If It’s Not Alzheimer’s, What Is It?

A jumbled up puzzleIn “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.

Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has.  Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”

With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with.  Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.

But we didn’t really know what my grandmother and great-grandmother had.  And we don’t really know what mom has.

The doctor jumped to a conclusion and so did we.

There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed.   With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.

Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care.  There are over twenty different types of dementia including rare forms — one of which my mother might have.

I feel a little foolish and naive about not questioning mom’s diagnosis.

It’s too late for diagnostic testing on my mom.  She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.

If we want to know what mom has, at this point, there is only one way to find out — an autopsy.

Autopsy is a scary word, and scary to think about.  But I’ll be thinking about it.

How important is it to know what mom has?  How will we benefit from knowing?  What’s the downside of not knowing?

Have you had to make this type of decision before?

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.

Gratitude: A Prayer Meditation

I’m going home for a week on Saturday, and I’m preparing for my trip by selecting two pair of shoes that will go with six different outfits and plow through slush and snow.

I’m also mentally preparing for the changes in my mom that are sure to be evident, and for my ability to join her in “Alzheimer’s World” where nothing makes sense, but where I need to go to truly be with her.

I’m grateful for this time, and on Valentine’s Day, wanted to share a gratitude poem that I love.

Gratitude:  A Prayer Meditation

Source of All Blessings
I am Grateful
for My life
for the Blessings
of
My breath
the beating of My heart

Source of All Blessings
I am Grateful
for Beloved Ones who
share life with me
those in our world beside me
and those in worlds beyond my knowing

Source of All Blessings
I am Grateful
to share life with our Human Family
Jewish, Christian, Muslem, Buddhist, Hindu, Sikh
May we walk gently upon our Earth

Source of All Blessings
I am Grateful
to be one with All Creation
the flight of birdwings
the swirling of blueshoals oceans deep
the runnings of wilderness creatures
the sway of forests green

Source of All Blessing
I am Grateful
to be part of the spiraling
of all space and time
beyond my imagination
Yes and again Yes I am grateful
to always be here
where else could I go?
For all this and more
I am Grateful

                                         ~   Rabbi Warren Stone

Sweaty Sweethearts In The Huffington Post

A few weeks ago, Huffington Post sent a shout out for photos of couples exercising together.  So of course I obliged and sent in a picture of Vince and I before we ran the Shenandoah Apple Blossom 10K last May.

Here’s the HP article titled, “The Perfect Workout Partner: Why Couples Who Sweat Together Stay Together.”

Once you get through all the icky stuff about passion and blood flow, you’ll find Vince and I in the 9th photo.

Do you exercise with your partner and do you agree with the article?

I sent HP a nice, sweat-free pre-race photo, but I think this sweaty post-race pic tells a better story.

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

 

 

Racing Alzheimer’s: Mom’s New Year Resolutions

The funny thing is, it didn’t occur to me the Alzheimer’s I’d be racing, would be my mom’s.

New Year Resolutions are like a Bucket List, only with a deadline.  I’ve been writing down resolutions for years now, with some previous goals being to participate in Alzheimer’s research, learn how to meditate, lose 5lbs. (of course!), and last year to run a 10K.

As I thought about my Resolutions this year, I kept going back to my mom who didn’t have any.  I couldn’t help but wonder what her resolutions would be if she had the capacity to understand her short time left.  What would she put on her list?  What would she like to do just one more time?

Since mom couldn’t make New Year Resolutions, I made them for her.   Based on what I know about her, these are the things I think she would like to do this year — one more time.

Mom’s 2013 List:

  • Go to hometown of Wadena, MN to walk down main street and visit old friends
  • Eat buttered macaroni mixed with ketchup, and crumbled bacon
  • Go on a boat ride and fish for Walleye                                                     
  • Walk barefoot along a lake shore
  • Eat a BLT with a homegrown tomato
  • Visit the zoo
  • Drive downtown
  • Play with puppies
  • Watch a softball game at the park
  • Visit Minnehaha Falls
  • Watch the movie “Born Free”
  • Hold a baby
  • Listen to “Hallelujah Chorus” by the Mormom Tabernacle Choir
  • Lay in the grass and watch clouds overhead
  • Sing Christmas Carols

This list looks do-able, but it will take some planning to accomplish everything during the course of my visits home this year.   I may be delusional thinking this is even attainable — mom may not be up for a 3-hour road trip to Wadena, let alone a boat ride — but I’d like to find out.

Alright, let’s be honest.  This list is for me.  Mom would be fine without this list, sticking to her small existence of 3,000 square feet that includes oatmeal, the Price is Right, and a fenced in yard.

But let’s do it anyway!  Let me see the glimpses of joy these things might bring, knowing full well that *poof* they’ll be gone in minutes as if they never happened.  Let me live in the moment with her, and be fully present as she experiences these forgotten things that she loves so much.  Let me witness the little girl she’s become laugh and be carefree.

Let me watch as mom revisits herself and remembers she’s still here.

I’ll take pictures as we go through the list, then someday, if my children ever make such a list for me, I hope they include “Look at photos of Mom and I.”

Adding “Eat Buttered Popcorn” and “Dance to Play That Funky Music” would be appreciated too. : )

The Alzheimer’s Storm II: Caregiver Stress

An inconvenience is an adventure wrongly considered.    ~  G. K. Chesterton

Mom folding laundry with one of her caregivers, and her housemates at the table in the background. There are 5 rotating caregivers for 9 people.

Parenting is one of the hardest jobs there is, and I’m pretty sure the fierce animal love we have for our children is what makes it possible to parent day after day without drowning ourselves in the bath water.

So it’s sort of a surprise to discover the feelings are pretty much the same when caring for an aging parent.  We’d do anything for them, many people do — and they pay for it with high stress, poor health, loss of income, and blinding exhaustion.

The Alzheimer’s Association says there are more than 15 million Americans providing unpaid care for persons with Alzheimer’s and other dementias.  That’s about the population of Virginia and Washington combined, which is a lot of bath water.

I’m a long distance caregiver for my mom.   While this brings it’s own set of challenges and a fair amount of guilt,  I am not in the trenches like so many are, and so I really have no right to talk about caregiver stress.  I get it.  But if my mom lived with me, here’s what I would do to try and avoid excess stress.  You can call this a “dream case scenario.”

  1. Join my mom in Alzheimer’s World
  2. Have a schedule
  3. Do what she loves
  4. Laugh & Find the funny
  5. Pick my battles
  6. Give positive energy
  7. Move her body
  8. Encourage & Compliment
  9. Get outside
  10. Give her “jobs”
  11. Take her to adult day care

For me personally?  I would try to:

  1. Eat healthy
  2. Exercise
  3. “Sleep when the baby sleeps”
  4. Pray, Meditate, Pray
  5. Ask for help
  6. Accept help
  7. Laugh
  8. Hug
  9. Love
  10. Scream when I’m alone in the car

Sometimes I imagine that my mother is living with me as I go about my day.  What would she be doing while I make dinner, take a shower, or right now — while I’m on the computer?  Having mom here would probably be like having a two-year-old again — she would be at my side, doing whatever I’m doing, but instead of asking curious sweet questions and me being an eager teacher, mom would be saying the same things over and over and over again and I would be counting my breaths.  I mean no disrespect

There is so much time in between those pie in the sky items listed above.   So.   Much.   Time.

Everything would shift.  Mom would move to the top.  Things wouldn’t get done.  Movies wouldn’t be watched.  Legs wouldn’t get shaved.  Vacations wouldn’t be had.  Stress would be hard to avoid.

I’m positive it would be the hardest thing I could ever do.  But I’d like to believe I’d be grateful for the time with my mom with an understanding that it won’t last forever.

I’d like to find out if I’m right.

Are YOU a caregiver?  What are thoughts on this?

 

Find “In The Alzheimer’s Storm” Part I HERE, and look for “The Alzheimer’s Storm:  Family Conflict” in a later post.

~  Joanne

Keeping It Simple: An Alzheimer’s Prevention Diet

If ever there was a good excuse to eat unhealthy food, the Super Bowl would be it.  There were chicken wings, chili, cornbread muffins, and chips at my house.  Then my little Super Bowl party of two, (my husband and I), treated ourselves to a scoop of Ben & Jerry’s Karamel Sutra around half-time.  Note: eating ice cream while watching Beyonce shake her post-baby, fit body takes some pleasure out of the ice cream eating.

Our game fare could have been better, but I’m not beating myself up too badly because healthy and whole food is the normal diet around my house these days, and we’re eating more fruits and veggies than ever in the form of a drink, thanks to our new Vitamix.

There’s being a lot written about nutrition for brain health lately, and I’ll admit it can be a tad complicated and overwhelming.  That’s why I like this recent blog post on Maria Shriver’s website who is an Alzheimer’s champion by the way.  The post is written by neurologist Dr. Richard Isaacson, one of the authors of “The Alzheimer’s Diet,” and what I like about it is he keeps it simple.  I like simple.  I’m guessing you do too, so I wanted to share.

Here’s what the good doctor says are three general recommendations for a healthy brain diet:

Maximize:

  • High-quality lean protein. The importance of protein for brain function cannot be overemphasized. Examples of recommended protein sources include fish high in DHA (e.g., wild salmon, mackerel, lake trout, herring, sardines, and albacore tuna); poultry (skinless white-meat chicken and turkey); lean meats (beef) that are hormone free; egg whites; and low- or no-fat dairy products.
  • Vegetables (especially dark-green leafy vegetables) and berries (especially strawberries and blueberries). Note that these healthy choices do contain low-glycemic (good) carbohydrates that should be tracked, as limiting one’s overall glycemic load has been found to be essential for long-term brain health. A good website for checking the glycemic load of specific foods is at http://www.mendosa.com/gilists.htm. The relationship between glycemic load and reduced memory function is complex and beyond the scope of this article.

Moderate:

  • Monounsaturated fats (e.g., extra-virgin olive oil, peanuts, avocadoes) and polyunsaturated fats (e.g., nuts and seeds).
  • Complex carbohydrates (e.g., whole grains, quinoa).

Minimize:

  • Simple (high-glycemic) carbohydrates (e.g., white bread, cane sugar, high-fructose corn syrup, and corn syrup in general).
  • Saturated fats (eliminate all trans fats).
  • Fried foods and dried foods (potato chips, corn chips, crackers, and dried fruits with sugar).
  • Cakes and muffins.
  • Bacon and hot dogs.

Dr. Isaacson goes on to say, “other great brain foods include seeds and nuts (flaxseeds, walnuts, and pecans), legumes (small red beans, pinto beans, and black beans), unsweetened red or purple grape juice, curry and turmeric root, black or green tea, unsweetened dark cocoa powder, and dark-skinned fruits.”

As I mentioned in “Read Ingredients. Avoid Crap.”, ignore the food pyramid and try to keep it healthy, wholesome, and pure.  An easy way to do this is by eating foods with ONE ingredient like fish, chicken, spinach, kale, strawberries, almonds, etc.  And of course purchasing your food in the most organic and chemical free form possible.

It’s okay to eat unhealthy on occasion, we’re all human.  The important thing is to forgive yourself, and get right back on the health wagon.  Now what do I do with those Super Bowl leftovers?