From Goldilocks to Camel…the progression of Alzhiemer’s in my house

Last year – almost to the week – I wrote a post about how if I had to give my mom a nickname it would be Goldilocks.  Everything was “too” – too hot, too cold, too sweet, too spicy…you know what I mean – nothing was just right!

Well, today I had to go hide in the laundry room (and actually got a bunch of socks matched, so it wasn’t a total waste!) because my mom was on a bit of a roll.  It didn’t matter what the subject, the question, the event – she had something to say about it!  If I’m being honest, a LOT of somethings to say about it!

And as I was fetching socks out of my dryer, all I could think of was the old “I’d walk a mile for a Camel” slogan and then I giggled – because really, I had just walked 50 feet, in a sense, because of a Camel.  The new unfiltered mom, just like the old unfiltered Camel cigarettes.  I’ve never been a smoker, but that slogan, that trait, just stuck with me…no idea why.  But hiding in my laundry room to avoid her unfiltered commentary, it cracked me up.

Somewhere in these past 8 years, mom has lost her filter.  She says whatever she wants to.  Whenever she wants to.  I’m sure it was more natural for my mom to abandon that filter than perhaps for others – she has always prided herself for “speaking her mind”.   Today, however, I’m not sure it has anything to do with pride and I am certain it has very little to do with the traditional mind.

Today she was down-right mad about the 1, 2, 3, 4, FIVE cars parked outside our home – 1 in my driveway, 2 in the neighbor’s driveway, 1 in front of their house and 1 just down the street.  She thought that was ridiculous.  And then somewhere in her Alzheimer’s mind – she got caught up in the their colors and what that meant about the people who owned them (I’ve never been sorrier to own a red car!) and 4 minutes in, she went on a rage about why she isn’t allowed to have a car anymore!

It got heated!  At first I tried to interject pleasantries and explanations and then to change the subject.  NOPE.  Not having any of that.  No thank you!

So far, she’s been fired up about food and how little she gets to eat (surprised she could get the words out with her mouth full of Oreos!), the cars, a teacher she had who snapped the waistband of her skirt while she was teaching, why everyone went away and left her here with “HERRRRR” – that’s me!   And that was it…

I broke the cardinal rule and took it personally and jumped in to defend myself and to “reason” with her….HA!  I know better!  I lasted 3 minutes in the ring with my little 86-year-old mother.  I tapped out.  I knew this wasn’t real world stuff.  It was ugly Alzheimer’s stuff.  And it would do far more damage than good to argue or even to sit and listen anymore.  It was then that I had to make my getaway to the sock-folding sanctuary known as my laundry room.  Mom can’t get into my laundry room.  The path is too narrow for her walker….aren’t I mean?

But I had to go.  Because now that she is all-the-way gone memory wise, she not only says whatever she wants…she says whatever she is feeling.  And let’s just say, she is not a big fan of anyone who “works in this place” (that’s me and my family) right now.

I know she is still adjusting to the whole Back-To-School thing, but there are just some things you never, ever want to hear your mom say.   Ever!

So in just under a year, mom has gone from being “Goldilocks” to “Joe Camel”…not exactly a Smooth Character, but definitely unfiltered!

I suppose it’s wrong to trivialize it or make light of it or to share our dirty laundry in a public forum like this…BUT…that’s why I blog.  To get it out.  To put it in perspective.  To realize I am surrounded by others who have or are going through similar things.

So I typed it.  And now I have a way to get through the next unfiltered tirade with a smile!  That and maybe a quick trip to fold socks in my laundry room!

One Word Wednesday – WILLING

Another week in the life of this caregiver.  A tough week, but a special week as well.  My kids went back to school on Monday and there is a giant hole in my day.  Right now it’s being filled with mom’s anxiety over the change she doesn’t understand.  But soon enough, it will be empty.  No lazy, sleepy mornings waking them up after mom is all settled in for her day.  No more teamwork projects to finish laundry or grocery shopping or yard work.  No hysterical laughter from the other room and a “Mom!  Momma?!  You gotta come see this!” over a funny YouTube video of puppies or babies or sporting events.

And another Wednesday.  I had the kids pull this as soon as they got home from school.  We are “planning” a family evening (last week’s word was PLAN – you can read my take on it here.) so, I’m getting all my ducks in a row in hopes of actually eating a sit-down meal and having this decadent dessert a friend of mine told me about!

So this week, Peanut reached her hand into the jar and pulled out WILLING.

“Ready, eager or prepared to do something.”  That’s how it’s defined.  And that’s what you have to be if you want to survive being a caregiver (in my opinion).

But I have days where I doubt my WILLINGness.  Days where I wonder if I’m becoming less WILLING and therefore less capable.  Days where the details of the caring cloud the overriding objective of my choices and our new life with Alzheimer’s.

Daddy used to say “Good things come to those who wait.  Great things come to those who are WILLING to get up and do it themselves!”  And I am seeing that play out every day.

There are difficult days, like yesterday, when I have to do things that I’d rather not do.  When I have to clean up things I’d rather not clean up.  And when that happens, my mom gets really defensive.  That means I have to deal with behavior that I’d rather not deal with.  And dodge statements and remarks I’d rather not hear.  It tests my WILL and my WILLINGNESS.

But I know that we are doing what is best for mom – so those are relatively ‘good’ days.

There are days when the sun is just the right amount of shiny and the snacks are just the right amount of sweet and the kids are just the right amount of quiet and the dog is just the right amount of fluffy and I am just the right amount of patient.  Those days are easy, I am more than WILLING and those days are ‘great’.

Then there are the ‘new normal’ days where I still have to be on duty as a caregiver 99% of the day.  The questions are endless and sometimes pointless (to me, not to mom).  The exhaustion is unmistakable.  The thanklessness is constant.  My patience is tested.  The disease is in my face.  And my certainty wobbles a little.  Those are the days when my WILLINGNESS decides ‘good’ or ‘great’.

Remembering that this is my choice.  Having faith that God has a plan for me.  Knowing that none of this is mom’s fault.  Celebrating our blessings instead of bemoaning my troubles.  All these things give me a more WILLING heart.  Make me a more WILLING caregiver.  Reminds me of the privilege of taking care of someone who genuinely needs me.   How can I not be WILLING to do whatever it takes?

What is the first thing that pops in your head when you see the word WILLING?  LInk up below and share your thoughts, stories or suggestions – I would love to hear from you!

 

Avoiding Alzheimer’s – Why yes! My Top 10

Another Tuesday and another Top 10 from my ALZ world.  I’ve been thinking about this a lot lately – I think it’s because mom has taken another step down.  I watch the disease do things that seem impossible.  Unbelievable.  Right out of a sci-fi movie!

And I am scared.  Not completely overwhelmed or paralyzed by it, but scared.  Afraid every time I forget a name or misplace my keys.  Scared when I hear a story that I was a part of and don’t remember the details.  Scared that I am going to have Alzheimer’s and my beautiful children will be left to care for me…

So, every day I do things to try and fight the ALZ beast.  Here’s my Top 10:

  1. Swim laps and walk…rumor has it that moderate exercise is a great deterrent for ALZ
  2. Eat blueberries every day – they are included on most every “super-food” list, so I eat them!
  3. Play a memory game ever day or two.  I loved this game as a kid – you had all the card pairs turned down on a table and you had to find the matches.  I have that on my computer now!
  4. Memorize a quote or poem or Bible verse every week
  5. Try and learn a new name or two every week – at the Rec Center where I swim or at school or at my local market.  And then use them, store them in my brain and fire brain cells!
  6. Drink red wine or purple 100% juice.  I love the Welch’s Lite Concord grape juice…I give it to mom too, even though it’s probably too late!
  7. Take folic acid.  Not sure if anything is proven, but I figure until they tell me why I shouldn’t take it – I’m taking it!
  8. Eat some Omega-3- rich fish.  I don’t love it and I rarely cook it, but I try when I go out to have salmon or tuna … unless there is a cheeseburger with my name on it!
  9. Stay social.  It would be so easy to become a hermit as a caregiver to someone who is shut in, but I chat, text, IM, call my friends. I make time to catch up with neighbors and my fellow swimmers and the other parents at my kids’ schools
  10. Pray and pray

Not exactly the stuff of medical journals, but I don’t want to be passive about this.  I want my kids to see me doing all that I can to stay healthy for them, for myself and for our family.

That’s my Top 10 List to try and avoid Alzheimer’s…what kinds of things are you doing?

For the record…I am NOT a doctor.  I have ZERO medical training.  I read what and when I can.  I do what I feel is best for me, but would never dream of telling you what’s best for you.  Please don’t consider me an expert…I am just sharing because I think dialog and sharing are so important.  This is just my check list, because I have to do something!

 

Just Asking for Trouble…or am I Wicked Smart?

Today is the first day of school for my kids…and you know that means a big change for mom.  Don’t get me wrong, I know it’s a big change for them, but they can prepare.  They can remember.  They can make a checklist.  They can even roll their eyes at MY checklist!

Not so much for mom.  She has no idea what is different.  But she was not happy about all the action last night and this morning.  The packing, checking, unpacking, repacking (all with very loud commentary by my borderline ocd daughter) made her pace and mumble.  The lunch/snack assembly line brought out mom’s nasty, deficit-mentality side.

Some of you have read that she is crazy-snacky these days.  Eats all the time.  Can’t gain a pound, but eats all the time.  Well, add to that a kitchen island full of meats and cheeses and pickles and cookies and grapes and carrots and strawberries and chips…that’s a recipe for nasty right there!  She must have walked by 15 times in the 30 minutes we were assembling, portioning and packing.  We gave her grapes, a cookie, a piece of cheese and another cookie (she wanted no part of the carrots or radishes!), but she continued to walk by, stopping to lament the fact that there was all this good food and none for her….poor her…

Then this morning – there were lunches to finish packing (have to quietly take the cold things and ice packs out to finish the lunches without waking mom.  Not to worry – she was up and soaked through again (3rd time this week…I am losing my mind!)  So, at least that took the pressure off being super-quiet.  But it did confuse her.  All summer long, it’s been just mom and me in the morning.

Needless to say, she is a humming, muttering, pacing, napping, but not really napping hot mess.  So, I might as well have her new hospital bed delivered today, right?

The giant empty space is almost more than she can handle.  She can’t even finish the question that she has asked 10+ times.  I keep trying to bring it up in conversation when I catch her looking over there.  And I kept reminding her as my husband and I were taking the old bed to the garage and as I was sweeping the floors….but it’s just too much.  She cannot remember.  I can’t say it enough times.  I can write it down – she won’t read the note.  The signs I have tried to hang up, are ignored.

And I’ll be honest.  I thought about this two ways…would adding the hospital bed be way too much to pile onto the first day of school?…. OR …  would it be best to get it all out of the way on one day and begin the healing process asap?

I like to think I was wicked smart about this – two birds with one stone and all.  But man, I feel so bad for her right now.  She has gone into her “have we had lunch, I’d better put on more lipstick” place.  Maybe once the bed is here and made up and the kids are home we will be able to find some peace….maybe!  Until then….dee-dee-dee, dah-dah-dah…have we had lunch yet?…dah-dee-dee…

Fast forward 6 hours.  The bed is in, but it looks different.  The kids are home, but they are different.  They are talking over each other about their days.  There are papers all over the place asking for my contact info and signature and we have class rules/guidelines/syllabuses (syllabi) for every subject known to man.

Poor mom.  She did not enjoy her dinner…too much kids!  She has been trying to go to bed since 5:00pm, but every time she folds down a sheet or fluffs a pillow, she has to come ask me about the difference or what’s “wrong”.  Even after dinner while we tried to watch some television, she couldn’t take her eyes off the bed.  She knows, somewhere down deep, that something is not quite right.

I am hopeful that it will stop bothering her.  I don’t think she’ll ever get completely used to it.  She asks at least once a week if “that is my bed” or “how do I get back to my room” (while she is sitting in the middle of it.

At least things are winding down…so maybe I’m not exactly ‘wicked smart’, but I think we made the right decision to get it all done in one day.  At least I hope so!

 

Lazy Day, Lazy Dog

It’s here…the last Saturday of summer vacation…and I am feeling a bit sad about that.  We are ready…as ready as we’re going to be unless I hit the lotto today!  My daughter is busting at the seams to go back…my son – not so much.

Football, his favorite subject, has already started.  He finished up his football fundraiser last night and I am so proud of him.  They had their first scrimmage yesterday and they played well.  So, he’s already seen the people he cares most about and is up to his elbows in what he considers the best reason to go to public school…athletics!

So, he’s determined to have a lazy day.  He is helping me water the lawn and then finding time to chill between sprinkler moves (I could just scream at the people who “saved” $1500 by not installing sprinklers when this house was built!)

Sophie was only too happy to join him…

Not a bad way to spend the am, for a boy or a Sophie!  Happy Saturday everyone (woof!)

SWS08.09.14

Five Minute Friday – Change

mother daughter hands

It’s Friday – the last Friday of summer vacation.  Last night my daughter had her open house at her new middle school, I met my new PTA crew and today, my son has his first football scrimmage.  We are at the tail end of the back-to-school process.  Things are about to CHANGE.

So, it is fitting that I am linking up with Kate Motaung at Heading Home for another Five Minute Friday.  Today, Kate has chosen the word “CHANGE” as our inspiration.  Inspiration to write, unedited, for 5 minutes flat.  Don’t overthink it.  Don’t worry about grammar and spelling and sentence length…just let it flow for 5 unbridled minutes!

So here we go…

CHANGE

Everything in my world has CHANGED in the past 18 months.  The thing that always defined me (my work) is over.  The freedom to go and do as I pleased is gone.  The teeny tiny babies I’ve been raising for 15 and 12 years are no where to be found – they grew up and in their places are these 2 amazing young adults.  What matters most to me is different than I ever dreamed.

And a great big spotlight was shined on it all last night in the hallway of my daughter’s middle school at the PTA table.  People I hadn’t seen in a long time were there asking me questions about “what I was doing these days”.  New people I hadn’t met before, but who know my kiddos, wanted to know “what I did for a living?”  And I was saying it out loud.

CHANGE

When mom had her stroke and my career ended and we moved her in and we started on this journey, I had some ideas of what it would be like….they have CHANGED.  But it was all so fast.  It was reactionary.  It was necessary.  And that’s how I roll in a crisis – I do what needs to be done and work out the details later.

So, we’ve made a lot of CHANGES to accommodate this new lifestyle.   We’ve made sacrifices too.  And we’ve realized a lot of benefits too.  A lot of CHANGE is wrapped in both.  Good and bad.  Exciting and terrifying.  Pro and con.  Easier and harder…sometimes MUCH harder.

But it’s been worth it.  Mom is safe.  She is cared for.  She is loved.  She is getting worse day by day (and that’s a CHANGE I can live without).  I am getting to spend more time that I ever dreamed possible with my family.  I am writing every day.  I am swimming every day.  My cholesterol is much lower.  My stress is minimal.  My attitude is bright.  My time in prayer and meditation is finally allowed to be a priority.

CHANGE is inevitable.  CHANGE is necessary.  CHANGE keeps the wheels turning.  Even unexpected, not-exactly-welcome CHANGE is a blessing.  God has a plan and for me, CHANGE has always been a giant billboard announcement of that plan – IF I slow down enough to look at it.  And settle down enough to embrace it.  And learn from it.  And grow in it.

STOP

I wouldn’t trade this past 18 months for anything…well, maybe to get my mother’s health back.  It’s so sad to see her like this.  But it is all part of God’s plan.  One piece of a greater puzzle.  So I will continue to embrace this new life and get ready for whatever the next CHANGE may be…

If you haven’t already – you should head on over to Kate’s and join us this Friday for just 5 minutes.  I’m always glad I did!

 

Good News, Bad News…Alzheimer’s Style

When you live with someone who has full-on Alzheimer’s, you learn to not ‘expect’ things.  Because the ALZ brain does not fire the way the non-ALZ brain fires.  That means it is very difficult to predict responses or moods or what might normally be the ‘logical’ reaction to anything.

And it can change from day to day.  What made mom happy yesterday – not so much today.  Just because macaroni and cheese has always been her favorite food, don’t assume she will eat even one bite anymore.

And her reactions to things can change dramatically.

For instance (you knew that was coming, right?) she has been suffering from a swollen, tender wrist and hand since Monday.  And even though she can’t remember that she has been suffering since Monday – or since 5 minutes ago, as a matter of fact – it has affected her behavior.  She has been whinier. She has been less likely to move from room to room.  She has daydreamed more, all the while talking about things that make no sense to anyone but her.  And she’s been putting on make-up non-stop…I have no idea what that means!

The good news is – the x-rays proved that nothing was broken.  The doctor prescribed medication and pain killers to help her feel better.  She is on the road to recovery.

The bad news is – she is in a foul mood.  Not sure if it’s that we are returning to our regular lives and schedules, meaning she is getting less attention.  Or perhaps it’s because of the medication – it’s hard to tell how a new medication effects someone who can’t tell you.

She is cursing more.  She is using a nasty tone and short, staccato sentences to communicate.  She is complaining constantly.  And she is being really nasty to my kids.  They are trying to step in and help where they can – they know this is the last week they can even try and help since school starts on Monday.  And mom is having NONE of it.

Today she barked at my daughter twice in a 5 minute period.  Once because she offered to clear her 100% licked-clean, dry-to-the-bone, empty plate and coffee cup from the table.  And again when she kindly rolled her walker over so it would be in her reach as she got up from the table.

And I lost it.  Probably because this is the last week of summer.  Probably because of the immense sense of relief that her wrist isn’t broken.  Probably because of the amount of things I haven’t been able to get crossed off my list with this arthritis flare-up.

I cut mom a LOT of slack.  I am surprisingly kind and patient with her no matter how many times she asks me a question.  No matter how many times she calls me into her room or the bathroom only to forget what she needed.  When I help her do her exercises and play her word games and wash her bedding after every accident and clean her bathroom 2 or 3 times each day and as I prepare her 8-10 meals every day.  I do it all with a smile and understanding.  Because it’s no one’s fault and I may need the same kind of care someday.  So I cut her a LOT of slack…maybe I’m hoping for good Karma!

But (and I do NOT care what the textbooks or experts say) I am tired of expecting less of her in the way of human decency.  Be nice.  Be polite.  Be patient.  Be humane.  And I told her so this morning after her second outburst with my daughter.  Oooohh, she got mad.  She got ‘down-right nasty’ (as she says) and said some things she would be embarrassed by if she could remember that she said them.

She is busy doing her form of ‘apologizing’ right now.  She is complimenting my pretty sweater (a faded gray Ohio State t-shirt of my husbands that I threw on over my bathing suit this morning) and my hair (left to dry naturally from our swim this morning…definitely NOT a style to be complimented).  She doesn’t know what she did, but she knows it was wrong.

And I am back to patience and kindness, but I am not over her behavior.  I am trying.  I will keep trying.  I keep reminding myself that we got good news – it’s not broken.  I can’t even imagine how difficult putting her in a cast or a splint would be.  So this is better.  And once we’ve been in our ‘regular’ routines for a couple more days, she may go back to a kinder, gentler version of herself.

That would definitely be good news!

One Word Wednesday – PLAN

Are you kidding me!  I squawked when we pulled the word – and yes, it was so loud, it woke mom up!  Why not?  That’s the kind of week I’ve been having!

One Word Wednesday once again and I’m late because my “best laid PLANS” have been tossed all over the place by Alzheimer’s and my mom’s needs.

PLAN is a painful word when you are caring for someone with Alzheimer’s – especially if you are a PLANner, like me.  Plans are dear to my heart.  Important to my daily cadence.  A requirement for my peace of mind.

Enter mom.  Stubborn.  Independent (in her mind, at least).  Anxious.  Terrified.  Confused.  And a Master Delayer/Distracter.   She can apply lipstick 17 times in an effort to NOT do something that is on my plan!

I have so very much to say about this, but as fate would have it.  Mom and her swollen wrist has me (and my family) so far off their plan – that I will have to come back to it and share through my old Google Blogger site A Little Bit of This and That after I get us caught back up…or am so exhausted that I have no other recourse but to sit down and type it out!

What about you?  How do you benefit from your PLAN?  Or, like me, suffer from your PLAN?  Or perhaps you could share some secrets that we could all use to make and stick to a PLAN!  (That would be nice!)

LInk up below or leave your take on PLAN in the comments section below!  I am borderline manic today – so I will be totally thrilled to put someone else’s words in my brain or to have a laugh or to learn something new or to just read a beautiful story!  Thanks in advance!  Okay, it’s your turn…

Am I pushing too hard…???

Tuesdays have kind of become my Top 10 days.  I even had one at the ready – all about the Top 10 things I am doing to stave off Alzheimer’s – but I have something else on my mind that needs to get OUT!

I swam this morning all by myself…my sweet daughter needed a break from the early, early rising – and my mind was stuck in a scary place…

…am I pushing mom too hard when she is trying to let go…?

What if that’s true?  What if I, like Sally Field in Steel Magnolias am “sitting her pushing, the way I always have where Shelby (Mom) is concerned…” and she’s trying to let go.

She can’t tell me.  She has no idea what is happening to her.  She can fall asleep buttoning her shirt (like she did this morning) 5 times … that’s a nap a button!  And that’s 20 minutes to button a shirt.  She doesn’t want to do anything anymore.

She doesn’t enjoy conversation.  She doesn’t enjoy television.  She doesn’t want to work her puzzles anymore.  She won’t play cards or matching games.  She despises her exercises.  She is terrified to leave the house.  She loves to eat, but only sweets.  She doesn’t want to look at pictures or the newspaper or a magazine.

She wants to sit.

But if she doesn’t do her exercises.  Or walk.  Or stand up by herself.  Or eat food.  Or use her mind occasionally.  Or brush her teeth.  Or get up and go to the bathroom….if she doesn’t do anything, she is going to lose the ability to do anything.

What if that is her plan and she can’t tell me?  What if she is so eager to please that she is doing all of this for me and not her?  What if?

I can’t seem to get this out of my head.  And I don’t know what to do.  And I can’t think of any way to ask mom.  Do I just take her cues?

What if I’m wrong and she’s just tired or achy or feeling a bit under the weather and I let her lose more of her muscle strength?  Or she gets pneumonia again?  And ends up in a wheelchair?  Or back in the hospital?  What is the answer?

The only person I’ve been close to that has passed away was my daddy…and he died of a heart attack rather suddenly.  At home.  In his bed.  Holding my mom’s hand.  No prolonged illness.  No big red flags.

My grandmother was just like mom, but in a nursing home.  Mom really never went to visit and certainly didn’t talk about it.  So I have no idea how that all went down.  I drove mom to the funeral and we got to see everyone…but that was 15+ years ago.  And Grandma was 96 – I don’t think anyone was really asking “why?”.  She was old.  People die all the time from just being 96…no other reason necessary!

Mom has always had a will to survive…so, I can’t believe she is trying to stop living…but what if she is?  It just keeps popping into my brain that I might be doing her more harm than good.  I’m doing what I think is right…but how do you KNOW with Alzheimer’s???  I’m not ready for her to go…but what if…?

I think I’m overthinking this.  I think it’s just been a really difficult couple of days.  I am probably being a caregiver drama queen…but once I had the thought, I couldn’t get rid of the thought.  Sorry!

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