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!

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!

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.

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?

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.