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.

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.

Bird Watching and Dementia: A Beautiful Idea

Teaching a child not to step on a caterpillar is as valuable to the child as it is to the caterpillar.  ~ Bradley Millar

My mother loves all animals.  As I watched my mother and father take in strays, rescue and care for injured or abandoned wildlife, and stop to assist various creatures off the roads, I saw kindness and compassion — this might be their greatest gift to me.

We once herded a mother duck and her ducklings, (to include stopping traffic),  three blocks to the nearby creek after she apparently lost her way.

Mom loves birds too, Robins especially.  There was a Robin who built a nest over the downspout on the house every year, and during the sweltering months of summer, mom would set out water for that “poor panting momma.”

Now my children are animal lovers.  They were raised to watch bugs and spiders rather than kill them, and to know they are the stewards of all creatures — especially when help is needed.

When I saw this video, I immediately thought of my mom and how much she would enjoy this bird program for people with dementia.

There’s a large bird feeder right outside the picture window where Mom spends a lot of her time.  Here she is filling the feeder with bird seed.

Finally, I couldn’t write about my mother’s love of animals and birds without including this heart-warming video of people coming together to make sure a mother duck and her ducklings made it safely to water.  Given the opportunity, my mother would no doubt be one of these helpers.

“Until one has loved an animal, a part of one’s soul remains unawakened.”  ~  Anatole France

Namaste,

Joanne

Calgary Couple Rises Above Early-Onset Dementia

I stumbled across this short video of a dear couple in Canada who are living with early-onset dementia.  The husband was diagnosed in 2008, and his wife is his caregiver.  The wife’s gentle spirit is so beautiful.  And the two of them together make me feel like I’m witnessing love of the highest order.