Happiness Sounds Like Ice Cream!

Time to share a story for One Word Wednesday and today's topic makes me smile!  It's ICE CREAM!  One of the things that mom still enjoys. 

As with lots of Alzheimer's patients, the list of things they are able to relish gets smaller and smaller as the disease progresses.  Top that off with the dying palate that is so common among older adults.  Sweet is usually the last thing they can taste with any pleasure.  Together, that means mom gets ice cream every day...and in case my kids are reading this...your mom would like to have ice cream every day once she's 87!!!

Mom is losing her words.  At first it was just memories, names, the ability to learn new things.  But now she is losing her history and simple words.  But she still longs to communicate.  So she does it with sound.  Sadly, most of her sounds are to express difficulty or pain or frustration (she has NOT forgotten how to say "Damn!") 

But when it's time to have "a little dish of ice cream", mom finds her happy sounds.  Those happy sounds don't come out as often as we'd like, so when they do - it makes the whole family smile right along with mom.  It's become something we look forward to.

Ask mom if she'd like some ice cream and her face beams with delight (and I think, some understanding).  That always gets the sound of a gentle hand clasp and a "Oh yes, I'd love some!"  The sound reminds me of a cross between Oliver and Anne of Green Gables at her first tea.

Bring her the ice cream (which she has forgotten is coming) and she sits as straight as her osteoporosis will let her sit and readies her lap and hands for the dish and she says "Well, aren't you nice?!"  And then a little piece of my mother comes back and she says "Thank You".  It never fails to bring out the best in my kids when she is kind.  (I always have them deliver the ice cream - she doesn't know them and has never been too fond of children, so I set them up to be these little ice cream delivering angels!)

And then you really get to hear happiness.  It cracks me up!  She eats her ice cream with pure abandon.  She's like one of those crazy European chefs or food critics you see on TV who talk with their hands and express with sighs and moans and "mmmmmmmmmm's".  She "ohhh's" and "yummmm's" and licks the spoon and rolls her eyes back in her head and clinks the bottom of the dish to get the very last drop.  She puts the dish in both her hands and lifts it to her mouth to drink every last bit of sweet coffee ice cream out of that bowl. 

Then she peers into the bottom of the empty dish, and I mean REALLY peers! until she decides it's going to stay empty and she sets it on her lap and folds her hands.  Then she forgets that she had ice cream, so that when we come to take the dish and say "are you all finished with your ice cream?" we get to hear her say "Ice Cream?  I would love some Ice Cream...do we have any?" and we get to get her just a little bit more.

Sometimes we get to hear happy when Ellen is on or Sophie is laying beside mom.  Sometimes I get to hear happy when she has buttoned her blouse correctly and I am there to praise her.  Sometimes we get to hear happy when she has had a good day doing her exercises or matching games.  Unfortunately, it's becoming less frequent. 

But at our house, Happiness always sounds like ice cream!  What about you?  Are you ice cream lovers?  What's your favorite flavor?  (Mine is currently Blue Bell Pecan Pralines and Cream)

Home Isn't Always Easy

Sharing my thoughts today for One Word Wednesday over at my website My Sweet Peanut.  This week's word is HOME.

I hear the word HOME and I immediately think "Home is Where the Heart Is".  It's an old-fashioned saying that has stood the test of time.  I have lived a lot of places in my 52 years and I have always felt 'at home'.  I don't long for my childhood home or the town where I grew up.  I feel at home wherever my family is.  They are my heart, so that makes it home.

I cherish home.  I consider myself a homebody.  And I don't think that is a bad thing.  I love to be home.  Even when I was young and my life was more interesting than it is today - I had to find time to be home. 

One year ago, we had a home invasion.  Not the kind you read about on the news where someone gets physically hurt and items are stolen.  Our home invasion was voluntary.  Mom moved in. 

I have never had any doubts that it was the right thing to do.  I completely understand how vulnerable she is.  And how alone she is.  And how financially fragile she is.  Some day I will tell you about how she was robbed blind of all her investments at the time of her second husband's death, but that is for another day.

Today, I want to talk about HOME.  Because in 2 days.  51 hours from now.  Mom is coming home.  And she is in worse shape than she was last summer.  Her short term memory is no longer a 2 minute thing...it is immediate.  She is physically weaker.  She can no longer walk any distance without stopping.  A full cup of coffee is like weight lifting to her now.  She is at a greater risk of falling.  And she is on a new regimen of medications to reduce her risk of stroke, but keep her blood thick enough that she doesn't bleed internally.

As with a lot of Alzheimer's patients, she has lost more of her 'filters'.  She has abandoned manners and modesty.  All logic is gone.  She can look at her legs and ask why we keep her feet there and be 100% serious.  And it's tough to take.

And she is bringing all of that home. 

My home is my home because my husband and my children and my dog are here.  What I mean to say, is this is their home too.  And mom no longer knows them.  She doesn't know me either, not as her daughter, but she knows the essence of me and she trusts me and will listen to me.  She has no idea who my kids are and even less an idea who my husband is.  Couple that with her loss of filter and you end up with some pretty uncomfortable situations.  She says things that are rude.  She asks questions and shouts out demands.  She insults people and swears.  And I know it's not her fault.  I know, but that doesn't keep me from dreading it. 

Insults and swearing and shouting and moaning and talk of bowel movements and anxiety and fear are all coming into our home.  And diapers.  Adult diapers.  And forcing her to eat and drink - because dehydrated mom is terrifying.  And did I mention diapers?

It is peaceful right now.  My son is at football camp.  My daughter is asleep.  My MIL is reading a magazine on the couch.  My husband is getting up and ready.  And Sophie is at my feet, ready to guard our castle if she needs to.  I am writing - my therapy, my joy, my journaling. 

We made it work before.  We will make it work again.  And home will still be home.  My family will still be here.  I feel badly that I can't include mom in my definition of family, but she is no longer my mom.  This woman trapped inside the Alzheimer's isn't anyone I know most of the time.  All the things she taught me are gone.  The manners.  The drive.  The never-quit attitude.  The interest in the world and politics and community.  It's all gone. 

But she is defenseless and she used to be my mom.  And she raised me.  And she nursed me through the measles and chicken pox and 8th grade.  She taught me to work and be honest and stand up for what I believe in.  She made me tough.  She gave me my foundation.  She didn't teach me how to be a good mom, but she taught me how to be a loyal friend.  And she's coming home....

One Word Wednesday: BEAUTY in our backyard (and front!)

My mother was never one to stop and watch a sunset or spend hours in an art gallery or museum soaking up the beauty of a painting or sculpture.  Mom was a worker.  She found beauty in a job well done.  And she had no regrets about it.  So 4 or 5 years ago when my mom became obsessed with the trees in my neighborhood and wanted to talk about them A LOT, it was unexpected.

Our neighborhood was built 20 years ago by one of the major developers here in DFW.  We are brick houses...one 2-story, one 1-story, two 2-story, one 1-story...all in neat little suburban rows.

And each home, each lot, has a Crepe Myrtle tree.  One in the front yard, near the house.  Our streets are lined with Asian Pear trees that are starting to die...sigh....  But the Crepe Myrtles are going strong.  We actually have THREE at our house.  We added one in the back yard and one in the side yard.

And my mother is OBSESSED with them.

She will sit in the front room or on the back porch and become captivated by these trees.  "Oh, look how pretty they are.", she will say and look eagerly at me to see if I have noticed the beautiful, big pink blooms.  "Have you ever seen anything so pretty in your life?", she will ask.  These trees are where she find BEAUTY.

Conversation about their BEAUTY is a constant in our new care giving family.  When mom doesn't know what else to talk about or can't follow a conversation, she will talk about these trees.  When mom is just about to doze off for a nap, she will sigh and murmur something about those flowers.  When the kids can't seem to calm her down, their go-to phrase is "Grandma!  Look!  The trees are blooming...aren't they pretty?"

The main streets in our neighborhood are lined with well-maintained Crepe Myrtles.  Hundreds of them.  Mom loves to go for car rides to see them.  She loves to get in the car and go, but has terrible anxiety if we get too far from home.  So, every day, I put her in the car and we drive about 2 miles just looking at the Crepe Myrtles.  Sometimes we stop and I will take a picture of them and show it to her on my phone and she will smile.  Sometimes we pull to the side of the road just under their branches and I roll down her window so she can look up at the flowers.  Sometimes I cut a bloom off our tree and put it in a glass of water on the patio table by her favorite chair.

This is a new part of mom.  Something that she was always too busy to be in her Pre-Alzheimer's life.  But now, she has time for BEAUTY.  And mom finds her in these beautiful trees right outside our window.

Linking up at My Sweet Peanut for another One Word Wednesday.  Today we got to share stories about BEAUTY...nice way to start my day!

More Powerful than Words

Today's One Word Wednesday prompt is TOUCH.  A little bit weird for me to write about.  I am a personal space kind of gal.  I can hug with the best of them.  I pat shoulders and arms and will rub my kids' backs or run my fingers through their hair without even thinking about it.  I find comfort in touching the people that I love.

But my mom and I have never been that way.  As some of you know or have read - my mom really wasn't that into being a mom.  She loved my daddy (who wanted kids), she was born in 1927 (when all women were supposed to want a family more than anything) and she probably always felt a bit untraditional (as a woman who worked in a leadership role before that was an everyday thing) so she probably thought this might make her "fit in" more.

Not your best reasons for bringing a child into the world - but HEY!  I'm glad she caved to the pressures of the day.  I like being born.  I am so happy to be me.

All of this to illustrate that mom was never 100% comfortable in the role of mom.  We were fast friends.  I was an excellent employee.  Mom and I laughed a lot.  But we didn't touch much.

I remember vividly the times when she would brush my hair.  I would sit at her feet and she would brush my hair and put it in those foam rollers or braids and it was heavenly.  I guess because it happened only 4 or 5 times that I can remember.  I remember having the measles at Eastertime one year - and what I remember is mom putting a cold cloth on my forehead and stroking my hand, not being miserable.

I guess I craved her touch, but it wasn't how I was raised.  So, it's weird to me now.  And although I am comfortable dressing her, bathing her, doing her hair and even helping her in the bathroom - I am really uncomfortable with hugs and kisses....even though I know how important it is to her.  She is so alone in her Alzheimer's.  She has isolated herself her entire life to prove her independence and now she is alone.  Kind of stuck with me - who she raised - who doesn't know exactly how to morph into the person she needs.

I've started by holding her hand.  I think I can easily say I have mastered holding her hand.  It brings her so much happiness.  Not for the reasons you might think.  She likes it because she can show me off.  She can boast about how likable she is.  It's so bizarre.  But you know what - when you can't remember your own name or what day it is - what harm is there in making her happy?  She will look down at our hands and then smile at me and say "I'm so glad you like me, see how much this lady likes me?".  It's sad, but it's sweet too.

On the more difficult days - for me, for mom, for both of us - I will sit down by her feet and lay my head on her knee.  And she will stroke my hair.  It reminds me so much of those few times when she was putting in the braids or the pink foam rollers.  And I think it brings her comfort.  Lots of times, she will doze off or start to hum softly and whatever was making her nuts kind of melts away.

So, even though it is completely out of my comfort zone - as her caregiver and only child - I will do whatever it takes to keep her happy and less anxious.  I will hold her hand and rest my head in her lap.  I will kiss her forehead and convince the kids to give her hugs at bedtime.  I will rub her back and lay my hand on her knee while we are doing physical therapy.  Because the truth is - with Alzheimer's, TOUCH is far more powerful than words.

One Word Wednesday: Small

One of the most interesting things I have experienced since becoming a caregiver to my 86-year-old mother and her over-the-top-advanced-stage Alzheimer's is how SMALL my world has become.

Her need to have me near.  My need to make sure she is safe.  The lack of resources for Alzheimer's patients.  The routine that makes her disease slightly more manageable.  And her anxiety and paranoia when she leaves the house.  All of these contribute to a much smaller world for me.

I used to be able to run and meet someone for coffee or lunch without much thought or planning.  I drove 30 minutes into our downtown area to work every day.  I might travel across town to go to a new farmer's market or boutique or art fair on any given Saturday.  We tried to go to a couple of sporting events, a water park, a play, a museum and a festival or two every year.  We might stay the night wherever Murph's baseball tournament might be instead of driving home.  I saw a LOT of different faces over the course of a week.

Now I stay close to home.  I see my family and the people who are working with mom - doctors, therapists, home health aides, case workers.  We eat at home.  We watch movies at home.  I do all my shopping in a 2 mile radius of home.  If it weren't for my kids - I might NEVER leave my zip code!

My days are smaller too - we eat meals on a regular schedule.  We eat food that is familiar.  We watch the exact same shows every day.  We have the exact same conversations every day.  I might answer the same question 50 times or more every day. And we do as much as possible in the same order every day.  (which is why mom detests the weekends!)

And the strangest thing is - I don't really mind.  I get frustrated.  I get angry sometimes.  I feel "different" than most of my friends.  But in the grand scheme of things, I don't mind.  

I am actually enjoying the smallness of my life.  I am able to focus more on the little things.  I am more involved in my kids life.  I find great pleasure in my family.  I have noticed things in my neighborhood that I have probably been driving by for years oblivious.  I watch the traffic report on the morning news and feel grateful that I don't have to worry about that anymore.  The check out men and women at my local market know me and we chat.  They smile when they see me.  I get gas at the same place every week and know their names.  Peanut's teachers know me and wave or pop over to the window to share something about her day at pick up time.  I have found a rhythm to my new life.

I wonder sometimes if mom has to go into long-term care or this disease takes her sooner than later - will I be able to return to a BIGGER life?  Will I be able to swim in the big pond again?  Do I even want to?  I am still young enough to have lots of working left in me - so I guess I'll do what I have to do.  

But I have discovered a different side of my personality.  A new set of interests.  A new happy place.  And it's here in my SMALL world.  

I guess this is the blessing that comes with the burden of caring for mom.  The gift that is wrapped up in all the sad and awful things that are a part of Alzheimer's.  The silver lining around the dark cloud that hangs over mom every day for the rest of her life.

They say the world is once again a small town - of course, that's because of the internet.  My world is now a small world because of a choice, a disease and determination to make the best of things. 

One Word Wednesday: Frustration

There are weeks when I have to ponder what I will write on a One Word Wednesday.  Not today.  Frustration has been the word of the month!

Some of you may have read the story behind my frustration here.  And now, a blood clot, a trip back into the hospital for a 'procedure' and finally, back at rehab.

I am so tired.  And I feel like I should be more rested. 

I mean, mom's in rehab.  Someone else is doing the cooking, the cleaning, dressing, bathing, worrying at night.  I should be less exhausted and not more.  And I am FRUSTRATED!

And I am convinced I know the root of my FRUSTRATION:  medical professionals who think they know more about my mom and what is best for her than I do.  Or worse yet, medical professionals who know but are unwilling to go the extra mile to make a difference.  (as stated in an earlier post - my mom has been blessed with probably the best doctor and nurse imaginable, but the administration/system and some of the therapists leave a little to be desired).

All you have to do is pick up or log onto any random article or interview or expert on Alzheimer's to know that each and every Alzheimer's patient is different.  The disease has some standard pathways, but there is no real pattern as to how each person will progress or respond throughout their life.

I know that.  The other caregivers in my life know that.  The nice people Maria Shriver talks to on the Today Show know that.  How is it the people at my mom's rehab facility don't know that?

How can they show me the private therapy room designed specifically to work with memory care patients and then not use it?  How can they ask me a series of question and then not listen to me?  How can they see something positive and disregard it because there is no guarantee of it happening again?

I could scream.  I don't, but I could.

Instead - I spend hours and hours at the rehab facility sitting with mom.  Going to her therapy sessions.  Encouraging (making) her stand up and sit down and take a few steps and put on her own shoes and pick up her own coffee mug. 
I've seen the bills for rehab and I've seen my bank account as a caregiver and I find it unacceptable that I am doing the lion share of the encouraging and motivating and pushing for mom's recovery.

And I am frustrated. 

I believe this post can officially be called venting or a rant, but man, it feels good to get that off my chest! 

For the record, today, I am spending the morning at home.  With my dog and my computer and a banana berry smoothie and my shoes off!!!  I still have giant bags under my eyes, but it's a step in the right direction. 

Keep Calm and Caregiver On

We've all seen it - Keep Calm and Carry On.  It's simple.  It's eye-catching and it's great advice.  I read somewhere that they were of British origin and went in search of the history of this simple poster and found it fascinating.  You can read it here:  History of the Keep Calm posters

I suppose I was drawn to them because I am not naturally calm.  I don't fly into fits of rage or tantrums.  But, I am high strung in many ways and obsessive in many others.  The opposite of calm.

So, although I am not naturally calm - I have to really focus into it - I understand the benefits of calm.

Especially these days.  My love of everything in it's place totally works with mom, even in the deepest depths of her Alzheimer's.  My love of everything happening as planned does NOT!

That's where calm comes in.  When I try and push mom to do anything - get ready for a doctor's appointment, be quiet so I can hear someone on the phone or get her to eat a vegetable - she pushes back.  And usually with Alzheimer's "logic" that is not logical.

She will quote conversations that never happened.  She will begin discussions on why she doesn't have to do whatever needs done based on appointments she doesn't have and places she hasn't been.  She will look at her green beans (all 7 of them) and tell me she already ate a helping and doesn't understand why she was given seconds.  ("the staff here is terrible")

It's full-on frustrating.

BUT, if I want to accomplish anything with mom, I must remain calm.  A calm caregiver helps create a calm mom.  She likes a fight.  She loves to win.  Calm throws her off her game. 

Deep down inside, mom knows me - maybe not my name or that I'm her daughter - but she KNOWS me and knows that I am not naturally calm.  So if I can maintain a calm demeanor, that part of her brain that still "knows" me assumes there is nothing out of the norm and makes her less agitated.  Less likely to fight.  More likely to get ready for the doctor or walk down the hallway to lunch or eat that green bean.

I have to use all my techniques to Keep Calm - yoga breathing, prayer, counting to 10, grinding my teeth, sneaking a bite of chocolate.  But it's worth it.  I accomplish more when I can remain calm.  Mom is less stressed, and therefore less confused when I remain calm. 

I guess if you can't beat 'em, join 'em!