The Vanishing

The strangest thing about the death of my mother is the vanishing.  That a person can be on this earth one minute and gone the next, seems like a cruel magic trick that I’m still trying to figure out.  As I reflect on her disappearance, I realize the slight of hand happened years ago and the vanishing was just the grand finale.

Dementia is a terminal brain disease.

I knew this but I didn’t know it.  Terminal is just a word I used to add weight and truth to mom’s disease because you’d be surprised at how many people don’t know this.  So I said it to help raise awareness and educate, and to help me say out loud in a euphemistic way — my mother is dying.

I thought I was prepared, even ready for my mother’s death.  But it was the concept of her death I was ready for, not the real thing.  In the beginning, “has dementia, will die” was loud and clear in my subconscious, then towards the end my concept was that death would be a kindness that couldn’t come soon enough.

But vanishing from the face of the earth?

It may have helped if I had replaced the word die with vanish and had been saying things like “my mother is vanishing from dementia,” or “my mother is receiving hospice care and could vanish in three to six months.”

A friend warned me about this.  She said “you may think you’re ready, but when your mom dies it will feel like you’ve been hit by a truck.”   I believed her, but “hit by a truck” was another abstract concept.  Another friend said the death of a parent is a “ground-shifting sadness.”  This rings true as I try to find my footing on this new and  shaky ground.

My mother vanished last month.

I’m sad, but I’ll be okay —  I’m just a little surprised at the size of the truck.

~  Joanne

Mom Update: Her Final Goodbye

My mother’s long goodbye came to an end on Saturday, July 6th at 12:26pm.

Thank you for all your love and support.

RUTH JOANNE NELSON
September 11th, 1937 — July 6th, 2013

**********

 A Celebration of Life
Thursday July 11th at 11:00 am
Living Spirit United Methodist Church
4501 Bloomington Ave. So.
Minneapolis, MN  55407

Mom Update: May 2013

Mom listening to a Music Therapist sing some of her favorite songs. This was a beautiful and very emotional moment.

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.

I adore this picture of mom and my nephew, mom's grandson -- Javier. Javie visited from Texas in April and mom was smitten with him from the start, apparently thinking he was a love interest.

Dear Assisted Living Home

Mom picking rocks on Leech Lake, MN 2007.

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.

Please stop complaining!

The toddler can’t help it and neither can my mom.

Signed,

Daughter Bear

Mom & Dad, Brother John, and my foursome in 2009.

Yes, Mom Is Ready For Hospice

Celebrating mom's 70th birthday in 2007 in northern Minnesota.

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:

  • terminal illness
  • requires assistance in all Activities of Daily Living (ADLs)
  • weight loss — 13 pounds since December
  • pneumonia
  • seizure
  • difficulty swallowing

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.

2007 Mom always enjoyed swimming.

 

Mom Update April 2013: Is It Time For Hospice?

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:

  1. Person has to be in the end-stages of the disease,(stage 7 or beyond).
    • Person cannot walk, dress, or bathe properly without assistance.
    • Person is incontinent.
    • Person has little or no meaningful verbal communication.
  2. 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.
  3. Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
  4. 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.
  5. The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
  6. 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.

Mom Update: February 2013

Mom and the beloved resident cat Kylee.

There are no mistakes, no coincidences.  All events are blessings, given to us to learn from.  ~   Elisabeth Kubler-Ross

“I think your mom has about a year,” is all I remember from my first visit with mom last week.  I didn’t get a chance to ask questions until our Care Meeting on Wednesday, but by then, I could see why my mom’s Caregiver would say this.

The first thing I noticed is mom’s diminished level of engagement.  She’s lost and far away, and has an emptiness to her eyes that I’ve not seen before.   And for the first time since mom’s diagnosis, I’ve thought to myself, “my mom is brain dead.”

You can take that literally, because Alzheimer’s is another word for a dying brain.

The last time I visited in September, mom could be directed to do things on her own.  Now she needs help with everything — eating, dressing, undressing, escorting to the bathroom, hygiene, toileting.  Everything.

Mom is going down fast.  That’s what they tell me, and that’s what I see.

Mom’s Caregiver thinks she has something other than or in addition to Alzheimer’s disease.  After spending time with other residents in mom’s Home with Alzheimer’s, I can see what she means.  While one woman colors in a coloring book, mom doesn’t understand that she needs to pick up the crayon to color.  Another 94-year-old woman with advanced Alzheimer’s uses complete sentences, and is highly engaged.  Not true for mom.

I recently shared my New Year Resolutions for my mom which is more of a list of things to do before it’s too late.  But it’s already too late for some things on the list like traveling to her home town which would be too much.   But maybe when the weather is warmer, we can do the easy things like walk barefoot along a lake shore or watch clouds overhead.

Mom has rounded a corner and I believe I have too. 

I’m less frantic, more realistic, and more at peace.  If it’s true that mom has a year, then there’s nothing left to do now but enjoy her — and make sure she’s loved and gets good care.

Mom & Dad at her Home ~ I love moments like these.

Ruth Update: So Long Emesis Nemesis

The last time Mom was at my house in May 2010.

Mom has been having what I like to call “tummy trouble” and what mom’s caregivers like to call “emesis” but what is actually, bouts of vomiting since the end of December.  Mom went to the doctor, she had tests, and we were getting nowhere trying to figure out the cause of the tummy trouble.  Finally, in an effort to put an end to the emesis, and to avoid further testing, mom started taking generic Prilosec last Tuesday, and I’m happy to report she hasn’t vomited in 10 days!  I’m told she is acting and eating better too.

I talked with Mom today, and she sounds really good on the phone,  but she also sounds like she’s progressing quickly.

Something new — mom doesn’t know what to do with the phone when someone hands it to her.  Now I hear about 10 seconds of instructions before my mom says hello. “Hold it like this.  You talk here.  Put that part to your ear.  No, you don’t push the buttons.”  This is new.

Mom has also started making up words.

So long emesis nemesis.  Hello unrelenting, got her by the balls on your course of destruction, Alzheimer’s disease.