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.

Alzheimer’s: Why Are We Doing So Little?

I love TED Talks!  If you don’t know what I’m talking about, go to TED.com and search for anything — but please come back.  TEDMED extends into the world of medicine and wellness, which is where the video below is from.

Gregory Petsko, Chair of the Department of Biochemistry at Brandeis University, gives a presentation on Alzheimer’s disease that is easy to understand and with a sense of urgency.  In the video, Dr. Petsko tries to answer the question, “Why, in the face of this oncoming tsunami of Alzheimer’s, are we doing so little?”  He then offers four possible answers.

1.  Stigma.  The way Alzheimer’s impacts the brain and ultimately the actions of the afflicted can come across as a mental illness.  They act strange and we don’t know what to do with them — so we pretend they’re not there and they become invisible.

2.  We all get senile as we get older right?  Wrong.  But so many people accept the senility of an Alzheimer’s sufferer as normal.  It’s not.

3.  Alzheimer’s patients are not able to advocate for themselves.  They can barely communicate effectively  — how would they ever launch a plan to improve care and funding for this disease?

4.  The caregivers who are caring for their loved ones are just too tired and overwhelmed to take on anything else.

So who will speak up for Alzheimer’s disease to garner more attention and funding? 

Perhaps it’s people like you and I who are watching our loved ones succumb to this disease, but who still have a VOICE.  Rather than wait and hope the disease doesn’t find us, what if we were proactive in our efforts to fight this disease?  And what if our fight made such an impact that funding and research was increased and the number of Alzheimer’s sufferers was decreased?

Learn more about what you can do to help elevate Alzheimer’s from a disease to a cause by becoming an advocate for the Alzheimer’s Association.  I have joined the cause.  I don’t know what I’m going to do yet, but I’ve joined.

This is a 16 minute video that’s packed with information.  Check it out to see why I now imagine little garbage trucks going to the recycle bin inside my brain rather than the garbage dump.

Mom: A Brief Biography

Mom, 3 yrs. old, 1940

My mother, Ruth Joanne Hall was born 1937 in Wadena, Minnesota. She was the oldest of three children born into a middle-class family. She had in many ways an idyllic childhood — along with a successful father and nurturing mother, she was a Girl Scout, had a paper route, sang in the church choir and yes, she even wore bobby socks and poodle skirts as a teenager. Mom graduated from high school in 1955.

Mom in 1959, age 21. On the back of this photo, in my dad's handwriting, it says: "She's Wonderful!"

After graduation, Mom completed secretary courses at the Minnesota School of Business, where she learned shorthand, dictation and other “cutting edge” office duties. Mom went on to work at IBM for five years where she was like a “Mad Men” secretary with cat eye glasses.  She loved her job.  She met my father during this time, they married in 1960 and my older sister soon came along in 1962. Mom stayed home after that, but her secretary training would prove beneficial throughout her life as she ran our household like a business. She had impressive organizational skills and balanced the checkbook down to the penny every month. (My dad benefited from this arrangement until it all came crashing down with my mom’s Alzheimer’s diagnosis.)

My parents, 1959 -- channeling Ralph Lauren.

My parents had three children under four years old in 1966. It was only after having children of my own that I appreciated how difficult this must have been for my mom. Especially in those days without the modern conveniences we have now. I have vivid memories of my mom rinsing out cloth diapers, washing them in an old fashioned tub, running them through a “ringer,” and then hanging them on the line.

Marilyn, Joanne, and John -- 1968 I think.

When the three of us were grown and mostly out of the house, my mom began working part-time as an office assistant at a nearby company. She loved it and I’m sure she felt like she got part of her life back. She had about 20 years or so to rediscover herself, travel and spend time with her grandchildren before her Alzheimer’s diagnosis came in 2005 when she was 68.

The long and slow descent into the fog of Alzheimer’s is her journey now. Click Here to see what Stage she is in today. Her family is on that journey with her and as many of you know, it’s a long and challenging road.  It’s been called “The Long Goodbye” — I can’t think of a more perfect description for Alzheimer’s disease.

My parents, 2010

 

 

The Stages of Alzheimer’s and My Mom

Narrated by David Hyde Pierce from Frasier, the clear and concise video below has helped me understand the approximate stage of Alzheimer’s my mom is in.   The brain function descriptions without all the medical gobbly goop is as refreshing as it is educational.

It’s obvious that my mom’s Alzheimer’s is progressing along the described path.   According to this video, there are 7 steps in the progression of the disease, and I would say that my mother is in Stage 4, moving into Stage 5.  This is how the video description is playing out in my mom’s life:

1.  Mom has zero short term memory.  She doesn’t remember what she did yesterday, 2 hours ago, or 2 minutes ago.  She repeats herself quite a bit.

2.  Mom’s words are disappearing.   She has great difficulty forming coherent sentences and uses “filler” words and phrases to help with communication.  Quite often, the end of her sentences have nothing to do with the beginning.

3.  Mom can no longer solve problems, grasp concepts and make plans .  She can’t be left alone because her lack of judgement and problem solving makes her a risk to herself.  She is not able to accomplish a task without one on one guidance.

4.  Mom has become more emotional and I hear that she has her moods, but unfortunately, I haven’t been with her enough lately to witness her mood swings.

The remaining stages are approaching quickly, as there’s already been incidence of hallucinations. The average Alzheimer’s course is 8 to 10 years, and my mom is in her 7th.

Click on the video below to see how Alzheimer’s disease moves through the brain.

What Is Alzheimer’s Disease?

What’s Alzheimer’s?  It had to happen sooner or later, so it may as well be now.  This is dry stuff, but it’s short and to the point. Stick with me.

Alzheimer’s disease is the most common form of dementia. Derived from Latin, dementia literally means “without mind”. There are static forms of dementia caused by a single event such as a traumatic brain injury, and there are progressive forms caused by disease that result in a slow deterioration of the brain. Alzheimer’s is the latter and accounts for roughly 60 – 80 percent of all dementia cases.

Alzheimer’s disease is named after Aloysius Alzheimer, a German neuropathologist who is credited with publishing the first case of “presenile dementia” in 1906. Since then, scientists have learned that Alzheimer’s is characterized by two unusual types of neuron damage in the brain: Plaques and Tangles. While there is not a consensus on plaques and tangles being the cause or the result of Alzheimer’s, they are described the following way.

Plaques are a sticky protein fragments called beta-amyloid that builds up in between nerve cells.

Tangles are tangled fibers of a protein called tau (as in “wow”) that build up inside cells.

Most people develop some form of plaques and tangles as they age, but people with Alzheimer’s tend to develop far more and at a faster rate. Plaques and tangles can form throughout the brain as part of the normal aging process, but the part of the brain important to memory is the initial target in people with Alzheimer’s before spreading to other regions.

So far, scientists do not know the exact role the plaques and tangles play in Alzheimer’s disease. But most experts believe they play a crucial role in blocking communication among neurons and disrupting critical processes that are responsible for cell survival.

It’s the destruction and death of these nerve cells, believed to be caused by plaques and tangles, that results in memory failure, personality changes, and difficulties carrying out activities of daily living that is the hallmark of Alzheimer’s disease.

And now you know! Thank you for reading to the end. : )

For more information, go to Alzheimer’s Disease Research.