Five Minute Friday – Notice

Another Friday – it’s actually almost over!  But it IS Friday and that means 5 minutes of free-spirited writing with lots of others over at Heading Home with Kate Motaung for Five Minute Friday.

This week’s word is NOTICE.  I enjoy the words that can be expressed in so many different ways…I wonder which way the keyboard will take me today…???


I wonder what they notice when they look at me?  Those who aren’t my close friends.  The people who I see on committees and in passing at the kid’s games or schools or events.  The faces I recognize at shops and the farmer’s market and my favorite gas/coffee stop.

They don’t know me well enough to know the journey I have been on for the past couple of years.  The harsh reality of the past month.  They never met my mom, so they wouldn’t miss her like I do.

I wonder if they notice how different I am?  I wonder if they see a lightness from my new freedom from all the responsibility of full-time caregiving?  I wonder if they notice my sorrow and grief?  Do they notice that on certain mornings a peppermint mocha makes me tear up or that I don’t buy denture adhesive or adult briefs anymore?  Do they notice that I no longer have to run through the market because there is no deadline anymore?

Or, like me, are they so wrapped up in their own stuff, their own struggles, that they don’t notice anything different at all?

Life goes on.  That’s what I notice.  Life has to go on.  It’s how I was made.  My faith assures me that everything is exactly how it is supposed to be.  And that makes it okay to laugh out loud and enjoy life and praise each day.  Life goes on.  It’s appropriate.  It’s necessary.  But it’s gotten me thinking – a lot.

What are others going through that I’m not noticing?  What is their backstory?  What are they carrying and feeling and thinking about.  What are the things I’m not noticing?  I’ll probably never know.  I can look and look and still not see.  But I can be kinder.  More patient.  More transparent.  More caring.  I can offer genuine smiles and take time to speak and to listen.  I can make a point of paying attention.  A point of connecting in the moment.

I feel completely different since mom died.  I have been changed by our journey.  So many day-to-day things remind me of her.  And there are these out-of-nowhere memories that rock my soul.  Take my breath away and make me so very sad.  And then life goes on – as it should.  And probably, no one really notices a difference, no matter how much I’ve been changed.


Ignoring something rarely makes it go away…

What a week.  What a manic, blue kind of week.  And, other than the obvious “I just lost my mother” thing – I couldn’t quite figure it out.

The weirdest part was my complete inability to finish anything.  And sometimes start anything.  Or focus.  Or sleep through the night.  I was kind of all over the place.

I am sad.  I knew I would be, but as a classically trained “Push Through It” girl – I didn’t expect it to interfere the way it did this week.  Now, I am fully aware that we (the kids and I) are so very ready for this Thanksgiving break – so I tried really hard to push all my issues off to that.  But that just wasn’t it.

I got this idea that the pantry needed cleaning out and I would start, but then part way in – I had to just pile everything back in with only 2 shelves done.  I couldn’t get my head around it.  I decided to relax and watch a movie and got as far as the comfy chair and remote and couldn’t decide.  I just channel-surfed until I just couldn’t deal with another minute of television.  I started to deep clean my bathroom and got the ickiest part done (and yes, that is the whole under and behind the toilet thing…ugh) and quit.  I ran out of steam.

I’ve sat down at the computer to type.  I’ve picked up books to read.  I’ve opened up boxes of old school momentos to go through.  I’ve thumbed through my contacts, landing on a number that I wanted to call and somehow didn’t dial.

It’s worrysome.  I’ve made it up every morning.  Gotten the kids to school on time with full backpacks and lunch bags.  I’ve gotten beds made and some random vacuuming done.  I’ve showered and had moderately good hair most days.  And I’m so tired at the end of the day.  So tired.  And I have no idea how to explain what exactly I am doing to run out of hours in the day and to feel so exhausted…but I am.

I am pleased to announce that I think I have figured it out!

I am being haunted by the last few things I need to do to close the book on mom’s passing.  Not to close the book on grieving or missing her, but to close the book on the details of death.  So, I made a check list!

First up – call the pharmacy and cancel all her auto-refills so those voice mails stop attacking me.  Check!

Next – find a box to finish packing up all the mementos we’ve chosen to keep.  Check!

Next – write a letter explaining the things we decided to keep so the kids will have the memories and pictures to share with their kids someday.   Check!

And then – finally – the big one…write thank you notes to all the people who have helped me take care of mom.  This was the thing I was avoiding at all costs.  The thing that I kept hiding under other things.

So, I made some tea, made a fire and got busy.  I had to make a couple of calls to confirm last names and the spelling of first names, but I was able to make a list pretty quickly.  So I wrote.  And wrote.  And cried.

I am so incredibly thankful to everyone who came to bathe or primp or pray with mom.  All the doctors and nursed and physical therapist who encouraged her to fight to get back to good health.  And to every single hospice person who listened and cared and gave advice and encouragement.  And to my incredible friends and neighbors who brought food for my family so we could sit down at our dinner table without me having to plan or cook or resort to fast food.

But it was hard.  And I am worn out.  And I still have 2 more to write…but I’m out of cards and too weary to deal with it until tomorrow.  But even with a couple more to go – I can feel a weight lifting off my chest.  I was avoiding some of the final arrangements that needed to be made.  So, I guess my conscience was poking at me – not letting me start or finish or concentrate on anything else.  Not until I finished what still needed to be done.


Five Minute Friday – Still

I have been sitting here for several minutes, my fingers on the keys, but somehow unable to type anything.  It’s the first post since mom passed.  The first one that wasn’t written during that week.  That week while she was preparing us to live on without her.

It’s a cold morning (for Texas) and the house is tidy, but not clean.  Quiet, but not silent.  Cool, but not cold.  And I am trying to move on.

So, here I am, with so many others, heading over to Kate Motaung’s for Five Minute Friday.  Something I have enjoyed being part of for a couple of years now.  But not recently.  Not since mom got so bad.  So, I guess I’m moving on by going back.  Back to something familiar.  Something I enjoy.  Something that I don’t have to think too much about!  I like that!

Today, Kate has given us the prompt STILL.  And that’s where I got stuck.  STILL like my house in the mornings once the kids have gone to school or STILL like me – STILL here, STILL writing, STILL feeling.  Hmmmmm….I guess I’ll just type on in FMF fashion and not overthink and see what comes out….


STILL.  There’s nothing quite so still as a house that is missing a person.  An inhabitant.  A family member.  Not even when the time was right for them to leave.  Whether that be go to college or their new home or to heaven.  No matter that the life they have now in the arms of Jesus is far better than the existence they had on this Earth, in this house for the past few months.

The stillness is overwhelming.

And the strange thing is – I don’t dread it like I thought I would.  I sit in it – eyes closed – ears listening – mind and heart wide open – ready to know what comes next.  Ready to receive a blessing.  Hear a message.  Be inspired for this new chapter.

Sometimes I find joy in the stillness.  When I know 100% that mom is whole again.  That she is “in a better place” as we all say over and over.  When I feel assured that everything we did was the right thing for her.  For our family.

Sometimes I find sorrow.  I miss her.  It’s that simple.  She was my mother.  She was my purpose.  She was my mission for these past several years.  And I miss her in the stillness of the mornings.  I miss her over every cup of coffee and every episode of Ellen and every country song.

Sometimes I find promise.  Of the next thing.  Of a return to a more “normal” life for my family.  Of an opportunity to use this experience to change my life’s path.  Of God’s goodness and love and faithfulness.

Whatever the stillness brings – I know I need to embrace it.  Trust it.  BE in it.  I am tempted to fill it with noise and cleaning and chocolate, but an experience as precious as these past few weeks with mom deserves respect and honor and meditation and prayer.

So, bring it on!  I will do my best to honor her life and passing by being still and by staying open to the lessons that are there in the silence.





The business of letting go…

The morning after Mom went to heaven to be with Jesus and Daddy and Bagel and her brother and sister and so many others she had been calling for over the past few weeks.  It still doesn’t quite seem real.  And there are still things that need doing.  Papers that need signing and arrangements that need arranging.  But on this first morning without my mom… the world was silent.

The house is so quiet.

The kids and my husband are still asleep.  For a few minutes, the only sound I heard was the sound of the super-special air mattress that hospice sent for mom.  I guess I should have remembered to turn it off last night.  But I didn’t…

I came downstairs and my entire life seemed changed.  Was changed.  In usual fashion, I got right at it.  Pulling linens, bedding, towels, rugs, etc and loading up the washing machine.  Sanitizing trash cans and door knobs and the walker and other bits of things lying around.

I ran out of steam and made coffee.  That made me cry.  Mom loved coffee.  It was a common theme in our morning conversations.  A topic we could both count on for a shared laugh or contented sigh.  I’m really hoping there’s a diner in heaven with really great, non-fancy, old-fashioned coffee in a medium-sized white mug.  And lots of the ‘pink stuff’.

I am still incredibly weary.  But I can’t sleep…that’s pretty common, I would guess.  And as strange as it may seem – I feel the need to record what took place last night.

Because I think it was rare and special and sad and beautiful and powerful and something I may never experience again.  Because most people die of something.  A car accident.  A heart attack.  A stroke.  Cancer.  And I guess mom did die of something – Alzheimer’s.  But because it’s so invisible and because there is no cure and because there is no hope and so little that can be done past a point, it looks like nothing.

After we finished with all the bizarre juggling of kids into costumes and to parties and putting candy into bowls and setting up chairs to be ready for the neighborhood trick-or-treaters, my son and I took turns passing out candy and being with mom.  Too many people, voices actually, got mom’s breathing in distress.  So we took turns.

And then when the chairs were put away and the candy had been passed out and my daughter picked up, we all took a turn sitting with mom.  Her breathing was so quiet and had slowed back to what seemed like a ‘normal’ resting pace.  Her eyes were closed and her mouth just slightly open.  And her skin was getting smoother and smoother.  I believe it was all the moisture leaving her extremities to get to her heart and lungs so she could continue to live.  It was if I could see her appearance change minute to minute.

The nurse suggested we all get something to eat or drink and take a little break while mom was resting so peacefully, so we piled pillows and blankets and stuffies on the couch and cuddled together.  I immediately fell asleep.  It was the first time in a week that I felt comfortable resting because I knew someone was with mom.  And I thought we might have one more day…

Less than an hour later, the nurse came to get us and said “It’s time”.  And it was.  Mom was dying.  We stood with her and held her hand and told her how much we loved her and without a sound or tremble or gasp, she took her last breath.  She never opened her eyes.  She never acknowledged that we were there, but I feel certain that she knew.

The nurse left us alone with her to say goodbye.  The kids each took a private moment and I took … I have no idea.  I didn’t cry.  I didn’t really say anything.  I just prayed and held her hand.  I said goodbye and felt sadness and peace at the same time.

The rest was a hazy, blurry, groggy mess of phone calls and nurses and funeral people.   My husband was a rock.  My son was all cried out and went to bed.  My daughter and I didn’t quite know what to do with ourselves.  We have been busy caring for mom day and night for the past few weeks and now it’s over.  She is whole again.  She is independent.  She’s going to take care of us now.

Somewhere around 3:00am we went to bed.  And I slept.  Deep, deep sleep.  Till my internal alarm clock told me it was time to get up and check on mom.  And it hit me.  So it was pointless to try and go back to sleep.  And here we are.  I have to get my husband up now, because (of all things) we have to take his car into the shop this morning.  Because life goes on even when you feel like you couldn’t possibly get off the couch ever again.

Bye mom.  I love you.  We love you.  We will miss you so very much.  It’s been an adventure.  A wonderful life.  A privilege and an honor and blast.

Mom’s Journey Home, Part 4

It was on this day – mom’s last day – that I realized how dependent I have become on writing.  When I just couldn’t figure out what to do.  When I needed to do something, but didn’t want to leave the room.  When I felt like my heart was breaking.  I needed to write.  I guess that’s why the world has so many wonderful journals and collections of letters and other written documents to give us insight into our history.  It’s therapeutic.  It’s comforting.  It’s productive and busy and conversational and heartfelt.

I wrote two posts that day, her last day, that I am combining here.  It is personal…perhaps too personal.  But this process of journaling has never been about writing the easy stuff or editing out the uglier parts of Alzheimer’s.  It’s always been about sharing our story – a story so many others go through every single day in their homes and in memory care facilities and nursing homes and hospitals.  Alzheimer’s stole my mom’s ability to function.  To remember.  To enjoy life.  To feel safe.  It stole her memories and history and points of reference.  Ultimately, it stole her from us too soon. 

It is the most vicious disease.  That does the most terrible things.  That cannot currently be cured.  But family is family and love is love and God is good and mom’s story, along with all the other dementia sufferers in the world, needs to be told.  Maybe just to assure someone else.  Or to make me feel better.  Or (in my perfect world) to continue to create awareness, that will create a grassroots movement, that will create funding, that will create resources for caregivers and a cure for all forms of dementia…

Day 4 of Mom’s Journey Home

It’s time.  Maybe today.  Maybe tomorrow.  But it’s time.

Mom threw up a bunch of bile this morning and never woke up.  I cleaned her with gloves on.  For the first time, I felt like I needed gloves to clean my mother.  I didn’t know what it was or if it was dangerous.   I’ve never done this.

And I kept apologizing to mom.  Which is weird, because my mother would have been wearing gloves the entire time.  Mom was a “better safe than sorry” kind of mom.  So smart and so practical.  Two traits that have escaped me on occasion.

I called the nurse.  They have a care meeting and then she is coming by with the RN to see what’s going on.  Michele is on her way too.  This clean up is more than I can do all alone.

Mom hasn’t said a word today.  Hasn’t made a sound.  Even when I was washing her face and shoulder and moving her arm around.  Just silence.

And she hasn’t opened her eyes.  Yet.  I did just change her pain patch yesterday, so maybe that’s part of it.  I hope so, but that black bile has me scared.  And preparing.  For the thing you just can’t prepare for…

And it’s Halloween.  And my daughter has a party to go to and a costume she has been working on for a week and this is probably her last year to go trick-or-treating…and that’s probably selfish, but if she has to pass, I don’t want it to be on a holiday…

Part 4…continued…

I’m so sad.  The crisis nurse is here now and that means the end is near.  Nearer than I hoped.  Nearer than we want.  And I knew it.

Michele came by to get mom cleaned up and she was so docile.  Hardly made a sound through all the washing and moving and changing and pulling and combing and lotioning.  Just closed eyes and a limp body.  So tiny.  So frail.  And a new pressure sore on her heel.  Never a good sign.

So, I pulled up a her walker (which serves as my chair so I can get right up next to her) and the hospital table to finish up the Box Tops that I needed to have postmarked today.  (forgive me PTA, but these will be late) and I talked to her.  Talked about Box Tops and volunteering at my daughter’s school and about the dates and the counting and the value and the people.  Talked about the day.  Talked about Halloween.  Talked about the past year and a half with her in our home.  As part of our family.

And then the nurses arrived.  They checked and listened and touched and conferred.  And they turned to me with faces full of sad, inevitable news.  And I started to bargain.  Please, is there anything you can do so she doesn’t die on Halloween?  Is there any way she can last until tomorrow when my entire family will be home?  Is there any chance she could make it at least until I get my daughter to her Halloween party, because if she passes, she won’t go and she has been looking forward to this for so long….????

There’s no way of knowing.  It’s between her and Jesus now.  So, I went to get the kids out of school.

They called the crisis nurse.  I had no idea what a crisis nurse was.  I had no idea there even was such a thing as a crisis nurse.  They stay.  They come when the time has gotten critical and they stay.  They never leave mom’s side.  They watch and make notes and translate the death process.

Jesse came about 3 or 4 and he is wonderful.  He is calm and pleasant and has a Jimmy Stewart quality about his voice.  He has been explaining everything to us.  He has been so good with the kids in getting them to talk to mom and be with mom.  He has made it possible for me to get Peanut ready for her party without having to worry about watching mom every second.

We went in once she had her costume on and her hair done to show mom.  She opened her eyes for the briefest moment and said “oooooh” and smiled.  She even reached out her fingers to touch the hot pink tulle.  That was perfect.  It gave P the okay to go and have fun with her friends tonight.  I wonder how much kids can process about the stark reality of what is going on?  Especially when mom has been a version of this for more than a week?

Even I’m holding out false hope for a miracle of recovery or a long, lingering goodbye.

My son, who is in charge of passing out candy, came in to give mom a hug and she sighed.  That kind of sigh that is full of contentment.  And reached her fingers up to touch his shoulder as he held onto her.  Another beautiful moment.  He cried.  He’s not ready either.  He has always been her comfort.  The gentle boy who sits with her and plays video games and talks and talks and talks and makes her feel included in some magical world of Madden or Mario cart.  He even made a Mii for mom on the Wii.  She’s “G-Peg” and she’s a hot commodity in the Home Run Derby!

And now we are waiting.  The night crisis nurse is on her way.  The trick-or-treaters are getting much older and fewer between.  The neighborhood boys are tossing a football in the dark.  The neighborhood adults are stopping by to offer their prayers and positive thoughts. and a crock pot of killer chicken tortilla soup (thanks Cheryl) that saved my overall well-being.  I realize that for the past two days I have existed on $1 drinks from McDonald’s and tiny candy bars meant for Trick-or-Treaters.

I’m sitting one room away from mom.  She seems to breathe easier when it is very quiet.   I drift in and out of her room as quietly as I can.  I want to be right there, but I don’t want to upset the peacefulness that surrounds her.  I want her to rest.  I want her to be comfortable.  And I need for her to wait until I pick up my daughter….I need for everyone to be home to say one last goodbye.

The night nurse is here and she is serenity in scrubs.  Her voice.  Her demeanor.  The way she lays her hands on mom to care and check and monitor.  She is honest.  Very honest.

The kids are home now.  We’ve set up blankets and pillows and stuffies and jammies in the family room.  We take turns being with mom.  I am trying to explain the unexplainable.  They are so brave and strong and vulnerable and gentle and sad.  Sophie is keeping watch under mom’s bed.  She refuses to leave her side.  I can’t tell what or when anymore.  I just know that mom is ready…


Mom’s Journey Home, Part 3

The third day of the last week.  Reading this I can remember vividly the fear.  I can see my son’s face as he is almost shouting at mom to please drink something.  I looked up to see the sadness in his eyes and it broke my heart.  I remember standing with him, holding on tight as my daughter came in and joined us, Sophie right at our feet.  We just stood there and cried together while I stroked mom’s arm and they took turns squeezing her hand.

I believe this week was a bargain between mom and Jesus to help the kids gradually deal with her passing.  A gift to two beautiful children to have plenty of time to say goodbye.  To have days to give extra hugs and say a thousand “I love yous”.  To prepare themselves and to ask questions and to start to understand that letting go is completely different than giving up.  To experience something so rare and so precious and so real.

Here is Part 3 of Mom’s Journey Home…

Scary start to the day today.  Mom threw up in the night.  Not a lot.  But it was dark and that is scary.

I mixed some of the frozen Boost with some coffee ice cream – used to be her favorite.  And I think, maybe, her stomach couldn’t handle the dairy.  Of course, it could be something worse, but I’m going with lactose intolerance.

I got her cleaned up as best I could until Michele got her and we could get her bathed and changed and get her bedding changed out.  She was so out of it this morning.

Her words are quieter and quieter and fewer and fewer.  I didn’t think I would ever miss hearing “Donny” 500 times in a day – but I do.

She is still drinking water, but has forgotten how to use a straw.  I have to put some in the end of the straw and put it into her mouth.  Sometimes, just the action of that cool water hitting her tongue is enough to make her suck on the straw.  And then I can give her the cup and she will drink.  Other times, she just lets the water fall into her mouth and she swallows.  Usually, she makes that contented face that lets me know she was thirsty, but couldn’t remember how to ask or how to drink, but “thank you so much for figuring it out and getting me something to whet my whistle!”.

She no longer reaches for a warm washcloth to wipe her face or hands.  She used to love that.  Even just yesterday, I could see the comfort of that warm cloth in the way she held it to her face and hands.  Today, there is no recognition that I am even washing her face.

She has refused to eat all day.  Not one bite.  She may not be talking or moving much, but she can clamp those lips together like nobody’s business to let me know she does NOT want any applesauce or pudding or ice cream or anything else.  My favorite part of today was when she opened her eyes and gave me a “Leave me alone, for goodness sake” look.  I gave her high praise for that!

Well, it’s night time and I am pretty worried.  Mom has now stopped drinking anything.  She is not talking and is sleeping all the time.  She woke up briefly when my daughter came into her room in the bright pink shower puff costume that we made her for Halloween.  Even mom couldn’t ignore all the pink!  She gave a small smile and a barely audible “ooh”.

She also smiled and sighed when my son came in to say goodnight.  He always gives her a hug.  She liked it.

But no matter what I say or how loud I say it, she is not responding.  Not opening her eyes.  Not turning her head or raising her eyebrows.  Nothing.

And Sophie is worried too.  She stays right by mom’s bed.  And sometimes right ON mom’s bed.  If I leave the room and don’t block her entrance, I find her laying right by mom – not quite touching her, but as close as a dog can get without making contact.

It’s between mom and God now.  I will continue to hold her hand and do whatever I can, but I don’t think I can get to her anymore….

Mom’s Journey Home, Part 2

The second day of the last week.  It really was a wonderful day.  We all had time to sit with mom and talk to mom and fuss over mom.  She was still alert, but not agitated.  She still needed our help, but didn’t seem to mind as much…I took pictures of the kids (including Sophie) with mom this day….I’m so thankful that I did.

Happily, mom was still with us this morning.  She was peaceful today.  She still complained during bathing and changing, but that is to be expected.  The ‘crazy legs’ have settled down and for the first time in – well, since I can remember – she is not cold.  She doesn’t want the blankets pulled all the way up to her ears.  Just a sheet and that super-soft, light blanket.

She is back to using names to communicate, but she is quieter today.  It’s almost like she’s accepted the fact that this is how she is going to talk to us, so why fight it and end up with a dry, scratchy throat.

She stayed in bed again and we didn’t even roll out into the living room today.  We listened to music and I sang to her while I folded laundry.  I would pull it out of the dryer, all warm and toasty and pile it on the end of her bed.  That way I could see her and she could see me.

Keeping her upright in bed is getting to be more of a challenge.  She tends to lean.  The muscles in her neck are stiff, depending on which side she slept on and getting her straightened back out is a process requiring much patience and planning.  But once I get her upright – I figure I’ll make it as easy on her as I can by standing or sitting at the foot of her bed.

I really should always fold laundry to music.  It goes faster and when you have an audience you are trying to entertain, it seems more fun.

I have no idea if she could even process what I was saying or doing or singing.  The quietness is disturbing.  So unlike mom.  But I figure it’s best not to take a chance and go “on with the show”!

I remember how frustrated I was during mom’s numerous stays in skilled nursing rehab facilities when they would put patients in their nightgowns at 5:30 or 6:00pm.  I felt like they were rushing them so they didn’t have to deal with them.  But this week, mom has slept in until 9:00 or 10:00 am and is ready for bed by 6:00 or 7:00.  And she naps much of the day.

And, for some reason, I’ve stopped pushing.

I’ve given this a lot of thought.  I’ve gone back and forth on my decisions.  I’ve tried to ‘pros and cons’ this to death.  But, the truth is, it feels like if I push – it will be for me and not for mom.  It feels like letting her rest is the right thing to do.

I was so surprised when the nurse came this week and said how strong her blood pressure and oxygen levels were.  And how clear her lungs.  I expected a bout with pneumonia or off-the-charts blood pressure.  But no, she is stable.  And quieter.  And peaceful.

So many things to be thankful for…and so many reasons to be scared.  But she is sleeping now and so should I.

Mom’s Journey Home, Part 1

Many of you have seen the news that mom’s journey on this Earth has ended.  I could feel it coming.  And I wrote – because that’s what I do.  But I couldn’t post it.  Couldn’t hit the ‘publish’ button.

I think I thought if I kept it to myself, I could use it as a bargaining chip.  Because I just wasn’t ready.  Mom was woven into every moment of my days and nights, so how could I be ready?  How could I ever say goodbye and still be able to breathe and function? 

But it’s been a week and a little bit and we are doing surprisingly well.  I miss her all the way down to my toes.  Especially at this time of day, when the house is quiet and we should be having our coffee and watching the Today show. 

But we’re not.  She’s probably having coffee with Daddy at some heavenly coffee shop where he’s holding court with some fabulous group of friends he’s made these past 22+ years.  And she’s laughing and walking upright and able to reminisce and enjoy her Blue Plate special…

Anyway, I want to share the days heading up to her last day so I have it.  This past year has been about sharing my journey as a caregiver and from the conversations I’ve had with friends and family this week, I can tell you that this is something every caregiver will go through in some fashion.  So, everyday I wrote a little bit to capture that day, those feelings and my experience.

So, here it is…Part 1…

I have a feeling we are nearing the end with mom.  I must admit – my reasoning is a bit left of center, but somehow par for the course these days.  Yesterday mom was alert and almost too physical.  We spent the entire day calling her “Crazy Legs Peg”.  Her legs were up and down and crossed and bent and sideways.  It was as if she just couldn’t get comfortable.

I have arthritis in one of my knees and when it is still for too long, it aches and I have to move it.  Stretch it out.  Reposition it.  That’s what I felt like I was seeing with mom.

And she ate!  She had applesauce and frozen Boost.  She was thirsty and asking for water.  All of those things seemed like such good things.

I sat by her side and tormented her with conversation.  I just say aloud everything I am doing and thinking (how terrifying, right?!) so she knows I am here.  She is still communicating by saying names from her past.

Today, she was less “crazy legs” and more relaxed.  I didn’t get her out of bed.  The crazy legs things, coupled with the magic chair, has made for lots of bruising on her knees and feet.  And she’s so pale and so tiny these days.  Giant purple bruising is too much for me to handle.  Besides, her bed sits up and has wheels.  So, we can still look out the window and be upright for drinking and eating AND we have the benefit of the padding and the air mattress.  It’s a win/win in my hospice book!

Then tonight, after a pretty darned good day, she spoke to me.  Just two broken sentences, but the first acknowledgment and “conversation” we’ve had in a few days.  And that’s why I am convinced that we are nearing the end.  I am scared to death that when I wake up tomorrow, she will be in heaven.

Because tonight, while listening to the classic country station on cable, me singing a little Conway Twitty and dancing just a tad as I readied her for bed – she opened her eyes wide and said “ooooh!” and smiled at me.  I leaned over and smiled back and told her how pretty her smile was tonight.

“Pretty, pretty Lizzy.  Pretty, pretty Lucy”…that’s me!  She said I was pretty and she smiled!

I gave her a hug and told her I loved her.  How much I loved her.  How much I would always love her.  And when I pulled away to look at her she said “Love you too”.

That’s really all I still needed from her.  And now I have it.  And I’m still not ready to let her go.

We don’t know anyone who’s had a near-death experience who has shared personal stories of ‘going to the light’.  I’ve watched the interviews and read the articles and have always believed in heaven.  But I just haven’t spent much time on it.

I love the Audio Adrenaline song about heaven being a big, big house with a big, big table and a big, big yard with food and family and friends and football.  I love the idea of actual pearly gates and my daddy on the other side.  I love the idea of a warm light full of spirit and love.  But until I get there – I just won’t know.  And since getting my hopes up of one detail or the other, I choose not to spend much time on it.

I have faith that God will provide exactly what we all need when it’s time for us to be done here on Earth.  But I’m not ready for mom to go there.  I still need to hold her hand and sing her songs and tell her about my day.  In person.  Right here.

So, even though I got what I needed tonight – I hope I am wrong.

Thank Goodness It’s Monday

I can’t tell you how happy I am that it’s Monday!  My kids (clearly) did not share my enthusiasm as they heaved their backpacks onto their shoulders to head for school, but hospice has me loving Mondays!

I completely understand why there are no CNAs for mom on the weekends.  They’d never be able to hire or keep them if they had to work weekends.  But now that mom is effectively bedridden, I dread the weekends.

I am comfort to my mom.  Except on the weekends.  On the weekends, I become bather and changer and lifter, turner, hauler, puller, pusher, resituater (is that a word?), redresser, happy hiney-er (oh joy!) and general upsetter.  And she doesn’t like it.  And it makes her days less pleasant.

When the aid comes through the week – she gets the work done quickly and efficiently and she leaves.  Then I sweep in and hold mom’s hand and give her some water or sherbet or applesauce and talk and talk and talk.  Sometimes she smiles.  Sometimes she dozes off.

When I am the aid, there is no one to sweep in and make her forget the twisting and turning and changing and nakedness and vulnerability.  My kids both try, but it’s different.  And although she can’t remember details – it seems she remembers the essence of our connection.

So, she has more anxiety.  She is agitated.  She mumbles and moans and kicks her covers off and flings her legs around the bed.  She has also started turning her head toward the wall which results in a stiff neck more often than not.

So – I am celebrating Monday and Michele – super hero of my days.

It was a tough weekend.  Mom threw up on Friday.  I’ve been trying to get antibiotics into her and it was so difficult.  I took my patience to new heights.  I spent nearly 4 hours getting 1 1/2 pills into her system.  And there it was – on her nightgown.  The freshly washed nightgown I had just put on her….arrgggghhhhh.  Anyway, I was worried about her all night, so I got to sit up with her…because, really?  What’s the point of going to bed?  I’d just be laying there worrying until I came downstairs to check on her.  So, I slept while the family was still up and came down about 2:00am.  Mom weathered the storm!.

But then I was fearful to try and feed her too much on Saturday.  I bought rainbow sherbet.  Good idea!  Yay for me!  But the bathing thing on Saturday morning put mom in her crazy legs place.

So I spent most of the day trying to keep her from throwing her legs over the bed rails or pushing them against the wall.  Poor thing is bruised all over her knees…but she has always bruised easily.  And now that she is so thin and pale and in a house dress or nightgown all the time…it’s just hard to see.

I’m still pretty hesitant to overuse the lotion-potion and drops…I don’t want her zoned out all the time.  Which I’m struggling with too.  I mean, she isn’t using many words so I’m kind of guessing how she is doing or if she is aware of her surroundings.  Maybe she’s dreaming.  Maybe she’s trying to tell me something else.  Maybe she is saying exactly what I think she is saying.  But maybe she is saying – “give me some more of that happy juice and let me sleep”.

The only time I am sure what she is saying is when she is angry and doesn’t want to be moved.  Turning her to change her is too hard for me.  It breaks my heart.  I never lose my patience with her (which surprises the heck out of me), but no amount of gently soothing words will calm her down.  No amount of matter-of-fact, business-like movements will make her fear any less.  She clenches her teeth, pins her arms down to her side so I can’t pick her up, opens her eyes and says NO.  And she means it.  And I hate it.

I always get it done.  It may not be perfect, but it always gets done.  Someone is usually here to help me, but, since they don’t do this all the time, they are hesitant to lift her or pull her and then I am trying to help them help me and my brain wants to shut down from mom’s “No’s”…did I mention I’m glad it’s Monday!?  Last night, I guess I thought the diaper was a cape, I had it positioned so far up her back…it was the longest change on record in the history of the caregiver world.

Today, the heavy lifting will be done for me.  I will only be responsible for some brief changes.  Other than that – I’m hand-holding Lisa for the next 5 days.  Sherbet-serving Lisa.  Recipe-reading LIsa.  Song-singing Lisa.

Man, I love Mondays!!!

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