An Invitation To Walk, Raise Money, and Help End Alzheimer’s

Racing Alzheimer’s has a Team and needs Team Members!
Save the date and join me for the
2013 Shenandoah Valley Walk to End Alzheimer’s!

 

Event Details

The Alzheimer’s Association Walk to End Alzheimer’s® is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research.

WHEN:  Saturday, September 28th (Rain or Shine)
Check-in 8:30 am     |     Program 9:30 am     |     Walk 10:00 am

WHERE:  The Willows at Meadow Branch
1881 Harvest Drive    |    Winchester, VA  22601

WHAT:  Choose between a 1 mile or a 3 mile walk option.  Start line will be at the facility and walking will be mainly on walking paths and sidewalks.  Walk routes to be determined.

HOW:  Click Here, go to Register, then Join A Team, find Racing Alzheimer’s.

This is the first time I’ve created a team like this and I’m very excited about it!  I have a very achievable goal of recruiting 10 walkers and raising $1,000.  This is a great way to raise funds and awareness while having fun.  And if you have personal experience with dementia, this is an opportunity to join together and DO SOMETHING!

Please let me know if you have any trouble registering or have questions about this Event.

I hope you can join us!

     ~  Joanne

Mom Update: June 2013

Grandma seemed to understand that these two young people were "somebody special." Jake (22) and Jordan (20) enjoyed visiting with their grandmother. (How about those shorts?! Yeah, they're gone now.)

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.

Tying shoes, zipping up, getting dressed, gone.  Bathing, toileting, hygiene, gone.  Conversation, comprehension, self-determination, 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.

Hugging, smiling, humor, here.  Walking, talking, helping, here. Laughing, loving, saying my name, 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.

* * * * * * * * * * *

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.

I like to think my mom's heart knew her grandchildren. She was clearly happy to see them, she was a little emotional, and she had a lot of hugs to give.

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.

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.

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

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.

Minneapolis Bound: February 2013

Next Saturday I fly from the cold state of Virginia to the freezing cold state of Minnesota.  With one friend going to Puerto Rico this month and another on a Caribbean Cruise, I can’t help but wonder if I have it backwards by heading north.  But this is what it’s come to — my airline ticket money is saved for home, and heading south while tempting, just wouldn’t feel right.

There isn’t a big To-Do list this time, my plan is to mostly chill and spend time with my family.

But if you read “Racing Alzheimer’s: Mom’s New Year Resolutions” recently, you know that there is a list — it’s just not my list.  I hope to knock some things off mom’s list by doing what we can that doesn’t require warmer weather.  I know require is a relative term, but this Minnesota girl has become a cold weather wuss since leaving over 20 years ago.  I mean, there’s really no reason to be outside when it’s below 40 degrees.

A warm coat, chap-stick, and mom’s list — let’s do this.

Hopefully I’ll be able to smell spring in the air when I return.

Bon Voyage!

~  Joanne

FUN FACT: It's so cold in Minneapolis, there's a Skyway System of enclosed pedestrian footbridges that connect buildings in Downtown Minneapolis enabling people to walk in a climate-controlled environment. The extensive Skyway system is renowned as the largest continuous system in the world. http://en.wikipedia.org/wiki/Minneapolis_Skyway_System