Wednesday, September 24, 2014

The Mother (get it?!) of all UNEXPECTED days!

Jumping back over here to share yesterday (which I feel MUST be shared for posterity and perspective) on another One Word Wednesday over at my website My Sweet Peanut.  Today's word is UNEXPECTED!



One of the funny (to me, at least) things about blogging is that back-of-your-mind thought, no matter what is happening, that at some point - you HAVE to write about it.  Details get mentally jotted down so you can remember to add that to your post.  Photos are taken (not yesterday - far too personal and unphotogenic) to really accentuate your words. 

And then you sit down at the computer.  And if your day was weird or bigger than life or totally UNEXPECTED - you just don't know where to start.  I giggled.  I played it back out in my mind.  I said a prayer of thanks and decided the best way to write it, was to just WRITE IT.

Yesterday started a bit different than some other days - I was coming off a day of escape and freedom and rare 'me time'.  So, I was probably better rested.  I was definitely basking in the glow of reconnecting with lots of friends.  And I was ready to face my caregiving responsibilities with renewed enthusiasm.

Hmmpphhhh!

My son dawdled.  Eight minutes of dawdling that cost me 5 or 6 laps in the pool. But that's okay - at least I swam, right?  To make up for it - my daughter had a good hair day and liked her very first outfit.  Back on track.

Then it was breakfast time - mom was moving slowly.  Not tortoise-slow, but slow.  And she was needy.  LIIIISSSSSA????  She needed a lot of confirmation and affirmation of every step of her morning routine.  But that's okay too - I was renewed and refreshed.

It seemed to make mom angry.  She was kind of cruel to my kindness.  But there were a couple of variables in play that probably contributed to her mood.  1.  My husband was off work and she doesn't understand or appreciate or enjoy when he is around all day.  and 2.  the pain medicine she takes for her arthritis could not be refilled because it is now "a controlled substance" and her doctor didn't write the correct type of prescription at her last doctor visit.  I, of course, tried to refill it last Friday afternoon - about 30 minutes after the doctor's office closed for the weekend...it just got worse and worse and worse.  The Tylenol wasn't making a dent.

So, the stage is set for the day.

Bad mood.  Extra person.  Achy. 

By themselves, I could have handled yesterday with maybe a Coke Zero and a couple of Tylenol... and maybe a bite of chocolate.

But yesterday wasn't just any day - it was mom's birthday and she had a raging colon (I just didn't want to type the "d" word).

So, every time she heard our 'nice friends' on the Today show announce the date - a look came over her face and she would ask "What day is this?" and I would say "Tuesday"...nice try!  She would keep asking until we got to talk about her birthday.  And she got to say what a shame it was that NO ONE REMINDED HER of HER OWN BIRTHDAY.  Then we would talk about how old she was.  She just couldn't wrap herself around 87.  It added to the confusion and bad mood.

We got through breakfast.  We made it out into the living room where mom likes to nap while I study or blog or wander the web.  No nap today.  She glared at my husband.  She talked over us as we tried to catch up since we hadn't seen each other for more than a few minutes at a time.  And she paced.

The only positive to mom being in a bad mood is the extra exercise she gets.  She paces round and round our home.  Sitting down.  Standing up.  Round and round.  Up.  Down.  I hate to see her that agitated, but my silver lining is the extra exercise.

Somewhere in the pacing and the complaining, mom had an accident.  A #2 accident.  Only the second time ever.  And she was mortified.  Especially because there was a strange man (my poor husband) in the house.  And because she had to ask for help.

I felt like I did everything right.  Respectful of her privacy.  Making it no big deal.  Providing her with everything she needed to clean up, including my assistance if needed.  And then the soiled brief disappeared....

We were hysterical looking for it.  In drawers.  Under cushions.  The refrigerator.  Everywhere.  We thought about the toilet, but it was flushing fine....no way a Depend would fit down the toilet and still flush.  No way my frail mother who can't force the cap off a tube of chapstick could stuff a full-sized brief down the toilet....

And the day went on.  The date was tormenting her.  The smell of her cake baking was driving her batty.  Me disappearing into the laundry room to decorate her cake made her mad and caused some serious LIIIIISSSSSAAAAA screaming.    

AND she had 2 appointments.  Her home health aid came to help with her bath.  And her nurse came.  They have been avoiding getting a urine sample for 3 weeks - it's like no one wants to do it.  Mom is not exactly cooperative, but that's kind of what they do, isn't it?  Anyway, just pile this all on the bad mood.

I picked up her pain meds early, but they didn't seem to be working.  She seemed to be in even extra pain - her right hand (usually it's the left) was really bothering her.  More on that later!

Lunch was awful.  She started asking about lunch at 10:10.  I got her a snack.  She was still eating it when she started asking about lunch again.  Finally after she followed me and asked and asked and asked, I made her lunch (at 10:45) and she complained that she was eating alone.  And not just your everyday variety of complaining.  She went mean.  I know I shouldn't let it, but it really upsets me.  These are the situations you just can't win.

The entire day was about her being unhappy.  Too hot.  Too cold.  Too overcast.  Too bright.  Too much food.  Not enough food.  Too loud.  Too quiet.  Too many people.  Too much to do.  Where is everybody?  Don't we have anything to do around here?  And the pacing...

As the kids got home and then left again for dance and a volleyball game - it got worse.  She started to sing.  And to have very loud conversations with no one.  And then she went into the kitchen and started going through our mail basket and tucking things into her walker basket. 

Then she started opening cabinets looking for snacks.  I think she doesn't recognize things at all any more.  She looked right at boxes of cookies and crackers and trail mix and random fruit snacks in the pantry and little containers of grapes and carrots and berries in the fridge - but she just kept saying how there was nothing to eat. 

My husband and I ate dinner with her.  She was completely silent.  No amount of questions would get a response.  The only time she would talk was if we tried to talk to each other.  And then she wouldn't talk to us - just at no one in particular.  So, we ate quietly.  At least she ate her dinner.

The kids were excited to come home and have cake and ice cream and light her birthday candles and sing and give her their cards.  But right before I was going to light the candles...mom's toilet wouldn't flush.  And then the world backed up.  It was a major blockage. 

We went immediately into homeowner fix-it mode.  And mom lost her mind.  She couldn't understand what all these people were doing in her bathroom.  She made lots of ridiculous statements at all of us to explain why she needed to be in the middle of everything and why we had no business in her bathroom.  It was tense!

And, when you are on the brink of a full sewage back up into your home - patience is scarce.  I had to send mom to her room.  It was awful.  She fought hard.  She got in the way.  She wanted to prove she was in control.  She wanted to understand.  But she couldn't.  And we didn't have time to explain it over and over and over.  It was awful.

Thankfully, we have a home warranty.  Thankfully we knew the right jargon to get our 'emergency' status approved.  Thankfully Jim, the Master Plumber was on call.  Thankfully Wayne, the superstar guy on the phone was the night on call guy.  Thankfully, the staff at American Home Shield (Travis and Tamika) were kind and helpful and quick!  Thankfully, the depend that mom has stuffed down the toilet (there's your explaination for her sore right hand) was in a place that made the repair 100% covered by our home warranty.  Thankfully, the toilet did not overflow to the point of needing to pull up flooring.  Thankfully, my husband was off-work.  Thankfully, my kids were calm and helpful with mom.  And thankfully, she finally went to sleep.

There was no cake and ice cream for mom.  No birthday candles or cards or singing.  We will try again tonight.  I am hoping for a more traditional evening tonight...I guess we'll see.  Right now mom is talking about the "real cute goat" in the living room...I think it's our dog...but it could be a figment of her imagination.  I just can't tell anymore.

I'm just glad she's calmer.  I love it when my husband has a day off, but today I'm glad he's safely at work.  Mom is happier.  The atmosphere is less cantankerous.  All Depends are accounted for.

I'm on eagle-eye duty today.  No more major repair surprises for me today.  Not if I can help it.  No more UNEXPECTED drama.  Just a nice, quiet, Ellen-watching day with mom....I hope!

Wednesday, August 20, 2014

The Best Laid Plans....



The past 3 days have been a whirlwind.  I think we've handled it surprisingly well, but I felt a bit discombobulated until I sat down here to write.  I have taken a breath, I have a Sonic drink, mom is napping, my son is at football and my daughter is on the i-Pad. 

I just felt my shoulders relax for the first time.

I think I can actually tell my story on PLAN for One Word Wednesday over at my website, My Sweet Peanut.  I wasn't sure - even though I was convinced the prompt couldn't have been more perfect.  I was too in the middle of it to think straight!

If you're new here - mom has Alzheimer's.  The all-the-way-gone kind.  No short term memory (and this is not an exaggeration) and almost no long term memory to speak of.  She has flashes from her past that come out in dreams or catnaps or out-of-the-blue conversations that make absolutely no sense in this universe, but are clear as can be to mom.

Mom woke up Monday morning with a sore, slightly swollen wrist.  No evidence of a fall.  No limit in mobility of her hand or wrist.  Probably arthritis.  One of the more advanced, more awful flare ups, but arthritis, nonetheless.

Monday was also the first day of the last week of summer vacation for the kiddos.

And the first day of fall dance for my daugher.

And the last week of 2-a-day football practices for my son.

And the middle of an 8-straight-days of work for my husband.

2 PTA functions.  One cheer get-together.  A pre-season football scrimmage.  The Browns pre-season Monday Night Football game (yes, that is a priority and part of my PLAN!).  Sneakers that need to be purchased.  A Sam's Club run on the docket.  A pantry clean, 2 closet reorganizations and a donation run that all needed to happen.  Plus all the regular stuff.

We had PLANS! 

And because mom has to be supervised 98% of the time, we had to organize our PLANS thoroughly to make them work.  And because mom has Alzheimer's, she has no recollection that she has a swollen, sore wrist so she aggravates it over and over and over again by over-using it or leaning on it or being too aggressive with it.  And she has to have a thorough explanation of what happened (we have no idea) about every 4-5 minutes. 

It's hard to execute a PLAN when you have to take 2 minutes every 4 minutes to explain a story that has no hope of being remembered.  To muster the kindness it takes to tell the same story 100+ times in one day.  To know the repercussions of limited physical activity on someone who is 86 years old and try and fit some PT exercises into your already tight PLAN.  It was mind-boggling (or maybe that's just me!)

The first part of the PLAN to get tossed out is anything non-essential.  Pool time.  Sonic time.  One last trip to the park.  And that can make me a grumpy, resentful caregiver.  If I let it. Okay, fine - we'll clean the panty - it's right beside mom's room - I can straighten and explain all at the same time!

Of course, we needed a cherry on the top of our week, so we ended up needing a home health nursing visit.  Then a doctor's appointment.  A trip to the hospital to get an x-ray on mom's hand & wrist.  And most disturbing, putting mom in the car. 

Mom HATES to leave the house.  She is terrified.  It wasn't too bad going, but the stop on our way home to get my daughter measured for her cheer belt was distressing...mom fell asleep, woke up and went immediately into panic mode.  She FREAKED OUT.  I used my best stuff - right there in the parking lot of the middle school, ended up singing "You Are My Sunshine" and we got through it...I can assure you that wasn't in the PLAN!

Traditionally, I do some of my best work in a crisis...but when I am frazzled and tired and feeling a bit sorry for myself because of missing the pool with my kids...well, you know....

So, I changed the plan - I had to re-forecast, as my friend Diane reminded me today.  And we are calmer.  There was some doctor stalking to find out what was up with mom's wrist - not broken (Hallelujah!).  There was an unexpected trip to the pharmacy.  There was an extra football meeting.  And the last hurrah of fundraising for my son. 

But there was also Mina - which meant we did get a quick trip to the pool and finally, the blue slide was conquered by my daughter!  We snuck in a Sonic drink and some much-needed caffeine for me and a cherry slushie for mom. 

We make it work.  I let it make me nuts sometimes.  But we make it work.  We're family.  And family is always more important than the best laid plans of mice and men...*

*My mom always used to say that!...the mice and men part, not the family part...so bizarre these days to think of mom quoting Burns or Steinbeck or wherever she got it!






Wednesday, August 13, 2014

Anything but Routine



Today was One Word Wednesday over at my web site My Sweet Peanut.  The word for today is ROUTINE and I just couldn't quite find mine today.

I set alarms.  I made mental notes.  I had a plan.  Mom had a different idea.

It's funny that when I hear the word ROUTINE, I immediately think of my daughter dancing.  They choreograph ROUTINES for all the disciplines.  We order and bedazzle all manner of costumes to add a little expression to the ROUTINE.  She practices her "facials" in the mirror to make sure she is interpreting the music for the ROUTINE.  Her feet are in constant motion day in, day out, tapping, pointing, leaping out the steps of the ROUTINE.

She is creating muscle memory by practicing.  She is making the steps second nature so she can let go and just dance and express and be the ROUTINE.

When you have Alzheimer's, you lose your memories.  First it's names.  And words for common objects.  Then your short-term memory fades.  Eventually, you lose your muscle memory.  Even things that you've been doing for, say, 86 years...like brushing your teeth, escape you.  Especially if you think about it too much.  It's the thinking.  Or the overthinking, really.  Trying to get it perfect.  Trying to make it make sense.  Trying to give every step a name.  To attach the exact, proper, appropriate word to each piece, step, action.

Imagine the frustration of staring at something you know you are supposed to know.  To understand.  To instinctively know what to do with it.  And get stuck.  No matter how ROUTINE. 

And, then to make it worse...not being able to find the words to ASK for help.  To clarify.  Because you stopped going with the flow.  You stopped letting it be part of your morning ROUTINE.  You made it an event.  A test.  An exam.

And because you have Alzheimer's and you don't quite understand what that means and you're embarrassed to admit it, talk about it, ask for help....you turn everything into an event.  You put pressure on yourself.  You make brushing your teeth an exam.  And that makes everything harder.

And imagine you're a caregiver and you want to reassure your mom to just "go with the flow".  To smile and remind her that she does this every single morning and "she is awesome"! 

To watch the scariest (to me) part of dementia.  The forgetting of the ROUTINE things.  The last pages of the 'handbook' the doctor gave you that state clearly (and that you didn't believe could possibly happen when you read it the first time 8 years ago) that Alzheimer's can take away your memory of how to stand up.  How to walk and eat.  How to breathe.

"It's a natural as breathing".  A saying I've heard my entire life.  A saying that has been a saying forever because it's true...unless you have Alzheimer's.

I mean, BREATHING... How much more ROUTINE can you get?  "As natural as breathing!!"  And yet, Alzheimer's can take that natural tendency away.  It's terrifying.

So I push.  I set us up for success.  I maintain as strict a ROUTINE as I can. And I push some more.  And set another alarm.  And make mental notes.  And have a plan.  And wait and watch and pray and breathe...

Wednesday, August 6, 2014

DANGER ZONE

I decided to not spend too much time thinking this one through.  I had a thought (no, not the "Danger, Will Robinson!" thought I had while typing up One Word Wednesday over on my caregiver website My Sweet Peanut.  A different thought and I've decided to run with it!

Today's word prompt is DANGER and although there can be a lot of DANGER involved with caring for a loved one with Alzheimer's, I decided to share a different DANGER - the one floating around in my head this week...

The DANGER of becoming overwhelmed.  The DANGER ZONE of caregiver burnout.



I am feeling it this week.  I am certain it's because mom has been in a negative place.  Fighting the things that are best for her.  Fighting the exercise.  Fighting the memory games.  Fighting most activities (except eating - she is still really snack-y!)  And arguing with everything.

And complaining.  Constant complaining. 

She has had arthritis for as long as I can remember.  Since her early 40s.  In her hands and especially in her feet and knees.  She worked on her feet most of her life - in heels, because that's what women did "back in the day".  And it's taken it's toll. 

But lately, since she can't remember anything - even her own past - every ache and pain is brand new and she wants to talk about it.  Ask about it.  Complain about it.  Whine about it.  Moan about it.  And she has taken to making faces and mumbling under her breath...unkind faces and unkind mumbles.  It's exhausting.

And since she is fighting with everything I can think of that might help her feel better....stretching, using heat and ice, doing her therapy exercises, walking and wiggling hands and feet, drinking lots of water, sitting up a little bit straighter, moving around from place to place and seat to seat.  It's left me at my wit's end.

It's been over a year since mom moved in.  There have been a lot of challenges.  But this new 'victim mentality' is threatening my ability to be a positive carer.  And as I was telling a story to my son, during our 3-hour Mina Break today, I realized it was something my very own mother taught me early, early on.  Not just taught me - drilled into my head!

SHE is the one who had zero patience for people who acted as victims.  For people who pushed all ownership and responsibility off their own shoulders and blamed others for their lot in life.  MOM who used to lecture me for anything that even looked like laziness or complaining or whining.  I can still hear her saying "If you've got time and energy to complain about it, you've got time and energy to do something about it!" 

And I've decided that's why it's bothering me so much.  That's why I can't get past it.  That's why I am grinding my teeth more than usual and biting my tongue and counting to 10 and yoga breathing and taking a quick walk into the backyard to "take out the trash" for a breath of fresh air.  Why the mirror and pickles and all the other tricks aren't working as well as they usually do.

And although I've said and typed and written it time and time again - it is really hard to get used to the person who in body is your mom, NOT BEING your mom anymore in spirit and soul and attitude and actions.

Perhaps writing once again has helped me avert the DANGER ZONE of caregiver burnout.  It really does help to put it all down.  But I am tired.  And tired is a very DANGERous place for me to be.  It shortens the fuse.  Shreds the filter.  Hardens the tone.

Prayers would be appreciated as I work through this.  Because, like so many things with Alzheimer's - this negativity could be our new normal.  It may never go away.  Or it may stop tomorrow. 

Regardless - I made a commitment to my mom to take care of her and that doesn't mean just going through the motions.  She deserves my kindness and my patience and my love and respect and energy.  So I will try and move myself out of the DANGER ZONE every day so I can fulfill my commitment.  Wish me luck!

Wednesday, July 30, 2014

Compassion on a Rainy Day



I had already decided what I wanted to share today as part of One Word Wednesday before I got all the way out of bed this morning.  The word this week is COMPASSION.  I had a story ready to share.  And then I got up....

Today is my husband's birthday, so I had a mission - a doughnut run.  To Shipley's for the best devils food doughnuts in town (our opinion).  Candles, the happy birthday napkin, singing, breakfast in bed...the whole shebang!  I got up extra early to make it all happen and still keep mom on schedule...

...and she'd had another accident. 

My initial reaction was to put my head down...not sure if I was going to cry or scream. 

Thankfully, I looked over to see how bad it was and how it happened and I saw the sadness in her eyes.  She had no idea who had come and wet her bed.  She had no idea how it had happened or why she was wet or if she had told me or if it was time to get up or just time to go to bed...

And I remembered looking up COMPASSION online last night ... "...along with a strong desire to alleviate their suffering."  And that was exactly what my heart was telling me.

I am off-the-chart empathetic.  I can't help it.  I am a hot mess at a movie - totally invested, totally in tears or on the edge of my seat, whatever - I am a director/actor's dream audience.  I am the same way with books, commercials, YouTube videos...those Pet Rescue videos...OMG!!!  So, there is no way I can look at this sweet old woman with tears in her eyes and this look of absolute dependency on her face and not want to make it all better.

I am admittedly tired of cleaning up pee.  Even when it's so awful that it's funny.  Even when I can write about it and let it all go.  Even when I have had a good night's sleep and an empty washing machine.  I wanted to scream.  To pound my fists and stomp my feet and throw that bedding across the room.  I'm pretty sure I considered wagging my finger at mom - scolding her.  What the heck?!

She is an infant.  A puppy.  A sick old woman with the world's most awful disease who is doing the best she can.  And compassion - my desire to "make it all better" - allowed me to see that.  Allowed me to start a casual conversation about making coffee and jelly selections while I quickly removed her bedding.  Allowed me to grab a warm washcloth and towel and help her clean up while I told her a funny story about the doughnuts I bought this morning.  Allowed me to give her normal, every-morning prompts to help her dress.

The plus of Alzheimer's is even though it might be obvious to me (and most of the non-ALZ world) that something had happened since the bedding was pulled, mom didn't seem to notice.  And all of a sudden, she wasn't sad anymore.  She was asking about her schedule for today.  And oohing and ahhing over her coffee.  Just another day in the life of a caregiver.

And I felt at peace with myself.  The sheets would need to be washed whether I lost my cool or not.  That darned comforter would need to be strategically shoved into my machine with just the right amount of detergent even if I threw a fit and stomped my feet.  The bed wasn't going to make itself if I went off the deep end.

Compassion saved the day!  I was able to be an example for my kids.  A nurturer for my mom.  For heaven's sake - I had a box of doughnuts in my house...can you imagine if I had lost it - I could have polished off 5 or 6 of those babies and gone into that weird, buzzy sugar high followed by the migraine of all migraines if I had not taken time to let compassion win.

So, maybe I'll tell my "planned" story another day.  For today - I just wanted to write a thank you note to compassion for saving my day!

Wednesday, July 23, 2014

Faith in the middle of a pile of laundry...


Today my goal was going to be "patience".  Yesterday I struggled to find patience - mom was in a strange place and I found it terribly annoying.  I didn't lose my temper, but I was curt.  I was more stern than I like to be when I know it's not her fault.  I also got some bad news from the nurse yesterday - mom's INR is high again.  Not "go straight to the ER" high, but high enough to have to contact her doctor and make some dosage changes.  And after the last few months and incidents - it makes me nervous.  And for me, nervous = edgy.

So instead of being patient, I came home to another wet bed.  And not just a wet bed, a "throw back the covers AND the moisture barrier" wet bed....all the way to the mattress wet.  And it's the 3rd wet bed in the past week and I found patience impossible to channel.  Truthfully, I couldn't even spell it for about 10 minutes.

And - I had 2 girls to get to ballet intensive and lunches to pack and breakfast to make and a boy to pick up and now laundry to do...and it's a Mina day, so I need to be ready to get my 3 hours of respite by 11:30!!!  So, since patience was out of reach - I decided to grab onto FAITH.

There is a lesson is all this.  I believe it.  There is a reason for all this.  I believe it.  I was given 2 beautiful children to teach.  I believe it.  Mom is unable to be responsible or learn 'any better'.  I know it all the way down to my toes.  And God is watching.  Some days I think He's watching out for me.  Some days I think He is testing me.  And some days I am guessing He is rolling His eyes at me.

C'mon Lisa!

There are more blessings in my new life than I ever imagined.  I have a confidence in my abilities that are directly because of this time caring for my mom.  I saw the face of God in the sky this morning and I knew it.  And just like my Daddy used to tell me after a tough day at school or at the motel - "Have a little faith.  It makes everything possible.  But God never said it would be easy!  Cuz in the hard - that's where you find out what you are made of!"

Words of wisdom.

I used to think people filled with FAITH were over-the-top happy.  They rejoiced at the drop of a hat.  And I bet those people do exist.  I see them all the time at the grocery and at the gym.  They have perfectly highlighted trendy haircuts.  They are tan.  They have French mani/pedis.  They have coordinated, made-to-go-out-in-public workout clothes.  Their dentist whitens their teeth so their faith smiles really pop!  They are 'blessed', no matter what the question.  They beam and glow and praise Jesus and smile when they are up to their elbows in excrement.  Sadly, I do not have that kind of faith.

I have the 'hand on my shoulder, everything's going to be alright' kind of FAITH.  I have the 'God will still love me even if I'm wearing my husband's t-shirt and day-old yoga pants' kind of faith.  I smile, but more at myself when I realize that I am overreacting.  I praise, but silently and with a bit of shame at the fact that I may have just lost my cool or misplaced my faith for a minute.  I rarely glow - except for that nice way southern women talk about women like me who sweat in July!  I do beam - but usually in a more private moment, because my relationship with God and with faith is very personal.  And until I started writing - personal meant "keep it to yourself".  

All I know is I believe.  I believe in the inherent good of all mankind.  I believe in a God who understands and is patient and kind and tolerant and far more open-minded that many of my more traditional Christian friends.  I believe.  And when you boil it all down - that's what faith really is at it's core.

And faith gets me through a lot of trials that come with being a caregiver.  And a momma.  And a wife.  And a neighbor.  And a driver on any freeway in the DFW metroplex!

It's easier to be kind when you believe in a God who's got your back.  A God who is always there, even when you forget and try and forge on all alone (ha!)  The issues and challenges and wet bedding and constant questioning and whatever else the world throws at me will still be there.  And it will still be frustrating and hard and a little bit icky on some days...but my FAITH is always there to boost me up.

And even if you call it something else - I hope you have something you believe in that makes your life fuller and brighter and safer.  Something that lets you know everything is going to be alright.

Linking up on my website My Sweet Peanut  for One Word Wednesday.  As you can probably tell - today's prompt is FAITH.  Head on over and tell me your story!

Wednesday, July 16, 2014

Alzheimer's is a Safety Stealer



So, today we are writing about SAFETY at One Word Wednesday over at my web site My Sweet Peanut.

We moved mom in a hurry.  She got sick, had a stroke (which she recovered from beautifully - physically, at least) and could no longer live independently.  We called in a favor from one of my husband's friends with a truck, grabbed some boxes from his work, made one quick trip to Target, put our head's down and had it done in 2 days.

Safety was an afterthought.  I forget sometimes how quickly mom's memory and abilities can deteriorate after an illness.  I was thinking the mom that would be moving in was the mom that had just been at our house the previous Sunday for brunch.

It only took one day to realize the need for a few additional safety precautions.  Moving the knives.  Taking out the rugs.  Taking out all tubes and bottles of everything from the entire downstairs area.  Putting a safety latch on the pantry door.   In those 5 short days in the hospital, she could no longer recognize the difference between a tube of toothpaste and a tube of medication or ointment (isn't that an awful word?).  She refused to open a drawer for silverware, so she might grab the biggest, sharpest knife to cut an orange or make a peanut butter and jelly sandwich.  And she was using crazy, wild, forceful movements to slice - terrifying!  She would reach for things that looked yummy that were much too high for her to reach - and I can tell you mom on her tippy-toes is not a good idea!  Her balance was impaired.  Her strength was low.  She tired easily.  Our rugs might as well have been hurdles.

But all of that was manageable.  I could watch her, see what needed to be changed and fix it. 

And then the Alzheimer's really started to take it's toll on her common sense.  Her long term memory.  Her ability to know the difference between a logical response and a "What the HECK!?" response.

She started opening the door to whomever knocked or rang the bell.  Even after we put a sign up.  The neighbor kids.  The UPS man. Our mail carrier.  Salesmen.  And last week, the kind of scary guy who puts the door hanging flyers on our neighborhood homes really early in the morning.  He didn't even knock - she just saw him walking up the drive and went to open the door!!!  In her nightgown!!!

I tried adding locks up high...did I mention that my mother is bull-headed?  And that she will willingly go up on tippy-toe?  Bad idea.  And not the safe solution I was needing.  I'm not sure what we are going to do - I guess have our home re-keyed and add key only locks outside and INSIDE!

She's also started roaming.  Not out front yet.  But out back.  And there is a tiny step down to get out to our back patio.  Which mom is more than capable of doing - but I would feel better if I were there to assist.  Or catch her.  Or pick her up. 

I'm a nervous wreck every time I run upstairs to grab laundry or make a bed or take a shower.  Not that she'll let me these days...

And that's our newest SAFETY issue.  Unless mom can see me with her eyes.  She is terrified.  She calls out.  Then she screams out.  And on occasion, she wails.  It is heartwrenching. 

Alzheimer's has taken away her ability to know that I have just left the room.  Or that Ill be Right Back.  Or where my voice is coming from.  Or where she is.  Her ability to feel SAFE.

Can you imagine waking up from a nap or a daydream and being in what you think of as a strange place?  A stranger's house?  Having no idea where you are?  Why you are alone?  Where everyone has gone?  How old you are?  Who you are?  Not recognizing the furniture or the scenery or your own clothes....How could you possibly feel safe?

Alzheimer's has stolen a lot of things from this family, but stealing mom's independence and her capacity to feel safe and sound has been the worst thing so far.

Wednesday, July 9, 2014

Weird!



Today is Wednesday - One Word Wednesday, to be exact.  And today's prompt word is WEIRD!

I love weird.  And it's a good thing! Because since mom brought her Alzheimer's to live with us, weird is a constant companion.

And these days "hidden treasures" is our new WEIRD.

Unfortunately (as with many ALZ patients) mom is distrusting of everyone...even me.  And she hoards things.  So, when she hoards things or thinks someone is trying to steal something from her - she hides whatever it might be!  And she hides these things in places that probably make sense to her.  Of course she promptly forgets where she has hidden things.  That she has hidden things.  What she might have hidden.  Life is like one big scavenger hunt!

Mom has very few places to hide things in her room - or so I thought.  She has her basket.  She has her television stand that has a small cabinet below the receiver shelf and she has this penny bank that looks like a dachshund that mom bought with her first grown-up paycheck 59 years ago.

We mastered looking in the basket long ago and although I thought the tv stand cupboard would be too low to the ground...I check it every now and then.  I've found kleenex - both clean and used in there - so she can get down lower than I imagined when I'm not looking (can I tell you how nervous that makes me???).

I've also found dirty underthings in the tv cabinet, a stack of papers my daughter was using to play teacher and a strawberry.  Poor strawberry.  It did not fare well in the tv cabinet for however many days.  And the cabinet has a pale red reminder on the shelf that the strawberry overstayed it's welcome.

I can always tell when she's putting things in the penny bank - it makes a lot of noise when she takes the top on or off.  Besides - these days mom thinks it is a real dog most of the time, so she wouldn't dream of taking its head off.  She might try and feed it an old strawberry, but I don't believe, animal lover that she is, that she would try and pry its head off.

What I'm learning is that mom can find so many other, non-traditional places to hide things.  Under cushions.  In pockets.  Down the sleeves of her robe.  Inside her pillow case.  Under the chair.  And inside her slippers. 

Her favorite things to hide are food and coins.  The food either gets discovered by Sophie, our dog, and eaten, or it starts to smell and I get to find it and clean up.  The coins disappear into cushions and pockets and all sorts of other tiny places.  When I clean on Mondays, I usually end up with a few extra pennies to put in our coin jar. 

But lately, I found a key - no one has any idea where it came from - hidden in her slippers.  I found my driver's license behind the big cushion of her chair...and I was frantic trying to find it.  And she was in there when I found it and she was mad!  She swore up and down that she was me and that it "was her driver's license" and I'd "better give it back".

But the weirdest thing - so far - that I have found is a collection of things stuffed into the sleeve of her blue fluffy robe that she doesn't like to wear anymore.  (I have no idea why - it is so warm and soft and pretty)  She was cold one night and my daughter was having a sleepover, so the girls had all the extra blankets in use on the family room floor.  So I grabbed her robe off its hook and went to lay it over her when I felt something out of place.

In that sleeve was one Nike Elite sock - black with white stripes, a pair of my husband's boxer briefs - navy with gray trim, a folder up, unopened letter addressed to me trying to get me to switch our cable provider and a paper towel full of grapes.  Thankfully, the grapes appeared to be pretty fresh.

I wonder what made her choose those things to hide?  I wonder where they came from and when she finched them?  I wonder how she got them past me?  I wonder how she remembered that her robe sleeve was her preferred hiding place?  I wonder how she balanced her treasures in there so she could add the second and third and fourth?  I wonder?  I wonder?  I wonder?

WEIRD?  Right?

Wednesday, July 2, 2014

Lack of Understanding



Today is Wednesday.  I remembered!  And my kids pulled the word prompt out of the jar so I could prepare for One Word Wednesday on my little caregiving website.  And I felt a bit overwhelmed. 

This week's word is UNDERSTANDING.  And I am going to have to share this terrible, awful thing that is going on around our home since mom got back from rehab.

Every caregiver knows that each stay in rehab or the hospital takes a big chunk of their loved one away and never returns it.  With Alzheimer's, it immediately drops the plateau.  Their ability to remember or perform activities.  Each illness is followed by a new, lower baseline.

And for mom, each stay alters her personality.  And she rarely goes back to what was her "norm" before she got sick.  It becomes something new for us to deal with and live with and cope with and respond to.

This time, mom has become a victim.  One of the "poor me" people (that's what Daddy used to call me when I was feeling sorry for myself).  No one wants to help her (even if we've just tried).  No one listens to her (even if we've just spent 10 minutes answering the same question and finally had to walk away before dinner burns up or to turn off the water before the sink overflows).  No one cares about her (and that is 2000 words for another time).

All of that is hurtful, but I can deal with it.  I know how to talk myself through hurtful words most of the time.  I don't love it and I can promise you I am not always the dalai lama and have muttered some pretty ugly things under my breath, but I can handle it.

But she is now whimpering and crying a lot about her inability to remember things.  She doesn't UNDERSTAND.  And she no longer has the faculties to understand my explanations.  She can no longer remember the question she has asked by the time I have offered her the answer.  It is a vicious circle.  And it is almost unbearable.

To watch your mother reduced to whimpering.  To see such frustration that it brings her to tears and those deep sobs that shake her entire body.  To see, after all these years of trying to pretend she was "fine", that she knows she is not.  It is tearing me up inside.

"I don't understand why this is happening to me!" she will cry out.  "Why does God have to do this to me...I don't UNDERSTAND!".   "It's not a very nice thing to have happen to you.  Is it?" 

I used to tell her she has Alzheimer's.  But she fought so hard to ignore her reality early in her disease, that she never bothered to research or accept what Alzheimer's is.  And now it's impossible for her to learn anything new - even if she is living in the middle of it every day.

So then I said she had a brain disease.  I thought that sounded worse, but at least for a while, she could understand.  But after this last stint away from home.  That no longer soothes her.  Those words don't bring her any understanding.

Now I just say, I don't know.  I tell her everyone has a different way of aging.  Some people lose their ability to walk and have to be in a wheelchair.  And some people get cancer and lose their hair.  And some people lose their sight or their hearing.  And some people forget things. 

This is working for now.  It calms her down when she is agitated because she can't remember a name or a word or what her mother looked like.  It makes her less weepy.  It makes her feel less different.  It makes her less embarrassed.  It helps her stop crying.  For now, it brings her some understanding.  And for now, that is all I can ask for.

Wednesday, June 25, 2014

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)


Wednesday, June 18, 2014

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....



Wednesday, June 11, 2014

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!

Wednesday, June 4, 2014

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.

Wednesday, May 28, 2014

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. 



Wednesday, May 14, 2014

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. 

Wednesday, May 7, 2014

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!








Wednesday, April 30, 2014

Becca's Take on Random, One Word Wednesday

My dear friend Becca doesn't blog - she has both her hands full, but always takes time to stop by on Wednesday to share her story of caring for "the mom".  I decided to post her comments so more of you can meet her - she is joy all wrapped up in a beautiful person.

Here is her take on Random...

Random – to me is anything and everything. It amazes me the random things the mom has stored away in her long term memory bank. Mom can hardly carry on a conversation with you but she is an amazing 42 player. She was a professional banker back in the day and was really good with numbers. Not sure if that has anything to do with it or not.

She has a lot of memories from her childhood and we can get out old photos and she can tell me who is in the photos and where they were in the pics. You can show her current pics and she has no idea. It’s kinda scary how all of that works. Short term memory seems to be non-existent.

When visiting the mom in rehab daily, other residents try to talk to her. She knows many of them from the past but doesn’t want to have much to do with them even though she use to be the social butterfly.

Mom asks why she is in a nursing home with all these old people? Mind you mom is 82 and doesn’t realize she is like many of them. Her decline is frightening to me because her desire to get up and go has diminished. Sleeping the day away seems to be the routine except for the twice a day therapy.

Each day I try to bring her little dog Chloe to see her. It is strange to me and seems unfair that her dog and possessions are more important to her than the people that love her. Mom has always been all about “the stuff”.

Yesterday, I bought the mom two new lounge dresses to wear thinking she might get up out of bed and get out of her room. It probably won’t make any difference but she is like a child when she gets a present.

Our conversation was extremely one sided and she asked at least 10 times where she was and when she was coming home. Rehab does not think she is safe enough to leave the facility yet. They told me she races her walker and forgets how to use the brakes. Falling and breaking a hip is a huge concern.

When they tell her to slow down and take her time she gets distracted and starts looking into the other resident’s rooms stopping at each one to see what they are doing. Extremes must be part of it.

Well today is a new day that the Lord has made. Let’s see what He has in store for us. Remember to pray for the people affected by the tornado and mass destruction because they are much worse off than we are. Have a blessed day. Love yalls!

Random Acts of Alzheimer's

Another week, another Wednesday, another word.

This week's One Word Wednesday prompt is RANDOM and I am becoming quite an expert on that!

I completely underestimated the effects of Alzheimer's on mom.  I knew about the short term memory loss.  I knew about the loss of names and faces.  But I was not expecting how RANDOM mom's actions could be.  How the brain can take something you have done every day for the past 75+ year and turn it around and upside down and have it come out in the most unexpected way is baffling to me.

It's a beautiful afternoon and the sun is shining.  That means mom has taken her favorite seat on the couch by the big front windows to enjoy the day.  I join her in the living room and sit down at the computer to spend some time in blogland.  My husband is at work, the kids are in school - mom is heading in the direction of a nap.

All the while, Sophie, our rescue beast, is stretched out long in front of the window right by mom's feet.  She loves looking out the window more than mom.  Besides, it's her job.  She fancies herself a watchdog.
She's more of a sunshine dog than a watch dog


Well, something caught Sophie's eye and she decided to bark.  Goodbye nap.  Goodbye uneventful afternoon.  Mom was ready to chat! 

Mom always opens every conversation with "Is there anything we're supposed to do today?"  It's a slippery slope, because how you answer and how she hears determines how many times she will ask it.  She can grab on to this question with the strength of 10 men and not let it go.

On this particular day, I believe I answered with "Nothing special, just enjoying the sunshine."  And out of nowhere, mom launched into an argument based entirely on information she had been given by our dog in an earlier conversation.  And nothing about this argument seemed strange to mom.  Not even the talking dog.

I tried to fluff it off - didn't want to make her feel silly for thinking Sophie had been talking to her.  That didn't work.  Tried to point blank tell her that dogs can't talk - even our beautiful Sophie, who is quite brilliant. 

"I see that you have theatre tickets for this evening, m'lady"




Nothing worked.  She was convinced that Sophie had told her she had an appointment with her doctor.  She had details - the time, how soon we needed to leave.  And that wasn't all.  They talked about what dress she should wear to see Lisa's play this evening.  I'm Lisa and I can assure you I am not doing any theater these days.  (Aside from my brilliant performances pretending to be excited about answering the same question 30 times a day)

Nothing swayed her.  She was up and looking for her "pocketbook" (she hasn't carried a purse since she got her walker) so she would be ready to leave and a phone so she could call me (because everyone here is "stupid and lazy").  At one point she looked right at Sophie and tried to get her to tell me what they had talked about.  I think Sophie wagged her tail and laid back down.

And then it stopped.  Just like that. 

Five minutes later she asked me "Is there anything we're supposed to do today?" and without hesitation, I said "NO."   I didn't want to muddy the water and get her all upset again.  I guess it worked because she smiled, said thank you and closed her eyes for a nap.

Just one of the more RANDOM acts of Alzheimer's.

Wednesday, April 23, 2014

One Word Wednesday: Always

Some words comfort.  Some excite.  Some words bring back memories.  And some words strike fear straight into my heart.

And some words do it ALL.



ALWAYS is one of those words for me.  There can be a lot of pressure in ALWAYS.  A lot of commitment too.  When a bad thing is for ALWAYS it takes the breath away. 

All the very smart, self improvement people and lots of other evolved souls will tell you and try and teach you to "live in the moment".  I find it nearly impossible.  I meditate - not often enough, but in short bursts to calm myself and I am horrible.  My mind wanders.  My list making tendencies kick in.  My eyes peek.  My toes tap.  "The moment" is elusive.

Guess what?  When you have advanced stage Alzheimer's - all you have is "the moment".  You have no idea what has happened.  You have no idea what is supposed to or going to happen.  It's supposed to be Nirvana, right?

What I"ve learned lately is that CHOOSING to live in the moment and having a disease FORCE you to live in the moment is different.  Choosing comes with discipline and thought and practice and peace.  Alzheimer's takes all of that away from you.  The choice.  The intent. 

It also creates a weird flashing in mom's brain.  Flashes of memories, but just bits and pieces most of the time.  No whole stories.  Just a word or a place or a thought she can't capture. 

Alzheimer's steals your ALWAYS.

Mom has no idea how old she is.  No idea where she is.  She asks for people long dead.  She calls a blanket a newspaper.  She asks if her nose is on right.  I show her pictures and she has no stories to go along with them.

I read that her short term memory would disappear.  I understood that she might call me a name from her past.  I was not prepared for her to forget herself.  I was not prepared for her to be cold, then cover herself with a blanket and ask ME if she was warmer.

I didn't expect her to get too weak to walk and not be able to remember that.

I thought I'd ask her questions and she'd tell me stories about her past.  Her loves.  Her friends.  Her family.  Her first kiss.  Her recipe for pecan pie.  But it's all gone.  I asked her today what she would want to see if we went back to her hometown and she smiled and me and it was clear - she had no idea what I was talking about. 

These days we can talk about the weather.  I can tell her the names of the hosts of the Today show as often as she can ask.  I can tell her why her back is hurting.  I can sing "You are My Sunshine" with her as we exercise.  But no stories.  No memories.  No connection.  No always.

Wednesday, April 16, 2014

One Word Wednesday: ESCAPE

I've always loved the idea of escaping - even before I was a full time caregiver.  A flight somewhere, a beach, a good book, a beverage with a kick!  I excel at escaping!

I've really had to rethink escaping these days.  I don't have siblings.  I don't have money.  There are few (really no!) resources for Alzheimer's patients and their carers.  But sanity is a must in the caregiving game!

Therefore, escape is necessary.

My favorite place, time and activity that is just for me (which means it qualifies as an escape) is lap swimming at 5am.  How bizarre that setting an alarm for 4:25am, putting on a swimsuit in front of strangers and pushing myself to the cardio limit would be an escape? 

But it is.  No one can bother you when you have your face in the water.  They can't start a conversation.  They can't ask you to get them anything.  They may put their legs in your lane to show that they'd like to share, but I don't even have to speak to acknowledge them.  I just have to raise my head slightly at the end, nod and scootch to one side.  I don't even have to smile if I don't want to. 

I don't even count laps anymore.  I swim for 40 minutes.  That way I don't have to focus on or be responsible for anything.  I can daydream.  I can create a story as to why there is a hairband on the bottom of the pool - who did it belong to?  Who were they at the pool with?  How old are they?  What color was their suit?  Did they stop for a smoothie on their way out?

I also get to tick off the exercise box that all of us who fear Alzheimer's need to tick off every day.  Maria Shriver's special series on Alzheimer's said 20 minutes of cardio a day might just stave off the effects of Alzheimer's for a day....I can work with that!

I get to see people that aren't my family.  I gave them all nicknames so I don't have to bother learning their real names - Super Swimmer, Murph Trunks swimmer, Long Tall swimmer, Face Mask swimmer, Gray Back swimmer (sorry for that mental picture, ladies), WWE swimmer, Think Pink swimmer, the hateful couple swimmers, Crossman swimmer...and Mr. Suspenders - he water walks, but he's one of us.  I don't have to talk to them, but I can.  I don't have to worry about them, but I do if they're not there for a few days.  I don't have to feed them or dress them or do their laundry and ... cherry on the top of these swimmers.... I don't have to answer any questions for them!  Not even once!

I have other escapes in my day - I watch Jimmy Fallon while I make dinner and I laugh!  I take 5-10 minutes for myself every morning after the kids are dropped off for school and mom has had her breakfast and the beds are made to just meditate and stretch.  I sneak upstairs for this, so I have to be careful not to yoga-breathe myself into a nap!  I pray.  I blog.  I put headphones on at least once a day and take at least a one-song vacation.  Something delicious - Al Jarreau, Justin Timberlake, James Taylor, Earth, Wind and Fire, Big Daddy Weave, Toby Mac, Christina, Michael Buble ....ahhhhh ...musical escape....

I've also been known to sneak my face into the freezer with a spoon for some ice cream therapy or run through McDonald's to have a near-religious experience with a fountain Coke Zero and there have been a couple of 2am tiptoes to the fridge for a Redd's Apple Ale and a game of 2048 on the computer before I try and go back to sleep....do any other caregivers find sleep elusive???  Or is it just my age?

And then there's Target...my great escape.  2 hours alone at Target without a list to speak of....is it just too embarrassing to admit that Target is now my beach.

So, there you have it - my many ways to escape!

Tuesday, April 1, 2014

One Word Wednesday: Gratitude



Thank you Ann Voskamp for writing One Thousand Gifts.  And thank you Nook for making it a "Deal of the Day" on just the right day.  And thank you evil recumbent bike for giving me 45 minutes with nothing else to do but plow through the heart-wrenching first chapter and get me to the blessing before I gave up on the book.

Thank you. 

The simplest of phrases.  The biggest of life-changers.

Learning to seek out reasons to be thankful.  To write down and define and photograph and share all the things I am thankful for.  To take the time to look deeply at situations and find the grace that may be hidden way, way down inside.  It has made me a better mother.  A better wife.  A better caregiver.

Don't get me wrong - I am so far from mastering the art of living thankfully!  I fall down and grumble and feel sorry for myself often.  And then I get back up, take a deep breath and add something to my list of 1000 gifts.  I am surprised most days at how simple it is to find something to add...

Fresh blueberries.  A robin at the bird feeder.  The big Texas sky.  My daughter singing.  My son shooting baskets in the backyard.  Billy Joel and Jimmy Fallon's doo-wap duet on the Tonight Show.  Belly laughs.  That delightful canned whipped cream!

Even on the bad days with mom - days when she is paranoid (the worst days for us) - I find gratitude in being there for her.  In the way she still knows - even though she doesn't remember anything else - that I am someone who will never let anything bad happen to her.

I choose to be thankful for things that could make me nuts - like our morning routine.  I choose to focus on what is good about staying on routine.  To celebrate the things mom gets right because we have a routine.  I choose to NOT resent routine.  Resentment would spoil the morning and leave no room for tiny celebrations.  Resentment would sour the taste of breakfast and make conversation strained.

Thank you has become one of my go-to prayers in the hard times.  Along about the 44th time of telling mom what day it is, it would be easy to be resentful.  But if I break it down with a grateful heart - I realize I can be thankful that I still know what day it is.  I can still comprehend and answer simple questions.  I still have my mom alive to pester me.  I have a strong, loud voice that she can hear better than a lot of other voices. 

Today, in the midst of 3 piles of laundry that needed to be done, meals that needed to be planned and prepared, kids that needed picked up, dropped off, chauffeured  here and there, a house that needs some cleaning and bills that always need to be paid...I got to sit and hold my mom's hand so she could relax and stop shaking.  I got to brush her hair and stand beside her for moral support while she did her physical therapy. 

Caregiving is a gift.  It may not be the fast, cherry red convertible that I dreamed of, but it's a reliable sedan that gets me where I need to be.  I just need to remember that.  And say thank you!



Tuesday, March 25, 2014

One Word Wednesday: Nurture

I have always loved to write, to blog, to capture life in pictures and stories.  But usually just for me and for my family. 

And then I found Lisa-Jo Baker, through Ann Voskamp's blog and I started to participate in Five Minute Fridays.  And I found a small community of bloggers and storytellers who were inspirational and funny and ironic and wise and faithful. 

I was so inspired that I am going to try my hand at a link up for others who are caregivers for a loved one.  I want to create a community where we can share our stories.

I moved my blog over to a wordpress site, because it was easier to manipulate and might be easier for others to find...I guess we'll see. 

The link will be up and running in 2 hours (midnight Central Time Zone) and I have no idea if it will even work correctly (although I am hopeful!)

If you have a story to share - here is a link to the post.  I would be honored to have your stories as part of this new weekly link up.

One Word Wednesday: Nurture

This week's word is NURTURE!