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!

Friday, March 21, 2014

Five Minute Friday: Joy

This has been a big week for me!  As part of my caregiving journey, I have decided to start a website.  A place where I can do a bit more to create community for others who are involved in caring for a loved one long term - whether in or out of their home. 

It's coming along, thanks to my brilliant husband and other bloggers who have posted their tips and tricks!, but it's clearly still a work in progress.

I couldn't miss a FMF with Lisa-Jo, but wanted to post to the new site....I'd love for you to hop on over and see what you think - I welcome all constructive feedback!


Happy Friday!

Sunday, March 16, 2014

In an instance...

It was just breakfast.  Nothing fancy.  Cereal with fruit, actually.  It doesn't get much simpler than that.  And toast for mom, of course.  Not sure where that comes from.  I don't recall mom ever being a toast person except when we had breakfast for dinner when I was a little girl and Daddy was traveling for work.

Anyway, the first week that mom was here we had eggs with potatoes or something like that.  And mom specifically asked for a piece of toast.  I never have toast if I have potatoes or cereal - or anything else that kind of falls into the toast food group.  But hey!  No big deal.  I made her a piece of toast with too much jelly, just the way she likes it.

The following week, I made breakfast sandwiches and she asked for toast again.  It was breakfast sandwich - a whole English muffin - toast of a sort on both sides of eggs and sausage and cheese.  Weird.  But okay - I made her a slice of toast.

And I have made her a slice of toast every day since.  I wonder sometimes if she would miss it if I didn't make it.  It might have been one of those passing ALZ things.  I'm not planning on risking it.  It's part of the routine.  The precious morning routine - which is the most pleasant, easiest, most dependable routine of the day. 

Which brings me to this morning.

Every morning before mom will sit down at the table, she counts the pills she takes with her morning meal.  Currently, the count is FOUR.  Funny how, if the count changes due to some new or removed prescription, it doesn't throw her off - she just counts to three or five or whatever.  But she has to count.  Out loud.  And then she pulls her chair out and sits down.

Then she makes a joke about "all those pills", lines them up and says "I have to take all these, right?"  And I say, "Yes mom.  One at a time.  With your water."  And that's how it has been every morning for nearly a year.

I lay out her breakfast the same way every day.  It has always worked.  Until today.

I have no idea how it happened.  I turned around for just a minute to put a knife in the dishwasher and make sure I had turned the coffee maker off. 

When I turned back around, she was tapping her water cup with her finger - and it was on the other side of the place mat - and she was clearly confused.  I asked if there was anything wrong and she couldn't get the words out in a complete sentence, but it was her way of asking what the water was for.  I told her it was to take her pills with and to keep her hydrated so her blood pressure didn't fall too low. 

And she got so sad.  She told me she had really messed things up this time and pointed to her cereal bowl.  She had put her pills into the cereal and milk.  What? 

And since our roles are so completely reversed - I just fished them out with my fingers like I would do with my kids.  No spoon.  No ceremony.  Just fingers.  Quickly.  Before they melted or had some weird milk reaction.  Can that even happen?  I flashed on some memory of a medicine that can't be taken with dairy.  Was that me or mom or one of the kiddos?  No idea. 

Maybe I was too calm about it.  Because mom just looked up at me and smiled.  And then looked down at her pills.  And then picked up her spoon to eat the cereal.  I let her know that she needed to take the pills - one at a time - with her water. 

And just like that, we were back on track....and she has no idea it even happened.

Saturday, March 15, 2014

Cloudy with a Chance of Cinnamon Rolls

It's Saturday. 

It's overcast.

It's Daylight Savings Time.

All of that means a lazy morning for me and mom.  I woke up early, but knew the darkness of the morning would keep her happily in bed for an hour or so.  I also had Grands Cinnamon rolls in the fridge.  I am the goddess of price-matching, after all (4 rolls for $5 - can't beat that with a stick, as mom used to say!) 

So, in honor of the perfectly overcast, no-thought-needed-to-prepare-breakfast morning, I spent 20 minutes with Ann Voskamp's blog and 20 minutes with some gentle yoga before I faced the day.

It had all the quirks that come from caring for someone with Alzheimer's.  The questions that don't need to be answered, but that she needs to say out loud.  The sounds she makes in hopes of me coming to her side to reinforce that she is doing things right.  The 3-5 questions concerning her clothes for the day.  The sigh that comes each time she has to bend over to tie her shoe.  The grumbled argument she has with her comforter each day as she struggles to make her own bed.  And the counting of the morning pills before she sits down at the table.

But today - well-rested and in a kitchen filled with the smell of cinnamon rolls - I captured joy.

Best of all - mom captured joy this morning too!  In each and every bite of her rolls.  In every lick of her finger.  In the scraping and wiping clean of her plate of every last bit of icing.  In words that hinted at memories of cinnamon roll breakfasts from a long time ago. 

And in her coffee.  Mom makes those people in Seattle look like hobbyists compared to her love and passion for coffee.  Nothing fancy or doctored up.  Coffee.  Dark or Italian Roast Coffee. 

I get to see that coffee joy at least twice a day and it makes me feel so good to know that I can help facilitate that for her.  But this morning - quadruple that with a warm plate of cinnamon rolls.

It wasn't lasting, but it was perfect.  It was childlike.  There were no worries for those few minutes.  Nothing forgotten.  No missing words.  No anxious glances.  Just coffee and cinnamon rolls and sticky fingers and contentment.

Friday, March 14, 2014

Five Minute Friday: Crowd

Here it is Friday again - this week has flown by in true Spring Break fashion.  I am sure I would tire of all this leisure if it were my daily norm, but Oh, how I adore the weeks with no school, no homework, no dance, no conditioning, no cheer, no bedtimes!  And now it's Friday - the last official day of Spring Break.  Tomorrow is just the start of another weekend, with school on the other side of it.  But for today - it is still Spring Break.

Which brings me to today's FMF topic:  Crowd

A crowd by definition is a large group of people.  My mom seems to crave people - she constantly asks for more people.  "Where is everybody today?" is one of the Top 10 QODs in our world.  And yet...

and yet...

This week, there are actually lots more people around - the kids, their friends, my husband and mom is no longer interested in more people.  She is clearly confused by the presence of these real people.

I think the crowd she is craving are people from her past or people she has imagined or conjured up from bits and pieces of memories that are frayed.  She'll tell me daily about conversations she has had or things she has "heard" from maybe the neighbors across the street or Sophie, our dog, or "everyone" - no idea exactly who they are, but they are very real to mom. 

The crowd mom is looking for brings with it renewed independence.  Her own home.  Her own activities.  A husband.  A golf foursome.  The ladies at BINGO.  The ladies at her favorite restaurant or the Senior Center.  Maybe her family when she was younger.  Her schoolmates.  Her co-workers.  Rarely her immediate family - the one I am part of. 

I wonder if it's the people she really misses or if it's the idea of a time when things weren't so scary, when remembering was easier, when words weren't so hard to find.  Because this week, surrounded by people, mom was still asking "Where is everybody?".

I'm right here, mom...you won't have to be alone, I promise....not exactly what she wants, but it's the best I can do. 

This post is part of Lisa Jo Baker’s Five Minute Friday, in response to the prompt “crowd” I wrote for 5 minutes and published without editing, in 5 minute Friday tradition.

Thursday, March 13, 2014


Funny as it is to see in print - this is how I have felt several times over the past 3 days.  This Spring Break has mom in a tizzle.  No use in explaining what is going on - it doesn't matter.  It's different and that is bad...or is it?

This is the cause of my wail, growl, frustration.

Mom finds any kind of change upsetting.  She is less anxious when things are the same.  When the routine is followed.  And yet...

...she has spent the past 3 days asking if there is anything "special" going on.  How do I answer that?  If I tell her about an appointment or a friend who is coming over - it envelopes her.  It haunts her in the very back of her mind...that scratch in the middle of your back that you can't quite reach.  She becomes visibly worried.  I can see it in her eyes.  In the questions she starts but refuses to finish.  In the wringing of her hands and the folding and refolding of a tissue.

If I say "no, nothing special"...she complains.  She mutters.  She says things that are ugly and hurtful under her breath, but always just loud enough for me to hear.  And she won't let it go.  "This place USED to have so many activities.  And what are they using their time on...they certainly aren't shoveling the snow all over the yard out there.  (we have NO snow on the ground)  Or picking up the trash out there.  (they are leaves - we have a lot of trees for a suburban TX backyard!).  "I guess I can't expect anyone to care anything about an old woman.  HEY! (this is her new name for me)  HEY!  I need you to do me a favor.  I need you to get me a phone and my daughter Lisa's phone number.  I want her to get me out of this place!" 

Where do you go with that?

Clearly - I want to avoid telling her about appointments so I don't upset her.  Because as thick as my skin is, the ugly comments break me down.  Not so much when we are alone, but on Spring Break when my family is home and can see this side of mom...ugh!  Fragile flower?  Hardly!  But dang!  A girl can only take so much complaining.  When it's my kids - I send them to their room to do an attitude inventory and adjustment.  How do you make a grown woman go to her room?  As fully aware as I am that we have completed total role reversal - I can't quite get to the "go to your room until you can be polite" with mom.

Because who are we kidding?  She has no idea she is being ugly.  Or complaining.  Or anything else.  For those of you who are caregivers for ALZ - you know the futile feeling of trying to have a conversation about something like this only to realize 90 seconds in - they haven't the slightest idea what you are talking about or how this started.  AAAARRRRRRRRGGGGGGGHHHHHHHH!

Hopefully this is a passing phase.  One of those things that goes as quickly and abruptly as it came.  Routine is a pain and requires planning, but it can be done...this new thing...I got nothin'!  I can't make her happy when she is so intent on being displeased (picture that facial expression in your mind for a window into my week!)   Even if it doesn't go back to the old way - it has to change to something else, right?  Fingers crossed!

Tuesday, March 11, 2014

Going the Extra Mile

Today mom had Physical Therapy* - and she hates it!  Anything that requires effort - physical effort especially - she does NOT like.  I have all her exercises and I try to do them with her, but it has become a battle I just can't fight anymore.  It makes her angry.  It ruins her day, her appetite, her sleep and her routine.

Doing PT with someone else works out much better.  Mom will always be civil when there are strangers around.  If I can get her prepared, say the right things and get the visit off on the right foot - she is polite to a fault.  It's nice.  I think it's nice for her too.  She likes the attention.  She likes the "conversation" if you can call it that.

Today's conversational theme has been "How did I end up here?".  It started almost as soon as she opened her eyes and has carried through the entire day.  No matter how in depth the answer or how flippant - we even got out pictures to illustrate the point - she just can't get off that one question.

Anyway, today she had PT with Monica.  I adore Monica.  Monica knows how to handle mom.  When she is here - the exercises get done.  She can even get mom to leave the house to walk!  She's braver than I am - I am always afraid mom is going to shoot down the driveway and fall because it's so steep.  Not Monica - she has mom hold her hand brakes, grabs her by the back of her britches and off they go!  Monica rocks!

So Monica came and mom transferred her question from me ("How did I end up here/at this place?") to Monica.  "I wish I could figure out how I got here and when are they going to take me back?"

Obviously, Monica said "back where?" and they were off.  Mom told her where she was from, so M looked it up on her iPad and asked mom questions or told mom fun facts about her home town while mom "bicylcled".  Mom switched up the story somewhere in the middle of her exercises and started talking about Ohio and off M went again - time to look up fun OH facts. Mom really enjoyed this.  I guess I should have known - I keep mom's hometown on my phone's weather widget so I can tell her how the weather is where she was born.  She always gets a kick out of it.  She did her exercises without complaint.

After her "laps", mom needed a rest, so Monica got out the pictures that we had been looking at and started asking mom questions and complimenting her on how pretty her home was or her outfit or her hair.  It was all a clever way to give mom time to rest before her last series of exercises - but she enjoyed herself so much.

She didn't have to do that.  She never does, and yet - she is always prepared, friendly, motivating, smiling and professional.  How lucky we are that we found her.  How lucky we are that we know to request her when it's time for PT.  How lucky!

*my aside about physical therapy for Medicare patients is this (warning - this is me venting!):  It is crap that they won't fund Physical and/or Speech Therapy once they deem the patient has "plateaued".  ALZ patients, by definition, can't improve, particularly in Speech Therapy - they have limitations on what they can remember - but that doesn't mean the exercises aren't making them function better.  Mom is 86 and uses a walker - she is going to plateau quicker than a lot of people physically.  BUT - the therapy makes a difference - a BIG difference.   In her attitude.  In her overall health.  Making it less likely that she will fall or get so winded so quickly.  So after 8 weeks of great therapy, we have to let it go until mom falls or feels a new ache or pain.  Forget about Speech Therapy - it helped her most of all, but there is no shot at getting recertified the way the rules are written.  We have to go backwards to get the therapy she needs.  There are so many rules.  And it seems like they have been put in place to keep people from taking advantage of something (I have no idea what) instead of putting rules in place that show understanding of the disease and the patient and their needs.  Like I said - I think it 's a bunch of crap.  Sorry for the rant but thanks for listening!

Friday, March 7, 2014

Five Minute Friday: Willing

I am late, late, late!  Late to be sitting down at the computer because I got to sleep in and swim at 9:15am instead of 5:00am.  What a treat!  And you know what floated through my brain around lap 9?  Five Minute Friday!  Today is FRIDAY!  I wonder what the prompt will be?  I wonder if posting at an unusual time will introduce me to some new bloggers - introduce me to a message I am supposed to hear.  Give me the opportunity to share my story with someone new?  Wow! 

And then I realize I needed to concentrate on my breath or sputter and drown!  But how wonderful that this new habit is one I look so forward to that it can overtake a precious moment like my morning swim.

Anyway, today's prompt is "Willing" - which leads me right back to mom.  One of the sayings she still remembers and still uses is "If the good Lord's willing and the creek don't rise."  How that is woven through my entire life...


What am I willing to do?  What a loaded question!  What does that even mean?  And why is so easy to say no to someone else's life choices because they are difficult, but a non-issue when it is your life?

Many of my friends tell me they could "never do what I'm doing"...meaning they would not be able to change their lives to care for their parents.  I think they say that because they don't think that it will ever be an issue.  I believe when we are needed - we will all be willing.

Maybe that's just the slice of humanity that I spend my time with, but I can't imagine any of them not stepping up, stepping in, doing what's right - no matter how difficult.

Today I found a mess in mom's bathroom.  Did I sigh?  Yes!  Did a mutter a couple of choice un-Christian sentences?  You betcha!  And then I got to work and tidied up.  I was willing because it needed to be done.

Mom wanted to know if it was cold outside today - for a solid hour she wanted to know.  Does it matter?  Nope!  Could I have ignored her question?  Yes.  But when your world has gotten so small and scary and confusing that the weather is the safest subject - weather, days of the week, meals and the names of celebrities are our top 4 right now!  The least I can do as her caregiver and daughter is to answer.  To be willing to answer EVERY TIME with enthusiasm, truth, sincerity, patience and kindness...knowing all the while she will not be able to process my answer or store it anywhere in her mind.   To be willing to get up and open the door and let her feel the cool breeze and smile while she shivers and "remembers" what cold is and to do it as many times as it takes.

She's my mom and I, for today at least, am her willing daughter.

This post is part of Lisa Jo Baker’s Five Minute Friday, in response to the prompt “choose” I wrote for 5 minutes and published without editing, in 5 minute Friday tradition.

Wednesday, March 5, 2014

Silliness is Worth the Extra Explanation

 It's not a huge secret that I require Jimmy Fallon in my day.  To me, he is joy.  He makes me laugh out loud.  And at the risk of sounding pitiful - his show is an hourly vacation for me.  I wish I could stay up to watch it live - because you'd have to live under a rock to not see clips and spoil some of the magic when you watch it the following afternoon.  And even though he's on earlier now, I get up at 4:25am to get my swim in, so Jimmy entertains me while I make dinner every evening. 

Mom usually sits in the family room while I chop and cook and putter around the kitchen and as I have said before - she seems to really enjoy watching too.

Last night we watched Monday's show - actually I had watched the clip from the monologue about John Travolta's mix up at the Oscars at least 20 times throughout the day - had to show it to my husband, the kids and just because when I even think about it - I start to giggle!  So while I was making the world's best turkey meatloaf (NO, that's not an oxymoron - it's ridiculously delish) we watched the rest of the show.

What a great show.  You just can't argue with Jimmy and Tina Fey - they were great on Weekend Update and they are great now.  Her stories about her kids - hysterical.  The Russian accent - funny.  And then there was the "Lip Flip".  I couldn't breathe!  I know I like to laugh more than a lot of people and I'm not remotely cool about it - I laugh loudly - with gusto, you might say.  And this was so funny.

And mom just didn't get it.  It's one of the things you have to learn to have patience and understanding for as an ALZ caregiver.  Why on earth would a Lip Flip version of Endless Love make sense?  First it was "what is wrong with those people?", then "what is that supposed to mean?", then "what is his...her?... name?"  So I would pause it and try and explain.  That did not help.  At all!  So I watched.  And I laughed (loud enough that my son had to come downstairs to see what the ruckus was about!).  And mom kept watching and asking questions.  Finally I said "Mom, it's just silliness."  and in a moment of clarity she said "well if it's just silliness...can we watch it again?  I like a little silliness."  So we watched it again and she still didn't get it, but she laughed with me.  And it was further confirmation that Jimmy Fallon is contagious joy and who doesn't need a more of that in their lives!?

In case you didn't see it (and I am smart enough to put this link in correctly...) here it is.  Enjoy!

Jimmy Fallon Tina Fey Lip Flip

Tuesday, March 4, 2014

Caregiver Discontent...

I am not proud of this, but Sunday I was a big ole whiny baby.  A "thumb-sucker" is what Daddy would have called me!  I somehow got caught up in feeling sorry for myself and it was not pretty!

Last weekend was my son's birthday - Friday we did some family stuff and Saturday was a day for him and his buddies.   The family stuff is always weird - like I've said - we have to pretend no one is having a birthday or anniversary or celebration of any kind because it really upsets mom.  I feel like it magnifies her awareness of all she is forgetting and I am beginning to understand how devastating that is for her.

Anyway - in order to have a "party" for my son with an ALZ housemate - there is planning.  Planning the day on Saturday so we could have dinner early enough for mom to settle into some tv time so I could sneak away to pick up friends and drop kids off at Altitude.  Planning the "back from the party" meal/snacks/drinks so as not to make too much noise that will wake mom up and might end up surprising everyone with a parade in her less-than-full-coverage nightie that she now prefers.  Planning the quietest way to get trash from his room outside so the dog didn't go all scavenger on his room and my house.  And figuring out how in heaven's name I'm going stay up and be able to drive safely at midnight!

This is not what made me a baby - I like the planning.  I like making things special for the kids.  I feel good about myself when I go the extra mile to make mom as comfortable as possible.  I was looking forward to an evening (even if it would really only be 90 minutes) at home, just mom and me.

I wasn't even whiny on Sunday morning when I had to set my alarm so I could get up and make mom her breakfast on "schedule".  The ice storm I woke up to didn't push me over the edge either.  Discovering that we were out of bread pushed one of my buttons, but oh well!  But somewhere after breakfast, after dishes, after an ice storm trip to a packed grocery with a face and ensemble that screamed "hey, this lady didn't get enough sleep or shower yet this morning", after getting very sleepy, grumpy teenage boys up so I could get them home before they got iced in at our house (NO!!!!), after getting my kids breakfast of sorts and answered the same question 20 times (I wonder if Lisa is coming to get me today?), but before lunch - I cracked!

I was done.  Done caring for others.  Done cleaning up after everyone.  Done answering questions.  Done watching tv that "everyone" can agree on.  Done. 

Don't get me wrong - I wasn't done enough to not DO.  I still made a hot lunch that everyone liked.  I still did dishes.  I watched tv.  I answered mom's questions.  I printed off Oscar BINGO cards.  I started laundry - including ALL the bedding from my son's room after the gross, feet-smelling teenage boy party the night before.  I salted the front sidewalk.  I packed snacks for the week's lunch bags.  I made muffins for the week's breakfast.  I put drinks in the fridge.  I even put gas in my car so my husband could drive it to work - it's safer and has much better heat!  My whole body ached from the raking and yard work we had done on Saturday while it was over 80 degrees.  My sinuses were in a pressure craze from the huge changes in weather and my kids still had homework that needed doing and there was a dinner that needed preparing.

And so I was a whiny, thumb-sucking, over-sighing, foot stomping, mumbling, eye rolling baby.   And it lasted much longer than I meant for it to.  I'm not sure anyone is worse for the wear - sadly, my kids think I am "funny" when I get grumpy.  They are probably right.  I'm not even sure mom noticed my mood. 

Oh well, it's over.  I'm back among the grateful.  The pleasant.  The glass-half-fullers.  The question answerers.  The caregivers!