come and go.
When I say mom is declining rapidly, it’s difficult to describe since she’s not the typical Alzheimer’s sufferer. (See “If It’s Not Alzheimer’s, What Is It” for more on this.) Mom walks and “talks” and is still able to feed herself, she laughs and jokes and holds the cat . . . and yet, there’s an emptiness to her eyes and an absence from the here and now that permeates all that she does. She’s in the room, but she’s not. It’s as if mom is a warm vessel going through the motions of daily living and carrying out lifelong mannerisms — but the captain is gone and mom is on auto-pilot.
I’m quite often asked if my mom still knows who I am, and for the first time I can say that I don’t think she does. And yet . . . even as I say this, I’d like to believe there will always be something that recognizes daughter . . son . . husband. Something that just knows this is family. . . this is love.
This is the standard hospice admission criteria from ALZonline. Mom meets 4 of the 6.
Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:
Person cannot walk, dress, or bathe properly without assistance.
Person is incontinent.
Person has little or no meaningful verbal communication.
Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
There are other existing medical problems accelerating terminal disease such as CHD, COPD, Renal disease, Liver disease, etc.
We are meeting with hospice on Saturday to determine if mom qualifies for services. If she does, hospice support will be provided in her home and will augment the care she’s already receiving. If she doesn’t, we’ve had a trial run and know what to expect when the time comes.
I think it can go either way, and I’m not attached to either outcome.
Quite frankly, I don’t have the energy to get into what we need to do to mitigate the Alzheimer’s tsunami heading our way. It’s all been said before, and I wouldn’t have anything new to add. Besides, I couldn’t say it any better than Nancy Wurtzel in “Dating Dementia” where she succinctly describes where we’re at and where we’re headed. She also offers practical advice when she says:
We’ll need many more medical personnel and facilities. We’ll need more education and understanding of the realities of dementia. We’ll need to provide tangible support to the caregivers who are on the front line. We’ll need ways to improve the lives of those living with Alzheimer’s disease.
I will say this — this country is in big trouble if we don’t make substantial advances on all fronts. We’ve been warned. We know what’s coming if a cure isn’t found. Like Nancy says, “a big plan is required and it will take commitment and innovation.” At the very least, let’s not act surprised when the tsunami hits.
You know the saying “hope for the best, but plan for the worst?”
With Alzheimer’s disease, the hope is in the plan.